Sorry, to hear about all of your conditions. If you do not mind sharing, how did you notice mild ischemic strokes? What were the symptoms? Did you have numbness and tingling just on one side, or symmetrical, on both sides of the body?
I may be going through some episodes that feel like TIA, but my symptoms are symmetrical.
@altabiznet
I had balance and talking issue. Ischemic strokes. Not a big one yet thankfully as I've got most of balance back. Talking is ok. I forget words at times. I had aphasia making all kinds of noises and be vibrating etc. I'm glad that's mostly gone.. I dont want another!!@
The feeling of "carrying weights" may be a sign of worsening inflammation, which is a part of scleroderma progression. It also causes nerve inflammation and sensation of burning. A rash on the hand - may be a sign of vasculitis. Sometimes, low dose prednisone is prescribed for autoimmune neuropathy. I would ask my rheumatologist if prednisone taken with Mycophenolate is indicated in scleroderma.
Have you tried ibuprofen? Not a cure but may help with the symptoms of not feeling well during flare-ups. Coated formulas or soft gels are better for the stomach. Ask your doctor first if it is OK to take it with Mycophenolate. She/he can also prescribe Ibuprofen Coated ER 600mg formula available only by Rx.
Living with Scleroderma is a difficult journey, and it takes time for Mycophenolate to work. You may feel better after 1-2 months on the drug. It slows down inflammation and disease progression. Other medications prescribed in Scleroderma, like methotrexate (for arthritis), also may be added to Mycophenolate by your doctor. This usually happens when no response in 3-6 months on single agent therapy. Methotrexate is a chemo and has some unpleasant side effects. A Biologic drug Actemra injection (RA, SS) is prescribed only for interstitial lung disease in scleroderma (ILD). It also works on skin and joints. If well tolerated, may be a good choice. But it is prescribed only when ILD is documented.
Please keep in touch with sharing your symptoms and keep posting your progress with Mycophenolate. Best regards
@altabiznet Thank you so much for responding and sharing information about the medication I am currently on! How long have you had Scleroderma.
I will ask my doctor about the ibuprofen. I hope you're having a good day today!!
Hello, thank you for your attention. I don't have many symptoms, just Raynaud's phenomenon and lung inflammation. All my tests come back normal, but the inflammation, although it had decreased slightly to 21 previously, has risen again to 36. I have no problem breathing and my oxygen levels are fine, but I feel quite a bit of pain in my back.
Good to hear that you are doing fine.
Unfortunately, pain in the back may be a sign of one of the autoimmune conditions that coincide with scleroderma. Your rheumatologist can order blood tests for relevant biomarkers. HLAB27 can be one of them.
Implications of a Positive Result
A positive HLA-B27 test means that the individual carries the HLA-B27 gene variant. This genetic trait is associated with a higher likelihood of developing certain inflammatory conditions, particularly those affecting the spine, joints, eyes, and sometimes the intestines.
Good to hear that you are doing fine.
Unfortunately, pain in the back may be a sign of one of the autoimmune conditions that coincide with scleroderma. Your rheumatologist can order blood tests for relevant biomarkers. HLAB27 can be one of them.
Implications of a Positive Result
A positive HLA-B27 test means that the individual carries the HLA-B27 gene variant. This genetic trait is associated with a higher likelihood of developing certain inflammatory conditions, particularly those affecting the spine, joints, eyes, and sometimes the intestines.
Hi, thank you for your attention. I apologize if I didn't explain myself well. The back pain is on the sides, mostly the left side, I imagine due to inflammation of the lungs.
@altabiznet Thank you so much for responding and sharing information about the medication I am currently on! How long have you had Scleroderma.
I will ask my doctor about the ibuprofen. I hope you're having a good day today!!
I have had scleroderma for the past 4 years now. Tried multiple approved drugs but still was progressing. Then a year ago underwent autologous stem cell transplant for scleroderma, which did not help but produced many complications. I am back on Humira for arthritis and will be starting Cellcept soon for scleroderma. I hope there may be better options in research and clinical trials with newer medications currently under development.
