SWHR Live Online
Scleroderma: A Chronic Pain Concern for Many
June 17, 2008
4:00 pm - 5:00 pm
Scleroderma is a chronic connective tissue disease generally classified as one of the autoimmune rheumatic diseases, such as lupus or arthritis. There are an estimated 300,000 people in the United States who have scleroderma. Female patients outnumber male patients four to one. Learn more about scleroderma with Kerri Connolly from the Scleroderma Foundation and Virginia Steen, M.D., an international expert in the diagnosis and treatment of scleroderma. View the moderators' biographies.
Puerto Rico:
Female, 50 years old, moved from Florida to Puerto Rico 5 years ago. Diagnosed with systemic scleroderma 9 years ago. Worst pain is muscle ache and finger ulcers. My 3 questions are:
(1) Why do you think scleroderma is more of a woman's disease? I know that children also get this disease.
(2) What medicine works better to heal painful finger ulcers? My personal opinion of my scleroderma is that I trully believe one of the major cause of it was personal stress that my body could not handle any more mental pain, i.e., death of a child (she was in a coma for over a year before she died), work sales related stress, single parenting, terrible divorce, among some of the things I had to endure for a long time.
(3) How much does stress have to do with scleroderma in your opinion?
Female, 50 years old, moved from Florida to Puerto Rico 5 years ago. Diagnosed with systemic scleroderma 9 years ago. Worst pain is muscle ache and finger ulcers. My 3 questions are:
(1) Why do you think scleroderma is more of a woman's disease? I know that children also get this disease.
(2) What medicine works better to heal painful finger ulcers? My personal opinion of my scleroderma is that I trully believe one of the major cause of it was personal stress that my body could not handle any more mental pain, i.e., death of a child (she was in a coma for over a year before she died), work sales related stress, single parenting, terrible divorce, among some of the things I had to endure for a long time.
(3) How much does stress have to do with scleroderma in your opinion?
Virginia Steen, M.D.:
We don't know why more women have scleroderma than men, but this is true for all the connective tissue diseases.
Stress does not cause the disease but it certainly can affect different manifestations.
Raynaud's and ulcers are definitely affected by stress. Management of ulcers is initially with the family of drugs, calcium channel blockers, such as nifedipine or amlodopine. Since these are blood pressure medications, they can be hard for some patients to take. We have been using the medication sildenafil (viagra) but many insurances aren't approving it, although the medical literature has several articles saying that it is affective.
We don't know why more women have scleroderma than men, but this is true for all the connective tissue diseases.
Stress does not cause the disease but it certainly can affect different manifestations.
Raynaud's and ulcers are definitely affected by stress. Management of ulcers is initially with the family of drugs, calcium channel blockers, such as nifedipine or amlodopine. Since these are blood pressure medications, they can be hard for some patients to take. We have been using the medication sildenafil (viagra) but many insurances aren't approving it, although the medical literature has several articles saying that it is affective.
Moderator:
Raynaud's phenomenon is a condition that results in discoloration of the hands and feet in response to cold. Raynaud's normally affects the fingers and toes. It may affect as many as 80% of patients with systemic scleroderma. Systemic scleroderma and Raynaud's can cause painful ulcers on the fingers or toes.
Raynaud's phenomenon is a condition that results in discoloration of the hands and feet in response to cold. Raynaud's normally affects the fingers and toes. It may affect as many as 80% of patients with systemic scleroderma. Systemic scleroderma and Raynaud's can cause painful ulcers on the fingers or toes.
Long Beach, California:
I quit my job because of the pain and fatique and sore feet from scleroderma. How many women are not working or are on disability? How many keep working? And how do they keep up with healthy co-workers? Do they call in sick a lot? Thank you for taking my question.
I quit my job because of the pain and fatique and sore feet from scleroderma. How many women are not working or are on disability? How many keep working? And how do they keep up with healthy co-workers? Do they call in sick a lot? Thank you for taking my question.
Kerri Connolly:
Scleroderma varies greatly person to person. Some will have very mild cases to very severe cases. It's difficult to state the exact number of those on disability. This is an issue many will face when diagnosed with scleroderma. Challenges arise when a person is faced with limitations at work. For some the job may become too physically challenging. Patients may have a conversation with their supervisor an see if "resonable accomodations" can be made. For example, work schedule hour adjustment, change in a less demanding job role, ext. The key issue is to pay attention to the signs our bodies gives us (know your limitations) and have conversations with your covering care providers regarding employment challenges. If you think you may be a candidate for disability, contact your local social security office for assistance. You can find the contact information for your local office www.ssa.gov.
Scleroderma varies greatly person to person. Some will have very mild cases to very severe cases. It's difficult to state the exact number of those on disability. This is an issue many will face when diagnosed with scleroderma. Challenges arise when a person is faced with limitations at work. For some the job may become too physically challenging. Patients may have a conversation with their supervisor an see if "resonable accomodations" can be made. For example, work schedule hour adjustment, change in a less demanding job role, ext. The key issue is to pay attention to the signs our bodies gives us (know your limitations) and have conversations with your covering care providers regarding employment challenges. If you think you may be a candidate for disability, contact your local social security office for assistance. You can find the contact information for your local office www.ssa.gov.
Philadelphia, PA:
What can you tell me about treating severe skin issues related to scleroderma with Cytoxan?
What can you tell me about treating severe skin issues related to scleroderma with Cytoxan?
Virginia Steen, M.D.:
Cytoxan has been studied mostly in severe lung disease. The effectiveness in skin disease is not really known. It is a very toxic drug so we have not used it primarily for skin.
Cytoxan has been studied mostly in severe lung disease. The effectiveness in skin disease is not really known. It is a very toxic drug so we have not used it primarily for skin.
Moderator:
Cytoxan is a trade name of the drug cyclophosphamide, which may be used to treat various types of cancer and some autoimmune disorders.
Cytoxan is a trade name of the drug cyclophosphamide, which may be used to treat various types of cancer and some autoimmune disorders.
Savannah, GA.:
What seems to work best for the pain?
What seems to work best for the pain?
Virginia Steen, M.D.:
Pain is very difficult to manage in all rheumatic diseases. It really depends on the type of pain, the cause and the effect of the pain.
For patients with very early diffuse scleroderma (more extensive skin and inflammation) where there is lots of difficulty moving, then pain control is very important so the patient can be aggressive in doing therapy to improve the mobility. In some cases I even used narcotics to make sure the patient can exercise.
If the pain is from digital ulcers, that also may require narcotics since the decrease in blood supply is extremely painful.
However, if the pain is more non-specific and generalized in the muscles, it may be more related to not sleeping or not exercising and then treating the sleep -- so, doing more aerobic exercise is important.
Pain is very difficult to manage in all rheumatic diseases. It really depends on the type of pain, the cause and the effect of the pain.
For patients with very early diffuse scleroderma (more extensive skin and inflammation) where there is lots of difficulty moving, then pain control is very important so the patient can be aggressive in doing therapy to improve the mobility. In some cases I even used narcotics to make sure the patient can exercise.
If the pain is from digital ulcers, that also may require narcotics since the decrease in blood supply is extremely painful.
However, if the pain is more non-specific and generalized in the muscles, it may be more related to not sleeping or not exercising and then treating the sleep -- so, doing more aerobic exercise is important.
Kirkland:
My question is regarding the treatment of this disease and about the prognosis. My mother was diagnosted with scleroderma type Raynaud's a year ago. At this moment she is very weak and her liver tests don't look very well. I am so concerned about her heath. She is also very depressed. Please tell me how I can help her.
My question is regarding the treatment of this disease and about the prognosis. My mother was diagnosted with scleroderma type Raynaud's a year ago. At this moment she is very weak and her liver tests don't look very well. I am so concerned about her heath. She is also very depressed. Please tell me how I can help her.
Kerri Connolly:
Our support groups are one way to obtain the support that your mother needs at this time. Visit our Web site (www.scleroderma.org) to find your local chapter or support group. Many people find it helpful to speak with others living with scleroderma.
Our support groups are one way to obtain the support that your mother needs at this time. Visit our Web site (www.scleroderma.org) to find your local chapter or support group. Many people find it helpful to speak with others living with scleroderma.
Winston-Salem, NC:
I was diagnosed with scleroderma 3 years ago. I have Raynaud's, dry eye syndrome, but not dry mouth. I have a coup de sabre mark on my shin, but my skin has not hardened, only discolored from white to a light purple. I have positive ANA. I am seeing a rheumatologist and dermatologist, both of whom I have great trust and respect. Both say they do not know what form of scleroderma I have and will not know until I develop more symptoms. Have you seen similar cases and can you predict what form of scleroderma I might have?
