Hi I also have systemic sclera and my dr wants to put me on nycophenate. I really don’t know why. I really don’t have any physical conditions from it yet. Was diagnosed 1 yr ago. Are you experiencing any side effects from the new med? Do you have Raymond’s also?
@eghclark Good morning, I am so sorry to hear that! I too was diagnosed with Systemic Sclerosis a couple of months ago. I've been battling strange symptoms for a few years now. My new rheumatologist prescribed Mycophenolate for now. I have not noticed any real difference, but she believes it'll be a long term medication. My worse symptoms are burning in my head, mouth and legs. What symptoms are you dealing with?
Have you checked out the National Scleroderma Foundation? They have lots of information.
I pray you find some peace and comfort.
Burning sensation may be a sign of nerve damage from inflammation. You may want to see a neurologist as well.
What is your Mycophenolate dose? Any side effects? I may be starting it soon.
What is your skin thickening pattern like? Are hands around wrists getting swollen with skin tightening that is making it hard to do things?
Do you have joint inflammation with skin darkening around wrists, knees ankles?
Any insights will be helpful. Thanks
Burning sensation may be a sign of nerve damage from inflammation. You may want to see a neurologist as well.
What is your Mycophenolate dose? Any side effects? I may be starting it soon.
What is your skin thickening pattern like? Are hands around wrists getting swollen with skin tightening that is making it hard to do things?
Do you have joint inflammation with skin darkening around wrists, knees ankles?
Any insights will be helpful. Thanks
@altabiznet GOOD MORNING,
I WAS ALSO DIAGNOSED WITH SMALL FIBER NEUROPATHY AND CUTANEOUS VASCULITIS.
I DO HAVE NERVE DAMAGE DISEASE AS MY NEUROLOGIST EXPLAINED IT TO ME. RIGHT NOW I AM TAKING 500MG OF MYCOPHENOLATE IN THE MORNING AND 500MG AT NIGHT. I HAVEN'T REALLY NOTICED ANY SIDE EFFECTS BUT I HAVEN'T NOTICED IMPROVEMENTS EITHER.
I HAVE A BIT OF A RASH ON TOP OF MY RIGHT HAND. IT'S A LITTLE HARDENED BUT NOT TERRIBLE. I HAVEN'T NOTICED ANY DARKENING ON MY WRISTS, KNEES OR ANKLES. I DO HAVE JOINT INFLAMMATION WHICH IS WORSE ON SOME DAYS.
MY WORST SYMPTOMS RIGHT NOW ARE THE FATIGUE AND BURNING IN MY HEAD, MY MOUTH AND MY LEGS.
THE LAST FEW DAYS I HAVE ALSO BEEN FEELING HEAVY LIKE I'M CARRYING WEIGHTS AROUND ON MY BODY.
I PRAY YOU FIND SOME RELIEF SOON. PLEASE STAY IN TOUCH! IT'S A BLESSING TO CONNECT WITH PEOPLE WHO ARE FEELING SOME OF WHAT YOU'RE FEELING!
Hi ,
I've been diagnosed with limited scleroderma, crest as well... I am switching Dr's to John Hopkins though. I'll be retested and taken better care of. I also have 3 places, Tumors with anticarcinoma ( spelling I'm sure is Wrong)
Cancer. Just starting the treatment process next week. Port in Monday Chemo first infusion Wednesday... I also have Raynouds and sjögren's syndrome plus antiphospholipid syndrome and that is scarry because I've had several ischemic strokes and so I'm on blood thinner and a statin as well. I'm scared of a big stroke! All the ones I've had so far are mild ones and usually takes a few months to rehab back. Speech , memory and balance.. Take care!!
Hi ,
I've been diagnosed with limited scleroderma, crest as well... I am switching Dr's to John Hopkins though. I'll be retested and taken better care of. I also have 3 places, Tumors with anticarcinoma ( spelling I'm sure is Wrong)
Cancer. Just starting the treatment process next week. Port in Monday Chemo first infusion Wednesday... I also have Raynouds and sjögren's syndrome plus antiphospholipid syndrome and that is scarry because I've had several ischemic strokes and so I'm on blood thinner and a statin as well. I'm scared of a big stroke! All the ones I've had so far are mild ones and usually takes a few months to rehab back. Speech , memory and balance.. Take care!!
@altabiznet GOOD MORNING,
I WAS ALSO DIAGNOSED WITH SMALL FIBER NEUROPATHY AND CUTANEOUS VASCULITIS.
I DO HAVE NERVE DAMAGE DISEASE AS MY NEUROLOGIST EXPLAINED IT TO ME. RIGHT NOW I AM TAKING 500MG OF MYCOPHENOLATE IN THE MORNING AND 500MG AT NIGHT. I HAVEN'T REALLY NOTICED ANY SIDE EFFECTS BUT I HAVEN'T NOTICED IMPROVEMENTS EITHER.
I HAVE A BIT OF A RASH ON TOP OF MY RIGHT HAND. IT'S A LITTLE HARDENED BUT NOT TERRIBLE. I HAVEN'T NOTICED ANY DARKENING ON MY WRISTS, KNEES OR ANKLES. I DO HAVE JOINT INFLAMMATION WHICH IS WORSE ON SOME DAYS.
MY WORST SYMPTOMS RIGHT NOW ARE THE FATIGUE AND BURNING IN MY HEAD, MY MOUTH AND MY LEGS.
THE LAST FEW DAYS I HAVE ALSO BEEN FEELING HEAVY LIKE I'M CARRYING WEIGHTS AROUND ON MY BODY.