Please keep posting your experience with medications and your progress, activity levels, and symptoms. This will help us all to stay on track. Best regards
Actemra injection can be prescribed in cases like yours, with interstitial lung disease ILD progression on methotrexate and Cellcept. May need a Rheumatologist to get it prescribed but ask you PCP. If you have fluid, your PCP can prescribe a diuretic, like spironolactone, hydrochlorothiazide, or furosemide. Spironolactone is easier to tolerate.
Actemra is approved for both RA and scleroderma ILD. Maybe your PCP can prescribe Actemra. With ILD you can also see a pulmonologist. They can also prescribe OFEV - anti fibrotic drug for ILD, or possibly Actemra as well. Try to get a referral to pulmonology, if rheumatology is not available. Just a thought.
CAR-T therapy is a new treatment under development in clinical research. There are few studies specific to systemic sclerosis - most of them are in lupus or multiple autoimmune diseases, including systemic sclerosis. This means that it is known yet for which condition the treatment is going to work. Most clinical trials are early stage I and II, but you can search for local clinical sites at this link: https://clinicaltrials.gov/search
I have had scleroderma for the past 4 years now. Tried multiple approved drugs but still was progressing. Then a year ago underwent autologous stem cell transplant for scleroderma, which did not help but produced many complications. I am back on Humira for arthritis and will be starting Cellcept soon for scleroderma. I hope there may be better options in research and clinical trials with newer medications currently under development.
Please keep posting your experience with medications and your progress, activity levels, and symptoms. This will help us all to stay on track. Best regards
@altabiznet Hi, I'm sorry you haven't been able to control the disease yet. What type of scleroderma do you have, systemic? Given the complexity of the disease, can you indicate the signs of progression, such as scarring in the lungs or other affected organs? Treatment is generally based on that.
@altabiznet Hi, I'm sorry you haven't been able to control the disease yet. What type of scleroderma do you have, systemic? Given the complexity of the disease, can you indicate the signs of progression, such as scarring in the lungs or other affected organs? Treatment is generally based on that.
I have systemic sclerosis with skin, joints (inflammatory arthritis) and GI (IBS) involvement. It is multi-system involvement, possibly not only scleroderma. Lungs scarring or ILD was present but low when I went into the transplant. Standard treatments, like Methotrexate followed by Cellcept did not stop progression. Actemra was working but produced difficult GI toxicities. Some people with ILD may do well on Actemra, if tolerated long-term. I saw some skin reversal and less joints inflammation after 5 months on treatment.
I was fully functional and independent before the transplant. It was autologous stem cell transplant for Scleroderma (done at Duke). The expectations from the transplant were that at a minimum it should stop disease progression. However, Raynaud, vasculitis, inflammation, lung, skin and joints kept progressing post-transplant. Additional post-transplant symptoms - neuropathy and muscle weakness with chronic fatigue. I was off all medications for 14 months post-transplant, as required to restore bone marrow. Rapid disease progression started at around 12 months off meds. Unfortunately, the transplant did not work but produced extreme long-term fatigue and other complications post high dose chemo, radiation and high dose steroids, that were a part of the conditioning regimen. I was in a much better shape before the transplant. May need to be careful with high-risk treatment choices, as those do not always work, but may take you off other treatments.
I hope new treatments and medications in clinical trials may be a better option. Of course, possible toxicities to be considered.
Now I am going back to standard therapies for scleroderma until something new gets approved. Hope, this helps.
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@altabiznet
I had balance and talking issue. Ischemic strokes. Not a big one yet thankfully as I've got most of balance back. Talking is ok. I forget words at times. I had aphasia making all kinds of noises and be vibrating etc. I'm glad that's mostly gone.. I dont want another!!@
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3 Reactions@altabiznet Thank you so much for responding and sharing information about the medication I am currently on! How long have you had Scleroderma.