I was diagnosed with scleroderma 3 years ago. I have Raynaud's, dry eye syndrome, but not dry mouth. I have a coup de sabre mark on my shin, but my skin has not hardened, only discolored from white to a light purple. I have positive ANA. I am seeing a rheumatologist and dermatologist, both of whom I have great trust and respect. Both say they do not know what form of scleroderma I have and will not know until I develop more symptoms. Have you seen similar cases and can you predict what form of scleroderma I might have?
Virginia Steen, M.D.:
Unfortunately, these diseases do not 'read the textbooks' and many people have symptoms or experiences that are not classic. Coup de sabre is usually referring to localized scleroderma on the face. If you do not have hard skin, then maybe the skin problem on your shin is not scleroderma. Systemic sclerosis, which has the Raynaud's, usually starts with skin thickening on the hands not the shins.
Unfortunately, these diseases do not 'read the textbooks' and many people have symptoms or experiences that are not classic. Coup de sabre is usually referring to localized scleroderma on the face. If you do not have hard skin, then maybe the skin problem on your shin is not scleroderma. Systemic sclerosis, which has the Raynaud's, usually starts with skin thickening on the hands not the shins.
Moderator:
"Coup de sabre" is a French term that refers to a marking on the skin that sometimes visually resembles what you would expect from a scar from a sword or saber wound.
"Coup de sabre" is a French term that refers to a marking on the skin that sometimes visually resembles what you would expect from a scar from a sword or saber wound.
Baton Rouge, Louisiana:
Why is scleroderma so hard to dectect? I first was diagnosed with systemic lupus, Raynaud's dieases and now systemic scleroderma. Also, are there any research centers in the Louisiana area for scleroderma.
Why is scleroderma so hard to dectect? I first was diagnosed with systemic lupus, Raynaud's dieases and now systemic scleroderma. Also, are there any research centers in the Louisiana area for scleroderma.
Virginia Steen, M.D.:
Scleroderma and lupus can have many of the same symtpoms and lab tests, so it is often difficult to be sure of the diagnosis in the beginning. Also there are some patients who have both diseases, overlaped or mixed connective tissue disease. There are no scleroderma centers in Louisiana. You can look on the Scleroderma Clinical Trials Consortium for the scleroderma centers that would be closest to you.
Scleroderma and lupus can have many of the same symtpoms and lab tests, so it is often difficult to be sure of the diagnosis in the beginning. Also there are some patients who have both diseases, overlaped or mixed connective tissue disease. There are no scleroderma centers in Louisiana. You can look on the Scleroderma Clinical Trials Consortium for the scleroderma centers that would be closest to you.
Moderator:
The Scleroderma Clinical Trials Consortium is online at: www.sctc-online.org.
The Scleroderma Clinical Trials Consortium is online at: www.sctc-online.org.
Boise, Idaho:
I have both chronic and acute deep muscle pain in the lower extremities that is worse in the evening and often interferes greatly with quality of sleep, both sleep onset and sustaining sleep. Pain is described as deep muscle pain, usually bilateral in both the thighs and calves. I have tried ibuprofen, Aleve, occasionally Vicodin at night along with a prescription sleeping medication. I walk several times a day. I have interstitial lung disease, dystolic dsfunction and profound GI problems. I have tried epsom salt soaks, calcium and magnesium at night. Please help. The insomnia is becoming so acute that it is difficult to function. Also, I am planning a long trip by air to see my children and grandchildren who are missionaries in the Czech Republic and would appreciate any suggestions regarding that. Thank you so much.
I have both chronic and acute deep muscle pain in the lower extremities that is worse in the evening and often interferes greatly with quality of sleep, both sleep onset and sustaining sleep. Pain is described as deep muscle pain, usually bilateral in both the thighs and calves. I have tried ibuprofen, Aleve, occasionally Vicodin at night along with a prescription sleeping medication. I walk several times a day. I have interstitial lung disease, dystolic dsfunction and profound GI problems. I have tried epsom salt soaks, calcium and magnesium at night. Please help. The insomnia is becoming so acute that it is difficult to function. Also, I am planning a long trip by air to see my children and grandchildren who are missionaries in the Czech Republic and would appreciate any suggestions regarding that. Thank you so much.
Virginia Steen, M.D.:
I am not sure exactly why you have had so much muscle pain, but I am sure it is worse with the sleep problems. There are some patients with similar symptoms who have fibromyalgia and, sometimes, the stress of having another disease can lead to fibromyalgia symtpoms. You definitely need to improve your sleep. We use a muscle relaxant, cyclobenzaprine (Flexeril), 2.5 to 20 mg depending on how much you need to sleep through the night without being groggy in the morning. Pain medications are often not that effective in this kind of pain. Make sure when you are on the long flight that you get up, move around and do leg exercises.
I am not sure exactly why you have had so much muscle pain, but I am sure it is worse with the sleep problems. There are some patients with similar symptoms who have fibromyalgia and, sometimes, the stress of having another disease can lead to fibromyalgia symtpoms. You definitely need to improve your sleep. We use a muscle relaxant, cyclobenzaprine (Flexeril), 2.5 to 20 mg depending on how much you need to sleep through the night without being groggy in the morning. Pain medications are often not that effective in this kind of pain. Make sure when you are on the long flight that you get up, move around and do leg exercises.
Jacksonville Florida:
How long or how much pain is to be expected from dental extractions of two root extractions, during which 600 mg of clindamycin and which appears to feel like a large amount of anesthesia(novacaine), not sure, was given at the same time, during this procedure? It is the 4th day since dental surgery procedure and still in severe pain of jaw and gums as well as continued drug reaction from anesthesia, still in my system. I have been extremely painful, weak, nauseated, swelling, with symptoms so severe, daily activities limited. My daily medication has been prescribed to take 5 mg of Norvasc, which was already in my system. My diagnosis, from which i suffer, is scleroderma CREST, rheumatoid factor, pulmonary hypertension, Raynaud's, heart arythma at times and leaking valves. Thank you so very much for you kindness.
How long or how much pain is to be expected from dental extractions of two root extractions, during which 600 mg of clindamycin and which appears to feel like a large amount of anesthesia(novacaine), not sure, was given at the same time, during this procedure? It is the 4th day since dental surgery procedure and still in severe pain of jaw and gums as well as continued drug reaction from anesthesia, still in my system. I have been extremely painful, weak, nauseated, swelling, with symptoms so severe, daily activities limited. My daily medication has been prescribed to take 5 mg of Norvasc, which was already in my system. My diagnosis, from which i suffer, is scleroderma CREST, rheumatoid factor, pulmonary hypertension, Raynaud's, heart arythma at times and leaking valves. Thank you so very much for you kindness.
Virginia Steen, M.D.:
You should discuss this with the dentist. It probably isn't related to scleroderma.
You should discuss this with the dentist. It probably isn't related to scleroderma.
Moderator:
CREST syndrome, now more commonly referred to as limited scleroderma, is a type of systemic scleroderma. The term CREST is used less now because it does not accurately reflect all of the condition's aspects. The word CREST is an acronym based around these symptoms or problems:
Calcinosis (calcium deposits, usually in the fingers)
Raynaud's
Esophagus (loss of muscle control in the esophagus)
Sclerodactyly, a deformity of finger bones
Telangiectasia, small red spots on the skin
CREST syndrome, now more commonly referred to as limited scleroderma, is a type of systemic scleroderma. The term CREST is used less now because it does not accurately reflect all of the condition's aspects. The word CREST is an acronym based around these symptoms or problems:
Calcinosis (calcium deposits, usually in the fingers)
Raynaud's
Esophagus (loss of muscle control in the esophagus)
Sclerodactyly, a deformity of finger bones
Telangiectasia, small red spots on the skin
Michigan:
Is scleroderma pain and fibromyalgia pain related or the same? Does the pain associated with Lichen Myxedematosus relate to scleroderma pain? I have been told that I have all 3. Now with the diagnosis of lichen myxedematosus, no doctor I find will treat me. If I just don't tell a doctor that I have it, will scleroderma treatment take care of the lichen myxedematosus?
Is scleroderma pain and fibromyalgia pain related or the same? Does the pain associated with Lichen Myxedematosus relate to scleroderma pain? I have been told that I have all 3. Now with the diagnosis of lichen myxedematosus, no doctor I find will treat me. If I just don't tell a doctor that I have it, will scleroderma treatment take care of the lichen myxedematosus?