I PRAY YOU FIND SOME RELIEF SOON. PLEASE STAY IN TOUCH! IT'S A BLESSING TO CONNECT WITH PEOPLE WHO ARE FEELING SOME OF WHAT YOU'RE FEELING!
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
Hi ,
I've been diagnosed with limited scleroderma, crest as well... I am switching Dr's to John Hopkins though. I'll be retested and taken better care of. I also have 3 places, Tumors with anticarcinoma ( spelling I'm sure is Wrong)
Cancer. Just starting the treatment process next week. Port in Monday Chemo first infusion Wednesday... I also have Raynouds and sjögren's syndrome plus antiphospholipid syndrome and that is scarry because I've had several ischemic strokes and so I'm on blood thinner and a statin as well. I'm scared of a big stroke! All the ones I've had so far are mild ones and usually takes a few months to rehab back. Speech , memory and balance.. Take care!!
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.
@jandy88us
Thank you! ☺️
No one has replied they are going through something similar so I could feel better about it all.. 4 tumors, one that they think is benign because so different.. it will be checked though. All will be. I hope and pray treatable! My daughter is a PA in upper and lower GI. It's flipping her out as she has a couple of autoimmune diseases herself.. AC a big one. Nothing I can do , but hug her.. we are very close. She watches over me as best she can.. I thank you again!! 😊
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
Thank you so much for your response!
I will definitely ask my doctor at the next appt.It makes such a difference to connect with others on this journey! How are you doing?
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.
Connect
Connect
Like
Helpful
Hug
Hi I also have systemic sclera and my dr wants to put me on nycophenate. I really don’t know why. I really don’t have any physical conditions from it yet. Was diagnosed 1 yr ago. Are you experiencing any side effects from the new med? Do you have Raymond’s also?
@jandy88us
Burning sensation may be a sign of nerve damage from inflammation. You may want to see a neurologist as well.
What is your Mycophenolate dose? Any side effects? I may be starting it soon.
What is your skin thickening pattern like? Are hands around wrists getting swollen with skin tightening that is making it hard to do things?
Do you have joint inflammation with skin darkening around wrists, knees ankles?
Any insights will be helpful. Thanks
-
Like -
Helpful -
Hug
1 Reaction@altabiznet GOOD MORNING,
I WAS ALSO DIAGNOSED WITH SMALL FIBER NEUROPATHY AND CUTANEOUS VASCULITIS.
I DO HAVE NERVE DAMAGE DISEASE AS MY NEUROLOGIST EXPLAINED IT TO ME. RIGHT NOW I AM TAKING 500MG OF MYCOPHENOLATE IN THE MORNING AND 500MG AT NIGHT. I HAVEN'T REALLY NOTICED ANY SIDE EFFECTS BUT I HAVEN'T NOTICED IMPROVEMENTS EITHER.
I HAVE A BIT OF A RASH ON TOP OF MY RIGHT HAND. IT'S A LITTLE HARDENED BUT NOT TERRIBLE. I HAVEN'T NOTICED ANY DARKENING ON MY WRISTS, KNEES OR ANKLES. I DO HAVE JOINT INFLAMMATION WHICH IS WORSE ON SOME DAYS.
MY WORST SYMPTOMS RIGHT NOW ARE THE FATIGUE AND BURNING IN MY HEAD, MY MOUTH AND MY LEGS.
THE LAST FEW DAYS I HAVE ALSO BEEN FEELING HEAVY LIKE I'M CARRYING WEIGHTS AROUND ON MY BODY.
I PRAY YOU FIND SOME RELIEF SOON. PLEASE STAY IN TOUCH! IT'S A BLESSING TO CONNECT WITH PEOPLE WHO ARE FEELING SOME OF WHAT YOU'RE FEELING!
-
Like -
Helpful -
Hug
3 ReactionsHi ,
I've been diagnosed with limited scleroderma, crest as well... I am switching Dr's to John Hopkins though. I'll be retested and taken better care of. I also have 3 places, Tumors with anticarcinoma ( spelling I'm sure is Wrong)
Cancer. Just starting the treatment process next week. Port in Monday Chemo first infusion Wednesday... I also have Raynouds and sjögren's syndrome plus antiphospholipid syndrome and that is scarry because I've had several ischemic strokes and so I'm on blood thinner and a statin as well. I'm scared of a big stroke! All the ones I've had so far are mild ones and usually takes a few months to rehab back. Speech , memory and balance.. Take care!!
-
Like -
Helpful -
Hug
3 Reactions@taylor05 Good morning,
I am saying a prayer for you!! That is a lot to take in.
Take good care of yourself and stay in touch!
@jandy88us
@jandy88us
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
@taylor05
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.
@jandy88us
Thank you! ☺️
No one has replied they are going through something similar so I could feel better about it all.. 4 tumors, one that they think is benign because so different.. it will be checked though. All will be. I hope and pray treatable! My daughter is a PA in upper and lower GI. It's flipping her out as she has a couple of autoimmune diseases herself.. AC a big one. Nothing I can do , but hug her.. we are very close. She watches over me as best she can.. I thank you again!! 😊
-
Like -
Helpful -
Hug
2 ReactionsThank you so much for your response!
I will definitely ask my doctor at the next appt.It makes such a difference to connect with others on this journey! How are you doing?
Sent from Yahoo Mail for iPhone
-
Like -
Helpful -
Hug
1 ReactionHello, 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.
View Translation