I will ask my doctor about the ibuprofen. I hope you're having a good day today!!
@itat
Good to hear that you are doing fine.
Unfortunately, pain in the back may be a sign of one of the autoimmune conditions that coincide with scleroderma. Your rheumatologist can order blood tests for relevant biomarkers. HLAB27 can be one of them.
Implications of a Positive Result
A positive HLA-B27 test means that the individual carries the HLA-B27 gene variant. This genetic trait is associated with a higher likelihood of developing certain inflammatory conditions, particularly those affecting the spine, joints, eyes, and sometimes the intestines.
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2 ReactionsHi, thank you for your attention. I apologize if I didn't explain myself well. The back pain is on the sides, mostly the left side, I imagine due to inflammation of the lungs.
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1 Reaction@jandy88us
I have had scleroderma for the past 4 years now. Tried multiple approved drugs but still was progressing. Then a year ago underwent autologous stem cell transplant for scleroderma, which did not help but produced many complications. I am back on Humira for arthritis and will be starting Cellcept soon for scleroderma. I hope there may be better options in research and clinical trials with newer medications currently under development.
Please keep posting your experience with medications and your progress, activity levels, and symptoms. This will help us all to stay on track. Best regards
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Helpful -
Hug
1 Reaction@kimberlyf
Actemra injection can be prescribed in cases like yours, with interstitial lung disease ILD progression on methotrexate and Cellcept. May need a Rheumatologist to get it prescribed but ask you PCP. If you have fluid, your PCP can prescribe a diuretic, like spironolactone, hydrochlorothiazide, or furosemide. Spironolactone is easier to tolerate.
Actemra is approved for both RA and scleroderma ILD. Maybe your PCP can prescribe Actemra. With ILD you can also see a pulmonologist. They can also prescribe OFEV - anti fibrotic drug for ILD, or possibly Actemra as well. Try to get a referral to pulmonology, if rheumatology is not available. Just a thought.
CAR-T therapy is a new treatment under development in clinical research. There are few studies specific to systemic sclerosis - most of them are in lupus or multiple autoimmune diseases, including systemic sclerosis. This means that it is known yet for which condition the treatment is going to work. Most clinical trials are early stage I and II, but you can search for local clinical sites at this link:
https://clinicaltrials.gov/search
@altabiznet Hi, I'm sorry you haven't been able to control the disease yet. What type of scleroderma do you have, systemic? Given the complexity of the disease, can you indicate the signs of progression, such as scarring in the lungs or other affected organs? Treatment is generally based on that.
View Translation
@itat
I have systemic sclerosis with skin, joints (inflammatory arthritis) and GI (IBS) involvement. It is multi-system involvement, possibly not only scleroderma. Lungs scarring or ILD was present but low when I went into the transplant. Standard treatments, like Methotrexate followed by Cellcept did not stop progression. Actemra was working but produced difficult GI toxicities. Some people with ILD may do well on Actemra, if tolerated long-term. I saw some skin reversal and less joints inflammation after 5 months on treatment.
I was fully functional and independent before the transplant. It was autologous stem cell transplant for Scleroderma (done at Duke). The expectations from the transplant were that at a minimum it should stop disease progression. However, Raynaud, vasculitis, inflammation, lung, skin and joints kept progressing post-transplant. Additional post-transplant symptoms - neuropathy and muscle weakness with chronic fatigue. I was off all medications for 14 months post-transplant, as required to restore bone marrow. Rapid disease progression started at around 12 months off meds. Unfortunately, the transplant did not work but produced extreme long-term fatigue and other complications post high dose chemo, radiation and high dose steroids, that were a part of the conditioning regimen. I was in a much better shape before the transplant. May need to be careful with high-risk treatment choices, as those do not always work, but may take you off other treatments.
I hope new treatments and medications in clinical trials may be a better option. Of course, possible toxicities to be considered.
Now I am going back to standard therapies for scleroderma until something new gets approved. Hope, this helps.