Virginia Steen, M.D.:
This is obvious a complex dermatological problem and I can't tell exactly what is going on. Please check with scleroderma.org for the scleroderma center in Michigan. It may be worth a trip just to be sure the diagnosis is correct. These are uncommon diseases, so it is often hard to know what exactly is going on.
This is obvious a complex dermatological problem and I can't tell exactly what is going on. Please check with scleroderma.org for the scleroderma center in Michigan. It may be worth a trip just to be sure the diagnosis is correct. These are uncommon diseases, so it is often hard to know what exactly is going on.
San Francisco:
What are good facial cleansers, toners, moisturizers for people with scleroderma? I have spots on my chest, redness on my cheeks possibly rosacia, visible tiny veins on my cheeks, and slight darkening in certain areas, similar to age spots? I would like to keep my skin moisturized, yet during the day, I cannot use a heavy cream, as I will perspire under it.
What are good facial cleansers, toners, moisturizers for people with scleroderma? I have spots on my chest, redness on my cheeks possibly rosacia, visible tiny veins on my cheeks, and slight darkening in certain areas, similar to age spots? I would like to keep my skin moisturized, yet during the day, I cannot use a heavy cream, as I will perspire under it.
Kerri Connolly:
For facial cleansers and moisturizers, many patients have given us feedback on the following products:
Over-the-Counter Skin Lotions
KeriCream®
Lanalor®
Lubriderm®
Eucerin Moisturizing® creams and lotions
Nivea Moisturizing®
UltraDerm®
Alpha Keri Bath Oil®
Penederm alpha hydroxy cream®
Aveeno bath oil & moisturizer®
For facial cleansers and moisturizers, many patients have given us feedback on the following products:
Over-the-Counter Skin Lotions
KeriCream®
Lanalor®
Lubriderm®
Eucerin Moisturizing® creams and lotions
Nivea Moisturizing®
UltraDerm®
Alpha Keri Bath Oil®
Penederm alpha hydroxy cream®
Aveeno bath oil & moisturizer®
Anonymous:
I received Ilomedin infusions in Switzerland for severe Raynaud's. It helped not only for Raynaud's but also for a whole body softening and strengthening. Why are these infusions not given in the United States?
I received Ilomedin infusions in Switzerland for severe Raynaud's. It helped not only for Raynaud's but also for a whole body softening and strengthening. Why are these infusions not given in the United States?
Virginia Steen, M.D.:
I am not sure what the Ilomedin infusions are, but I do know that they use an Iloprost infusion for Raynaud's. It was studied in the U.S. many years ago but the FDA did not initially approve it. They wanted more information and the drug company did not follow through and so it never was approved. It can be very helpful for Raynaud's.
I am not sure what the Ilomedin infusions are, but I do know that they use an Iloprost infusion for Raynaud's. It was studied in the U.S. many years ago but the FDA did not initially approve it. They wanted more information and the drug company did not follow through and so it never was approved. It can be very helpful for Raynaud's.
durham nc:
I have scleroderma and I stay in so much pain, the doctor's not helping me at all. I also have a g-tube and stay in so much pain. Who can I see for help?
I have scleroderma and I stay in so much pain, the doctor's not helping me at all. I also have a g-tube and stay in so much pain. Who can I see for help?
Idaho:
I am trying to take niacin for high cholestrol. I am experiencing the niacin rush, but it appears to me that it is extremely uncomfortable on my skin that has scleroderma. I have it on my face, arms, hands, legs, and feet. Do you know if it is indeed harmful to scleroderma skin or just appears so be more severe?
I am trying to take niacin for high cholestrol. I am experiencing the niacin rush, but it appears to me that it is extremely uncomfortable on my skin that has scleroderma. I have it on my face, arms, hands, legs, and feet. Do you know if it is indeed harmful to scleroderma skin or just appears so be more severe?
Virginia Steen, M.D.:
I have not seen that problem. I would probably try to stop the niacin for a while to see whether it really is from that or just from the scleroderma. There is no reason that it should be harmful to scleroderma skin.
I have not seen that problem. I would probably try to stop the niacin for a while to see whether it really is from that or just from the scleroderma. There is no reason that it should be harmful to scleroderma skin.
San Francisco:
What is the best way to treat digital ulcers once they have occurred? Is it better to keep it covered or should it be allowed to "air out?" I have been going to a wound center for the last 4 months to treat an ulcer on my finger. How can I treat this myself, from home, the next time?
What is the best way to treat digital ulcers once they have occurred? Is it better to keep it covered or should it be allowed to "air out?" I have been going to a wound center for the last 4 months to treat an ulcer on my finger. How can I treat this myself, from home, the next time?
Virginia Steen, M.D.:
Digital ulcers are indeed very difficult to heal. Generally, soaking them 2 times a day in antiseptic liquid, letting dry and then putting a small amount of antibiotic ointment and covering them works the best. But if that doesn't work, then trying to let it 'air out.' However, it is important not to let the scab get too hard because bacteria can get caught underneath the scab. New onset of severe pain and swelling in an ulcer, suggests infection.
Digital ulcers are indeed very difficult to heal. Generally, soaking them 2 times a day in antiseptic liquid, letting dry and then putting a small amount of antibiotic ointment and covering them works the best. But if that doesn't work, then trying to let it 'air out.' However, it is important not to let the scab get too hard because bacteria can get caught underneath the scab. New onset of severe pain and swelling in an ulcer, suggests infection.
San Francisco:
Is it common with scleroderma to have memory loss? Or is this a common side effect of drugs? I have noticed short term memory loss and frequent "tip of the tongue" syndrome.
Is it common with scleroderma to have memory loss? Or is this a common side effect of drugs? I have noticed short term memory loss and frequent "tip of the tongue" syndrome.
Virginia Steen, M.D.:
Scleroderma per se does not have significant memory loss, but having scleroderma -- the stress and pain of a chronic disease, as well as depression, sleep difficulty and medication all can contribute to memory and thinking problems. You should check with you doctor about your medication.
Scleroderma per se does not have significant memory loss, but having scleroderma -- the stress and pain of a chronic disease, as well as depression, sleep difficulty and medication all can contribute to memory and thinking problems. You should check with you doctor about your medication.
Simi Valley, CA:
I was diagnosed a month ago with an early stage of linear morphea [localized scleroderma], what can I take for the pain?
I was diagnosed a month ago with an early stage of linear morphea [localized scleroderma], what can I take for the pain?
Virginia Steen, M.D.:
You should discuss with your doctor the cause of the pain. Tylenol is usually a good place to start.
You should discuss with your doctor the cause of the pain. Tylenol is usually a good place to start.
Aptos, Ca:
I was eating a piece of crusty bread and it nicked the roof of my mouth, which began to bleed. The bleeding increased and did not stop for about 30 minutes. Is this connected with my diffuse scleroderma, or merely a result of a little blood vessel being broken?
I was eating a piece of crusty bread and it nicked the roof of my mouth, which began to bleed. The bleeding increased and did not stop for about 30 minutes. Is this connected with my diffuse scleroderma, or merely a result of a little blood vessel being broken?
Virginia Steen, M.D.:
There are little blood vessels that get dilated, telangiectasia, that can be on the membranes in your mouth. That could have been what happened.
There are little blood vessels that get dilated, telangiectasia, that can be on the membranes in your mouth. That could have been what happened.
Moderator:
Telangiectasias may be associated with CREST or limited scleroderma.
Telangiectasias may be associated with CREST or limited scleroderma.
Philadelphia, PA:
I have just completed a broncostomy and am relieved to hear the results were very favorable. However, I have some challenges with hoarness of my voice which increases when exposed to cold weather or air conditioning. Is this something that will become worse over time? I was diagnosed with Raynaud's in 2000 and definitively with CREST in 2003. I feel relatively well from a year ago I began my disability leave from work. I am in good spirits and am just becoming active since the spring and summer began. I do remain, however, very focused and concerned about my health and try to stay as proactive as possible. Thank you!
I have just completed a broncostomy and am relieved to hear the results were very favorable. However, I have some challenges with hoarness of my voice which increases when exposed to cold weather or air conditioning. Is this something that will become worse over time? I was diagnosed with Raynaud's in 2000 and definitively with CREST in 2003. I feel relatively well from a year ago I began my disability leave from work. I am in good spirits and am just becoming active since the spring and summer began. I do remain, however, very focused and concerned about my health and try to stay as proactive as possible. Thank you!
Virginia Steen, M.D.:
I am glad you are so optimistic and being so positive. As far as the hoarseness, sometimes it can be from reflux, and you may want to make sure you are taking the reflux medicine regularly -- once or maybe twice a day to see if that helps. Also dryness of the throat can aggrevate hoarseness so that may be why you notice it in the cold weather.
I am glad you are so optimistic and being so positive. As far as the hoarseness, sometimes it can be from reflux, and you may want to make sure you are taking the reflux medicine regularly -- once or maybe twice a day to see if that helps. Also dryness of the throat can aggrevate hoarseness so that may be why you notice it in the cold weather.
Portage, WI:
I have this disease and I was wondering if there are foods we should stay away from or if there are any that will help the inflammation? Are there any organic types of treatment? Thank you.
I have this disease and I was wondering if there are foods we should stay away from or if there are any that will help the inflammation? Are there any organic types of treatment? Thank you.
Virginia Steen, M.D.:
There are no specific foods that aggrevate the disease, although organic and complementary thereapy have not been studied in any of our diseases very much. Trying to see what works for you, as long as you are following your doctors other suggestions, is the best approach.
There are no specific foods that aggrevate the disease, although organic and complementary thereapy have not been studied in any of our diseases very much. Trying to see what works for you, as long as you are following your doctors other suggestions, is the best approach.
Dallas, Texas:
I was diagnosed with scleroderma when I was 35 yrs old. I'm now 54. I have lost a lot of my teeth. I'm wearing dentures. I can't find the right dentist that knows about scleroderma. Do you have any suggestions?
I was diagnosed with scleroderma when I was 35 yrs old. I'm now 54. I have lost a lot of my teeth. I'm wearing dentures. I can't find the right dentist that knows about scleroderma. Do you have any suggestions?
Kerri Connolly:
The Scleroderma Foundation's Texas chapter may be able to help you find a dentist in your area that is familiar with scleroderma. Their number is 866-LEARNSF (532-7673), please give them a call. SF also has a brochure on dental issues.
The Scleroderma Foundation's Texas chapter may be able to help you find a dentist in your area that is familiar with scleroderma. Their number is 866-LEARNSF (532-7673), please give them a call. SF also has a brochure on dental issues.
Chennai, India:
What effect does it have on my sexual life. Should I desist from sex? Does this disease reduce my urge for sex?
What effect does it have on my sexual life. Should I desist from sex? Does this disease reduce my urge for sex?
Kerri Connolly:
This is a great question, as it is an area that isn't commonly discussed. The Foundation has a brochure on scleroderma and sexuality.
This is a great question, as it is an area that isn't commonly discussed. The Foundation has a brochure on scleroderma and sexuality.
San Francisco:
I have been told by my doctor that stretching and range of motion exercising is better than aerobic exercise. Can you address this? Thank you.
I have been told by my doctor that stretching and range of motion exercising is better than aerobic exercise. Can you address this? Thank you.
Virginia Steen, M.D.:
In scleroderma many patients have the tightness of the skin and pain in the joints that tend cause loss of motion in the joints. If you do not do the stretching exercises than the motion could get even worse. If you don't have any problems with specific joints or loss of motion, then the aerobic exercise would be good. The important thing is to keep moving so the mobility and flexibility is maintained.
In scleroderma many patients have the tightness of the skin and pain in the joints that tend cause loss of motion in the joints. If you do not do the stretching exercises than the motion could get even worse. If you don't have any problems with specific joints or loss of motion, then the aerobic exercise would be good. The important thing is to keep moving so the mobility and flexibility is maintained.
Fairfax, VA:
My son, Wally, age 33, suffers very painful limited scleroderma symptoms -- toe, finger, and elbow ulcers. He takes percocet, precribed by his doctor. Please advise if there are alternatives to this addictive medicine. Any suggestions or advice you provide would be appreciated.
My son, Wally, age 33, suffers very painful limited scleroderma symptoms -- toe, finger, and elbow ulcers. He takes percocet, precribed by his doctor. Please advise if there are alternatives to this addictive medicine. Any suggestions or advice you provide would be appreciated.
Virginia Steen, M.D.:
Pain from ulcers can be chronic and severe even requiring addictive medication. We have been trying some of the new medications (such as Lyrica or neurotin) that affect pain centrally and the nerves. There are some lidoderma patches that some patients have found helpful.
Pain from ulcers can be chronic and severe even requiring addictive medication. We have been trying some of the new medications (such as Lyrica or neurotin) that affect pain centrally and the nerves. There are some lidoderma patches that some patients have found helpful.
Sacramento, CA:
I have morphea in my left calf tendon, where the worst of the morphea has been frequent spasaming. I am now experiencing problems with the tendons on the bottom of my foot. My doctor says I have Plantar Fasciitis, but although I am taking 800 mg ibuprofen two (2) times a day and do the stretching exercises, it seems to be getting worse instead of better. Does this have anything to do with the morphea?
I have morphea in my left calf tendon, where the worst of the morphea has been frequent spasaming. I am now experiencing problems with the tendons on the bottom of my foot. My doctor says I have Plantar Fasciitis, but although I am taking 800 mg ibuprofen two (2) times a day and do the stretching exercises, it seems to be getting worse instead of better. Does this have anything to do with the morphea?
Virginia Steen, M.D.:
It is probably related at least partially. Exercises and orthotics are the best management.
It is probably related at least partially. Exercises and orthotics are the best management.
ocala, florida:
Someone very close to me has scleroderma, being diagnosed about 13 years ago. She is resistant to conventional medications and has been living medication free for about 5 years, not liking the side effects the meds have. She has been maintaining strength, flexibility, and pulmonary function through light weight training and running.
However, last month she developed an extremely painful spot on top of her left foot that prohibits her from wearing running shoes, and even inhibits her walking stride, so exercise has gone by the wayside. Since then, her lung compliance has suffered, and she is increasingly short of breath. A CT scan and MRI have not shown any structural damage. The spot is about 2 inches in diameter on the outer top of her left foot and is frequently discolored and swollen. Has anyone else experienced similar symptoms, and if so, what was the diagnosis/treatment?
If she doesn't start an exercise program again soon, I'm afraid her lung function will deteriorate. She also suffers frequent bouts of generalized body pain, but these flare ups only occur about every two months. The lack of exercise and progressive loss of lung function are the chief concern. Any input will be greatly appreciated.
Someone very close to me has scleroderma, being diagnosed about 13 years ago. She is resistant to conventional medications and has been living medication free for about 5 years, not liking the side effects the meds have. She has been maintaining strength, flexibility, and pulmonary function through light weight training and running.
However, last month she developed an extremely painful spot on top of her left foot that prohibits her from wearing running shoes, and even inhibits her walking stride, so exercise has gone by the wayside. Since then, her lung compliance has suffered, and she is increasingly short of breath. A CT scan and MRI have not shown any structural damage. The spot is about 2 inches in diameter on the outer top of her left foot and is frequently discolored and swollen. Has anyone else experienced similar symptoms, and if so, what was the diagnosis/treatment?
If she doesn't start an exercise program again soon, I'm afraid her lung function will deteriorate. She also suffers frequent bouts of generalized body pain, but these flare ups only occur about every two months. The lack of exercise and progressive loss of lung function are the chief concern. Any input will be greatly appreciated.
Virginia Steen, M.D.:
It is hard to tell what the cause of her foot pain is. It could be a stress facture. Decrease in lung function because of inactivity is not from scleroderma damage which was not seen on the scans, it is just from deconditioning. She could try some non weight bearing exercise such as swimming. but she should have the foot x-rayed and be seen by an orthopedic doctor.
It is hard to tell what the cause of her foot pain is. It could be a stress facture. Decrease in lung function because of inactivity is not from scleroderma damage which was not seen on the scans, it is just from deconditioning. She could try some non weight bearing exercise such as swimming. but she should have the foot x-rayed and be seen by an orthopedic doctor.
San Francisco:
How does the disease impact Asian women? Is it the same or different than non-Asian women? Where should I look if I want to find out more about how Scleroderma impacts minority women? Any new medical treatment for those who have less severe forms of scleroderma?
How does the disease impact Asian women? Is it the same or different than non-Asian women? Where should I look if I want to find out more about how Scleroderma impacts minority women? Any new medical treatment for those who have less severe forms of scleroderma?
Virginia Steen, M.D.:
Dr. Lori Chung at Stanford has a special interest in the impact of scleroderma on Asian women. From studies in Japan, the presentations are somewhat different but not much work has been done from other Asian countries.
Dr. Lori Chung at Stanford has a special interest in the impact of scleroderma on Asian women. From studies in Japan, the presentations are somewhat different but not much work has been done from other Asian countries.
Moderator:
Dr. Lori Chung is an Assistant Professor of Medicine at the Stanford University School of Medicine, specializing in Immunology and Rheumatology. Her e-mail address is: shauwei@stanford.edu
Dr. Lori Chung is an Assistant Professor of Medicine at the Stanford University School of Medicine, specializing in Immunology and Rheumatology. Her e-mail address is: shauwei@stanford.edu
Alexandria, LA:
I have (CREST) scleroderma and fibromyalgia. My when I report pain, fatigue, and muscle weakness, the doctor always says it is the fibromyalgia. I don't understand what kind of pain the scleroderma causes since the doctor says everything I report is from the fibromyalgia.
I have (CREST) scleroderma and fibromyalgia. My when I report pain, fatigue, and muscle weakness, the doctor always says it is the fibromyalgia. I don't understand what kind of pain the scleroderma causes since the doctor says everything I report is from the fibromyalgia.
Virginia Steen, M.D.:
Pain with scleroderma tends to be more focused on certain areas: Raynaud's, finger ulcers, joint inflammation or tendon problems. Fibromyalgia pain is more non-specific, generalized and in the muscles. But at times it is hard to separate the two particularly because any illness can make the fibromyalgia pains worse.
Pain with scleroderma tends to be more focused on certain areas: Raynaud's, finger ulcers, joint inflammation or tendon problems. Fibromyalgia pain is more non-specific, generalized and in the muscles. But at times it is hard to separate the two particularly because any illness can make the fibromyalgia pains worse.
Terryville CT:
I have had scleroderma for about 6 yrs now and I was told that I have pulmonary hypertension. I have to see the doctor in a few weeks so I was wondering if you can give me a little info on it. Thanks, June
I have had scleroderma for about 6 yrs now and I was told that I have pulmonary hypertension. I have to see the doctor in a few weeks so I was wondering if you can give me a little info on it. Thanks, June
Kerri Connolly:
The Scleroderma Foundation has compiled information in a pulmonary hypertension fact sheet. You can also view our brochure on PH.
The Scleroderma Foundation has compiled information in a pulmonary hypertension fact sheet. You can also view our brochure on PH.
Salem, MA:
What is the role of the Scleroderma Foundation? Do you have any educational resources for patients?
What is the role of the Scleroderma Foundation? Do you have any educational resources for patients?
Kerri Connolly:
The Scleroderma Foundation's mission is three-fold:
To help patients and their families cope with scleroderma through mutual support programs, peer counseling, physician referrals and education information.
To promote public awareness and education through patient and health professional seminars, literature and publicity campaigns.
To stimulate and support research to improve treatment and ultimately find the cause and cure of scleroderma and related diseases.
If you are a person living with scleroderma, the Foundation is here to help. We have 23 chapters and hundreds of support groups throughout the U.S. and parts of Canada, and a wide referral base of physicians familiar with scleroderma. Please visit our Web site at www.scleroderma.org or call us at (800) 722-HOPE (4673) for more information.
The Scleroderma Foundation's mission is three-fold:
To help patients and their families cope with scleroderma through mutual support programs, peer counseling, physician referrals and education information.
To promote public awareness and education through patient and health professional seminars, literature and publicity campaigns.
To stimulate and support research to improve treatment and ultimately find the cause and cure of scleroderma and related diseases.
If you are a person living with scleroderma, the Foundation is here to help. We have 23 chapters and hundreds of support groups throughout the U.S. and parts of Canada, and a wide referral base of physicians familiar with scleroderma. Please visit our Web site at www.scleroderma.org or call us at (800) 722-HOPE (4673) for more information.
Washington, D.C.:
Is the number of patients with scleroderma growing or do you think the rate of incidence has stayed pretty constant over the last 20-30 years?
Is the number of patients with scleroderma growing or do you think the rate of incidence has stayed pretty constant over the last 20-30 years?
Virginia Steen, M.D.:
There have been several studies suggesting that the incidence is increasing but it may only be that it is better diagnosed and recognized, which is a good thing. But it isn't increasing at a rate that would suggest a major environmental or toxic exposure that we could identify.
There have been several studies suggesting that the incidence is increasing but it may only be that it is better diagnosed and recognized, which is a good thing. But it isn't increasing at a rate that would suggest a major environmental or toxic exposure that we could identify.
Anonymous:
Why is everything so vague about this disease? I have recently been diagnosed with CREST and am trying to find out how one should feel. I am in a lot of pain most of the time (hands and wrists) and extremely tired as well.
Why is everything so vague about this disease? I have recently been diagnosed with CREST and am trying to find out how one should feel. I am in a lot of pain most of the time (hands and wrists) and extremely tired as well.
Virginia Steen, M.D.:
The problem in scleroderma is that there are so many different symptoms, such variations on the severity of each symtpom and the timing of the disease also affects patients differently, so that almost everyone has a unique illness.
That said, a new diagnosis of limited scleroderma (CREST) is commonly associated with fatigue, swollen hands and pain, but you need to make sure your doctor is monitoring you to see that you don't have anything else going on.
The problem in scleroderma is that there are so many different symptoms, such variations on the severity of each symtpom and the timing of the disease also affects patients differently, so that almost everyone has a unique illness.
That said, a new diagnosis of limited scleroderma (CREST) is commonly associated with fatigue, swollen hands and pain, but you need to make sure your doctor is monitoring you to see that you don't have anything else going on.
Ann Arbor MI:
Could you comment on "overlap syndrome" re: RA-Reynaud's-telangectasias-Sjogren's and PAH?
"Informally" diagnosed with scleroderma and CREST, I have all of the above. The scleroderma diagnosis was based largely on esophageal dysfunction (requiring stretching x 1) with GERD. I have no obvious external scleroderma-like patches. This is all very confusing. Thanks.
Could you comment on "overlap syndrome" re: RA-Reynaud's-telangectasias-Sjogren's and PAH?
"Informally" diagnosed with scleroderma and CREST, I have all of the above. The scleroderma diagnosis was based largely on esophageal dysfunction (requiring stretching x 1) with GERD. I have no obvious external scleroderma-like patches. This is all very confusing. Thanks.
Kerri Connolly:
Scleroderma can bring on various manifestations. The Foundation has compiled a medical archive on the various symptoms of scleroderma and secondary disorders. All of this information is written for patients in an easy to read format.
Scleroderma can bring on various manifestations. The Foundation has compiled a medical archive on the various symptoms of scleroderma and secondary disorders. All of this information is written for patients in an easy to read format.
Ft Pierce FL:
I've just been diagnosed, and won't know prognosis for 2 weeks (next appt). I must admit being more than a bit apprehensive, as to the outlook. I'm tired of hearing 'you're strong'; 'you can get through this.' Without having definite answers, I don't know what I'm facing, to know how strong I HAVE to be. Could someone who has had scleroderma for a while, respond to me? I feel like I must stay stoic, because that's what is expected of me. In the mwantime, not knowing the outcome is totally terrifying. Can you help me find answers? Maggie
I've just been diagnosed, and won't know prognosis for 2 weeks (next appt). I must admit being more than a bit apprehensive, as to the outlook. I'm tired of hearing 'you're strong'; 'you can get through this.' Without having definite answers, I don't know what I'm facing, to know how strong I HAVE to be. Could someone who has had scleroderma for a while, respond to me? I feel like I must stay stoic, because that's what is expected of me. In the mwantime, not knowing the outcome is totally terrifying. Can you help me find answers? Maggie
Kerri Connolly:
Hi Maggie,
Everyone responds differently to a diagnosis of scleroderma. There are many people in our community who have had the same feelings that you have. A support group may be a good way for you to meet others who are living with this diagnosis as well. Please give us a call at 800-722-HOPE (4673) and we can help connect you with your local chapter support group. Also, there is an online message board for patients, families and caregivers. You are on the right track with the questions you are asking, and becoming educated about your diagnosis. One final resource the Foundation can offer is our National Patient Education Conference being held in California this July. Please don't hesitate to contact us.
Hi Maggie,
Everyone responds differently to a diagnosis of scleroderma. There are many people in our community who have had the same feelings that you have. A support group may be a good way for you to meet others who are living with this diagnosis as well. Please give us a call at 800-722-HOPE (4673) and we can help connect you with your local chapter support group. Also, there is an online message board for patients, families and caregivers. You are on the right track with the questions you are asking, and becoming educated about your diagnosis. One final resource the Foundation can offer is our National Patient Education Conference being held in California this July. Please don't hesitate to contact us.
Greenville, Ohio:
Are there any treatment centers for scleroderma in my area?
Are there any treatment centers for scleroderma in my area?
Kerri Connolly:
The Scleroderma Foundation has a database of scleroderma specialists and treatment centers across the U.S. and parts of Canada. Please contact us at 800-722-4673 and we can help you with a referral.
The Scleroderma Foundation has a database of scleroderma specialists and treatment centers across the U.S. and parts of Canada. Please contact us at 800-722-4673 and we can help you with a referral.
Binghamton, NY:
I can not take most prescription pain medications. I have pain all over my joints. What can I do besides taking hot showers to alivate the pain and swelling? I can take over-the-counter NSAIDS, but they cause stomach problems. Help! I had new knees and could only take acetaminophen.
I can not take most prescription pain medications. I have pain all over my joints. What can I do besides taking hot showers to alivate the pain and swelling? I can take over-the-counter NSAIDS, but they cause stomach problems. Help! I had new knees and could only take acetaminophen.
Virginia Steen, M.D.:
Try taking over the counter Pepcid or Prilosec for the stomach upset, but discuss it with your doctor.
Try taking over the counter Pepcid or Prilosec for the stomach upset, but discuss it with your doctor.
Pompano Beach, Florida:
I am a 64-year old female with CREST scleroderma and secondary Sjogren's syndrome. I suffer with extrme dry mouth, especially burning of the mouth lining. I've lost sense of smell and partial taste buds. (I can taste sweets, salt, lemon, but not herbs or garlic.) I've tried Biotene gum, toothpaste and gels, baking soda toothpaste, rinses, yogurt, Lysine oinment, and I drink lots of water. I've even tried Diflucan for thrush. Do you have any other tips on what I should or shouldn't eat or do? It seems I have a lot of acid in my mouth and baking soda rinse seems to help a little. Please help! Thank you.
I am a 64-year old female with CREST scleroderma and secondary Sjogren's syndrome. I suffer with extrme dry mouth, especially burning of the mouth lining. I've lost sense of smell and partial taste buds. (I can taste sweets, salt, lemon, but not herbs or garlic.) I've tried Biotene gum, toothpaste and gels, baking soda toothpaste, rinses, yogurt, Lysine oinment, and I drink lots of water. I've even tried Diflucan for thrush. Do you have any other tips on what I should or shouldn't eat or do? It seems I have a lot of acid in my mouth and baking soda rinse seems to help a little. Please help! Thank you.
Virginia Steen, M.D.:
It sounds like you are doing a lot of the helpful 'tricks' for managing dry mouth that are found in the Sjogren's Foundation magazine (The Moisture Seekers). There is a medication, evoxac, which can stimulate saliva production. Also if you have 'acid,' perhaps it is from reflux, and you may need to increase the proton pump inhibitor (PPI) anti-reflux medication.
It sounds like you are doing a lot of the helpful 'tricks' for managing dry mouth that are found in the Sjogren's Foundation magazine (The Moisture Seekers). There is a medication, evoxac, which can stimulate saliva production. Also if you have 'acid,' perhaps it is from reflux, and you may need to increase the proton pump inhibitor (PPI) anti-reflux medication.
Los Angeles:
I've had CREST for almost 35 years. My main problem is the GI involvment and for the past 10 years I've had problems with colon involvement (i.e. constant bloating, not hungry, consitpation, huge stomach). I have allergies to dairy and just last year was diagnosed with celiac disease. What lifestyle related things can I do and medications would you suggest?
I've had CREST for almost 35 years. My main problem is the GI involvment and for the past 10 years I've had problems with colon involvement (i.e. constant bloating, not hungry, consitpation, huge stomach). I have allergies to dairy and just last year was diagnosed with celiac disease. What lifestyle related things can I do and medications would you suggest?
Virginia Steen, M.D.:
GI involvement with the bloating can be very difficult to manage. Dietary management with small frequent feedings with attempts to find what foods you tolerate the best is possible, but difficult. Bulk, bran, etc., works best early in the disease and probably won't help now. Lactulose can help with the constipation. There are several medications, a motility drug to improve the motility (metachlopromide) but it has side effects and is often difficult to tolerate. Sometimes it is worth trying an antibiotic in case bacterial overgrowth is contributing to the 'huge stomach'.
Unfortunately, gastroenterologists and even regular rheumatologists aren't very good with management. There is a scleroderma center at UCLA and Dr. Dinesh Khanna has a special interest in GI disease.
GI involvement with the bloating can be very difficult to manage. Dietary management with small frequent feedings with attempts to find what foods you tolerate the best is possible, but difficult. Bulk, bran, etc., works best early in the disease and probably won't help now. Lactulose can help with the constipation. There are several medications, a motility drug to improve the motility (metachlopromide) but it has side effects and is often difficult to tolerate. Sometimes it is worth trying an antibiotic in case bacterial overgrowth is contributing to the 'huge stomach'.
Unfortunately, gastroenterologists and even regular rheumatologists aren't very good with management. There is a scleroderma center at UCLA and Dr. Dinesh Khanna has a special interest in GI disease.
Ann Arbor, Michigan:
How does one go about confirming or ruling out the possibility of having scleroderma? I have been suffering from chronic itching on my thighs which is most prevalent during the nighttime hours which keep me from getting adequate sleep. My physician just assumes it is dry skin, what tests or questions or other steps can I take to get some answers?
How does one go about confirming or ruling out the possibility of having scleroderma? I have been suffering from chronic itching on my thighs which is most prevalent during the nighttime hours which keep me from getting adequate sleep. My physician just assumes it is dry skin, what tests or questions or other steps can I take to get some answers?
Virginia Steen, M.D.:
Dry skin is not the primary symtpom of scleroderma. Thick skin is what the term means. If it is just on the thighs and there is no thickness or skin discoloration then it is unlikely to be scleroderma. There are no specfic tests for this type of scleroderma. The systemic form of the disease will usually begin with problems with Raynaud's (cold induced color changes of the fingers) or involvement of the hands rather than the thighs.
If you still have concerns there is a scleroderma center in Ann Arbor.
Dry skin is not the primary symtpom of scleroderma. Thick skin is what the term means. If it is just on the thighs and there is no thickness or skin discoloration then it is unlikely to be scleroderma. There are no specfic tests for this type of scleroderma. The systemic form of the disease will usually begin with problems with Raynaud's (cold induced color changes of the fingers) or involvement of the hands rather than the thighs.
If you still have concerns there is a scleroderma center in Ann Arbor.
Hunter, NY:
My wife has advanced systemic scleroderma (7-8 years). She has virtually no appetite, no energy, and frequently sleeps 18-20 hours a day. Is this a result of the desease or possibly a result of the many medications she is taking?
My wife has advanced systemic scleroderma (7-8 years). She has virtually no appetite, no energy, and frequently sleeps 18-20 hours a day. Is this a result of the desease or possibly a result of the many medications she is taking?
Virginia Steen, M.D.:
This does not sound like it is specifically related to the disease, but without knowing more information about the types of problems she has had it is hard to tell. Depression needs to be considered in anyone sleeping that much. Please make sure you doctor explains what problems she has that is causing these problems. Just blaming scleroderma for everything is not good, there may be something else going on.
This does not sound like it is specifically related to the disease, but without knowing more information about the types of problems she has had it is hard to tell. Depression needs to be considered in anyone sleeping that much. Please make sure you doctor explains what problems she has that is causing these problems. Just blaming scleroderma for everything is not good, there may be something else going on.
Naropathy:
Hi, I take gabapentin for the pain in my lower legs, but it is giving me feelings like I am going to have a seizure of some sort. I lose control of my speech, and even my hands typing. I can't take Lyrica as it makes me swell and that hurts so much. Any answers, also what do people like us take for the itching, which is sometimes really bad. Thank you.
Hi, I take gabapentin for the pain in my lower legs, but it is giving me feelings like I am going to have a seizure of some sort. I lose control of my speech, and even my hands typing. I can't take Lyrica as it makes me swell and that hurts so much. Any answers, also what do people like us take for the itching, which is sometimes really bad. Thank you.
Virginia Steen, M.D.:
You definitely need to talk to your doctor about the dose of gabapentin. We have been using that and Lyrica for the itching as well as the pain. Atarax and benadryl can help. Generally, the severe itching from early diffuse scleroderma improves over time, but that time varies from patient to patient.
You definitely need to talk to your doctor about the dose of gabapentin. We have been using that and Lyrica for the itching as well as the pain. Atarax and benadryl can help. Generally, the severe itching from early diffuse scleroderma improves over time, but that time varies from patient to patient.
Orlando, FL:
Do you think having surgery in hands deformed by scleroderma will improve the fuction of the hands and is it worth it in the long run?
Do you think having surgery in hands deformed by scleroderma will improve the fuction of the hands and is it worth it in the long run?
Virginia Steen, M.D.:
Only a very experienced hand surgeon with scleroderma patients should be consulted. The severe contractures of the fingers can sometimes be helped by fusing the middle joints in an open more neutral position. If you have reasonable motion of the hand joints, then you can still flex them and the function is better. If you get severe ulcers on the top of the knuckles, then the surgery could help that as well. As with most surgery there are no guarantees, but an experienced surgeon is critical.
Only a very experienced hand surgeon with scleroderma patients should be consulted. The severe contractures of the fingers can sometimes be helped by fusing the middle joints in an open more neutral position. If you have reasonable motion of the hand joints, then you can still flex them and the function is better. If you get severe ulcers on the top of the knuckles, then the surgery could help that as well. As with most surgery there are no guarantees, but an experienced surgeon is critical.
Haysville, Kansas:
How do I get my doctor to take my complaints of pain seriously? How do I get them to prescibe something for relief? What meds work? I have tried many with no success.
How do I get my doctor to take my complaints of pain seriously? How do I get them to prescibe something for relief? What meds work? I have tried many with no success.
Virginia Steen, M.D.:
When pain medications don't 'work' at all, it may mean that the pain is related to fibromyalgia, which characteristically does not respond to standard pain medication. Improved sleep and aerobic exercise are good approaches to that time of pain, but discuss with your doctor what the cause of the pain is.
When pain medications don't 'work' at all, it may mean that the pain is related to fibromyalgia, which characteristically does not respond to standard pain medication. Improved sleep and aerobic exercise are good approaches to that time of pain, but discuss with your doctor what the cause of the pain is.
Illinois:
My daughter was diagnosed with systemic sclerosis/scleroderma four years ago. She has no skin involvement, but has Raynaud's and very strong antibodies for systemic sclerosis. Her main complaint for the past couple of years has been pain in her hands and wrists (and to a much lesser degree in her feet). Lab work has apparently ruled out rheumatoid arthritis and osteoarthritis, but her hands are no better. She cannot make a fist, open a jar or bottle, and experiences extreme pain when her hands are even lightly bumped. Is this likely related to her scleroderma?
My daughter was diagnosed with systemic sclerosis/scleroderma four years ago. She has no skin involvement, but has Raynaud's and very strong antibodies for systemic sclerosis. Her main complaint for the past couple of years has been pain in her hands and wrists (and to a much lesser degree in her feet). Lab work has apparently ruled out rheumatoid arthritis and osteoarthritis, but her hands are no better. She cannot make a fist, open a jar or bottle, and experiences extreme pain when her hands are even lightly bumped. Is this likely related to her scleroderma?
Virginia Steen, M.D.:
Most likely. Swelling, stiffness and decreased motion in the hands and wrists are common manifestations of scleroderma. She needs to make sure she is taking some type of anti-inflammation medication (if she can tolerate it) but even more important is to do exercises to improve the mobility and strength of her hands. When you do not use your hands because they hurt, they get weaker and then they hurt even more when you do use them, so you get into a vicious circle. Occupational therapists can help with these exercise programs, but they need to be done regularly at home.
Most likely. Swelling, stiffness and decreased motion in the hands and wrists are common manifestations of scleroderma. She needs to make sure she is taking some type of anti-inflammation medication (if she can tolerate it) but even more important is to do exercises to improve the mobility and strength of her hands. When you do not use your hands because they hurt, they get weaker and then they hurt even more when you do use them, so you get into a vicious circle. Occupational therapists can help with these exercise programs, but they need to be done regularly at home.
Illinois:
I have unexplained pain everywhere. All tests show "normal." I have severe pain at night while resting and all pain medications I can't take as I have adverse reactions to them. I have been to a pain clinic. Is this normal for people with scleroderma to have severe pain? Any suggestions? Thanks.
I have unexplained pain everywhere. All tests show "normal." I have severe pain at night while resting and all pain medications I can't take as I have adverse reactions to them. I have been to a pain clinic. Is this normal for people with scleroderma to have severe pain? Any suggestions? Thanks.
Virginia Steen, M.D.:
This severe genearlized pain is not common for scleroderma. Please see some of the answers from similar questions above.
This severe genearlized pain is not common for scleroderma. Please see some of the answers from similar questions above.
Austin, TX:
I was diagnosed with scleroderma about 3 years ago. My skin has improved in looks and feel on the outside. It is beginning to look normal, but inside I still feel extremely tight; can't make a fist, not very flexible. Is there any hope for me that the inside under my skin in my arms and hands will improve any and I will regain some of my flexibility? Is there any therapy that speeds up the break up of the built up collegen?
I was diagnosed with scleroderma about 3 years ago. My skin has improved in looks and feel on the outside. It is beginning to look normal, but inside I still feel extremely tight; can't make a fist, not very flexible. Is there any hope for me that the inside under my skin in my arms and hands will improve any and I will regain some of my flexibility? Is there any therapy that speeds up the break up of the built up collegen?
Virginia Steen, M.D.:
This is not unusual. Exercise and time will continue to help the flexibility, but you do have to work at it regularly. At the moment there are no medications to break down the collagen. We keep hoping for something.
This is not unusual. Exercise and time will continue to help the flexibility, but you do have to work at it regularly. At the moment there are no medications to break down the collagen. We keep hoping for something.
Georgia:
I am in desperate need of a lung transplant, but scleroderma has caused achalasia of my esophagus and I cannot qualify for a transplant. Is anything new being offered to help correct achalasia due to scleroderma?
I am in desperate need of a lung transplant, but scleroderma has caused achalasia of my esophagus and I cannot qualify for a transplant. Is anything new being offered to help correct achalasia due to scleroderma?
Virginia Steen, M.D.:
It actually isn't achalasia but is absence of motility of the esophagus (achalasia also has spasm at the base of the esphogus). Unfortunately, none of the surgical treatments have been effective in treating scleroderma esophagus. Medication only helps partially.
The problem with the lung transplant and the esophagus problem is the very high risk of lung infection, if there is the chronic reflux associated with it. Since all sclerodema patients have some esophagus problems, your doctors should determine whether you have severe reflux.
Also there are some transplant centers who do not want to transplant any scleroderma patients, so they say they aren't eligible. You may want to consult another transplant center if your pulmonologist thinks that would be helpful.
It actually isn't achalasia but is absence of motility of the esophagus (achalasia also has spasm at the base of the esphogus). Unfortunately, none of the surgical treatments have been effective in treating scleroderma esophagus. Medication only helps partially.
The problem with the lung transplant and the esophagus problem is the very high risk of lung infection, if there is the chronic reflux associated with it. Since all sclerodema patients have some esophagus problems, your doctors should determine whether you have severe reflux.
Also there are some transplant centers who do not want to transplant any scleroderma patients, so they say they aren't eligible. You may want to consult another transplant center if your pulmonologist thinks that would be helpful.
Dana Point, CA:
I've had CREST syndrome forever, it seems, and have been able to live well with it. But now I'm getting unusual pain in my shoulder and hip joints. Even tai chi is hard on my shoulders and upper arms. Any suggestions?
I've had CREST syndrome forever, it seems, and have been able to live well with it. But now I'm getting unusual pain in my shoulder and hip joints. Even tai chi is hard on my shoulders and upper arms. Any suggestions?
Virginia Steen, M.D.:
New onset of joint problems, particularly in hips and shoulders, in someone with 'CREST forever,' may not be related to the scleroderma. You should be reevaluated by a rheumatologist to make sure it isn't something else.
New onset of joint problems, particularly in hips and shoulders, in someone with 'CREST forever,' may not be related to the scleroderma. You should be reevaluated by a rheumatologist to make sure it isn't something else.
Wilmington, North Carolina:
I am a diffuse scleroderma patient, diagnosed 3 years ago. I am on a high dose of oxycotin (40 mg, three times per day); Lyrica 300 mg; Celerbrex 200 mg -- are there reliable alternative therapies for my pain?
I am a diffuse scleroderma patient, diagnosed 3 years ago. I am on a high dose of oxycotin (40 mg, three times per day); Lyrica 300 mg; Celerbrex 200 mg -- are there reliable alternative therapies for my pain?
Virginia Steen, M.D.:
At this point in your disease, controlling the pain is very important so you can be as mobile and be able to exercise and prevent as much loss of motion as possible. Once that stage of the disease 'quiets' down, we can often decrease the amount of medication, but you are on a lot so it may not be possible. The important thing is to keep moving so you can be as functional as possible even if you have to take the medication.
At this point in your disease, controlling the pain is very important so you can be as mobile and be able to exercise and prevent as much loss of motion as possible. Once that stage of the disease 'quiets' down, we can often decrease the amount of medication, but you are on a lot so it may not be possible. The important thing is to keep moving so you can be as functional as possible even if you have to take the medication.
Arizona:
Do you know if they have found out if scleroderma is in the genes or not? The reason I ask is I have recently found out that 3 of my family members have been diagnosed with some form of this. My sister is one but she has it worse, the others are cousins.
Do you know if they have found out if scleroderma is in the genes or not? The reason I ask is I have recently found out that 3 of my family members have been diagnosed with some form of this. My sister is one but she has it worse, the others are cousins.
Kerri Connolly:
This is an area of particular interest to researchers. The University of Texas Medical School at Houston is actively studying and recruiting indivuduals for the Scleroderma Family Registry & DNA Repository. For more information on this, contact them at sclerodermaregistry@uth.tmc.edu.
This is an area of particular interest to researchers. The University of Texas Medical School at Houston is actively studying and recruiting indivuduals for the Scleroderma Family Registry & DNA Repository. For more information on this, contact them at sclerodermaregistry@uth.tmc.edu.
Los Angeles,CA:
How can I keep from getting my food stuck in my throut every time I eat? Is their a special diet I need to follow? It has been getting worse lately. Please help me.
How can I keep from getting my food stuck in my throut every time I eat? Is their a special diet I need to follow? It has been getting worse lately. Please help me.
Virginia Steen, M.D.:
The esophagus doesn't move normally and the acid refluxes into the esophagus often cause a stricture. You will need to be evaluated by a gastroenterologist with a barium swollow and an endoscopy to see what is causing your problem.
The esophagus doesn't move normally and the acid refluxes into the esophagus often cause a stricture. You will need to be evaluated by a gastroenterologist with a barium swollow and an endoscopy to see what is causing your problem.
Brasil:
What the benefits of penicillamine in scleroderma?
What the benefits of penicillamine in scleroderma?
Virginia Steen, M.D.:
Penicillamine is a medicine that has been used for EARLY diffuse scleroderma for a long time. If it is used in the early stages it may be helpful, but the clinical trials did not find that in the patients that were treated.
Penicillamine is a medicine that has been used for EARLY diffuse scleroderma for a long time. If it is used in the early stages it may be helpful, but the clinical trials did not find that in the patients that were treated.
Kentucky:
Is there a connection between scleroderma and cancer? I was diagnosed with both at same time in 2005.
Is there a connection between scleroderma and cancer? I was diagnosed with both at same time in 2005.
Virginia Steen, M.D.:
We have seen an association of breast cancer and scleroderma within a 2 year period of time. Whether this is by chance, since both affect women in the same age group, or whether there is a true association it is not clear.
There also may be an association with lung cancer particuarly in people with severe fibrosis. Some believe that there may be an association with cancer of the esophagus because of the increase in Barrett's esophagus but clinically we haven't seen any significant increases.
We have seen an association of breast cancer and scleroderma within a 2 year period of time. Whether this is by chance, since both affect women in the same age group, or whether there is a true association it is not clear.
There also may be an association with lung cancer particuarly in people with severe fibrosis. Some believe that there may be an association with cancer of the esophagus because of the increase in Barrett's esophagus but clinically we haven't seen any significant increases.
Tarzana, CA:
I have heard that lupus may be drug induced in some cases. Has this been a consideration in some cases of scleroderma?
I have heard that lupus may be drug induced in some cases. Has this been a consideration in some cases of scleroderma?
Virginia Steen, M.D.:
There are some scleroderma-like illnesses that may be from drugs, but not typical systemic sclerosis. The most recent one is something called nephrogenic systemic fibrosis from MRI dye, gadolinium in patients with kidney problems.
There are some scleroderma-like illnesses that may be from drugs, but not typical systemic sclerosis. The most recent one is something called nephrogenic systemic fibrosis from MRI dye, gadolinium in patients with kidney problems.
Warren County, NC:
How do you know you have it?
How do you know you have it?
Kerri Connolly:
The diagnostic process may require consultation with rheumatologists (arthritis specialists), and/or dermatologists (skin specialists) and require blood studies and numerous other specialized tests depending upon which organs are affected.
Visit www.scleroderma.org for more information on scleroderma.
The diagnostic process may require consultation with rheumatologists (arthritis specialists), and/or dermatologists (skin specialists) and require blood studies and numerous other specialized tests depending upon which organs are affected.
Visit www.scleroderma.org for more information on scleroderma.
Phoenix:
My boyfriend has scleroderma and we have sex on a regular basis, even oral sex. He leaks sometimes and I wonder if the DNA in his leakage would get into my blood stream and eventually I would develop scleroderma. Is this possible? Thanks.
My boyfriend has scleroderma and we have sex on a regular basis, even oral sex. He leaks sometimes and I wonder if the DNA in his leakage would get into my blood stream and eventually I would develop scleroderma. Is this possible? Thanks.
Kerri Connolly:
Thank you for the question. Scleroderma is not contagious, it is not infectious, it is not cancerous or malignant. Scleroderma is an auto-immune disease in the rheumatic family.
Thank you for the question. Scleroderma is not contagious, it is not infectious, it is not cancerous or malignant. Scleroderma is an auto-immune disease in the rheumatic family.
Long Island, NY:
Are there statistics availble regarding women with Scleroderma and pregnancy? Specifically those with secondary PAH (pulmonary arterial hypertension)? Thank you.
Are there statistics availble regarding women with Scleroderma and pregnancy? Specifically those with secondary PAH (pulmonary arterial hypertension)? Thank you.
Virginia Steen, M.D.:
Pregnancy and pulmonary hypertension are very difficult to manage because of the increased blood flow and stress on the heart during pregnancy. There are several excellent pulmonary hypertension centers in NYC and before considering pregnancy I would consult with one of them. Scleroderma and pregnancy except in very early disease or in patients with severe organ involvement like pulmonary hypertension is high risk but generally manageable, so it depends on the severity of your lung disease.
Pregnancy and pulmonary hypertension are very difficult to manage because of the increased blood flow and stress on the heart during pregnancy. There are several excellent pulmonary hypertension centers in NYC and before considering pregnancy I would consult with one of them. Scleroderma and pregnancy except in very early disease or in patients with severe organ involvement like pulmonary hypertension is high risk but generally manageable, so it depends on the severity of your lung disease.
Moderator:
That concludes our time for this discussion. We would like to apologize for the technical problems we encountered. The interest in this topic was so high that we had a record number of visitors and questions, which slowed our system down to a crawl.
Thank you again to Dr. Virginia Steen and Kerri Connolly for taking time out of their busy schedules to answer more than 50 of your questions.
Be sure to talk to your own doctor and other health care providers if you have any questions about diagnosis and treatment of scleroderma or other illnesses. You may also want to check the Scleroderma Foundation Web site for additional resources.
That concludes our time for this discussion. We would like to apologize for the technical problems we encountered. The interest in this topic was so high that we had a record number of visitors and questions, which slowed our system down to a crawl.
Thank you again to Dr. Virginia Steen and Kerri Connolly for taking time out of their busy schedules to answer more than 50 of your questions.
Be sure to talk to your own doctor and other health care providers if you have any questions about diagnosis and treatment of scleroderma or other illnesses. You may also want to check the Scleroderma Foundation Web site for additional resources.
Please Note: Guests and hosts retain editorial control over discussions and choose the most relevant questions for guests and hosts; guests and hosts can decline to answer questions. Society for Women’s Health Research is not responsible for any content posted by third parties.
