What are your symptoms? I have very high antibodies to centromere so am being monitored. Some of us have high antibodies but symptoms don't match and some have symptoms but no positive blood work. How were you diagnosed and which kind of scleroderma? Was it your ScL antibody or centromere? Do you have skin symptoms?
@kimberlyfarasyn Welcome to Mayo Clinic Connect. This is a great group of people and I’m sure that they will help you! But first, can you tell us about the multiple issues you are dealing with? How long have you had Sclerosis/systemic sclerosis? Are you receiving treatment ?
I was diagnosed with systemic sclerosis 2000, but I had symptoms (Raynaud's, hardening and thickened areas that would come and go) since 1980. In 2000 my fingers and wrists started looking like puffy paws. That is when I was officially diagnosed. I raised a severely disabled son so pretty much ignored my own health for 20 years. I am no longer able to ignore the overwhelming fatigue, pain, joint stiffness and bowel issues. I just learned that my ANA numbers are over the readable limit at the rheumatologist's office that I just recently began seeing. I have been prescribed Cellcept, but I have not started taking it due to the very frightening potential side effects. I am vegan, try not to eat any sweets or processed food, exercise daily and try to eliminate stress, but I would love to hear what has worked for other people, and if anyone else has taken Cellcept for systemic sclerosis.
I was diagnosed with systemic sclerosis 2000, but I had symptoms (Raynaud's, hardening and thickened areas that would come and go) since 1980. In 2000 my fingers and wrists started looking like puffy paws. That is when I was officially diagnosed. I raised a severely disabled son so pretty much ignored my own health for 20 years. I am no longer able to ignore the overwhelming fatigue, pain, joint stiffness and bowel issues. I just learned that my ANA numbers are over the readable limit at the rheumatologist's office that I just recently began seeing. I have been prescribed Cellcept, but I have not started taking it due to the very frightening potential side effects. I am vegan, try not to eat any sweets or processed food, exercise daily and try to eliminate stress, but I would love to hear what has worked for other people, and if anyone else has taken Cellcept for systemic sclerosis.
@andielars25 I have been taking CellCept for 3+years for a different autoimmune disease, Clippers For at least 2years, i was taking the stronger form of cell cept (mychopenylate mofitil) but got diarrhea which cleared up when I was switched to a different type of cell cept (mycophenolic acid). I have not had any other side effects. It has been a great drug for me in that it will save me from prednisone. I am taking Rituximab since I only have 1 more week of prednisone.
Talk to your doctor. And have faith! Think of yourself as someone who doesn’t have time for all the nasty side effects!
@andielars25 I have been taking CellCept for 3+years for a different autoimmune disease, Clippers For at least 2years, i was taking the stronger form of cell cept (mychopenylate mofitil) but got diarrhea which cleared up when I was switched to a different type of cell cept (mycophenolic acid). I have not had any other side effects. It has been a great drug for me in that it will save me from prednisone. I am taking Rituximab since I only have 1 more week of prednisone.
Talk to your doctor. And have faith! Think of yourself as someone who doesn’t have time for all the nasty side effects!
Thank you for letting me know that CellCept has been working for you for 3+ years. I have definitely been living with a mindset that I don't have time for systemic sclerosis, or at least doing a great job of ignoring my symptoms, so I will try to continue that idea with any side effects from CellCept. What a great way to get through so many things. Congratulations on only having one more week of prednisone.
Thank you for letting me know that CellCept has been working for you for 3+ years. I have definitely been living with a mindset that I don't have time for systemic sclerosis, or at least doing a great job of ignoring my symptoms, so I will try to continue that idea with any side effects from CellCept. What a great way to get through so many things. Congratulations on only having one more week of prednisone.
I was recently diagnosed with systemic scleroderma too. I have anti-centrome antibodies off the charts. I was also prescribed Cellcept but am scared of the side effects- including reactivation of past viral infections so have not picked up the prescription. I was able to get an appointment at the Stanford Scleroderma center in August. So far Raynaud's and telangiectasia on face and shoulders. My heart also has many preventricular contractions, but lung function still fine. Low Dose naltrexone reduced a super high hematocrit and the hand puffiness.
I was recently diagnosed with systemic scleroderma too. I have anti-centrome antibodies off the charts. I was also prescribed Cellcept but am scared of the side effects- including reactivation of past viral infections so have not picked up the prescription. I was able to get an appointment at the Stanford Scleroderma center in August. So far Raynaud's and telangiectasia on face and shoulders. My heart also has many preventricular contractions, but lung function still fine. Low Dose naltrexone reduced a super high hematocrit and the hand puffiness.
I will have a CT, pulmonary profusion and cardiac echo on May 12th, but my rheumatologist wants me to start the CellCept now based on my (also off the charts) numbers and my amazingly puffy fingers and hands. I'm thinking I may wait until after we get the results of those tests before starting. I've been uninsured or underinsured for a long time so I'm not even certain how long my numbers have been super high, and I've just gotten in the habit of hiding my hands. It's funny how people used to look at me weird, and comment because my hands were frequently purple or deathly white, and now they do because of their size (and I live in WV so that's saying something)
Low dose Naltrexone sounds scary too, but if it's helping with hematocrit levels and hand puffiness, and not causing awful side effects then that is great. Let me know if you decide to start CellCept. I'll let you know how my experience goes as well.
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What are your symptoms? I have very high antibodies to centromere so am being monitored. Some of us have high antibodies but symptoms don't match and some have symptoms but no positive blood work. How were you diagnosed and which kind of scleroderma? Was it your ScL antibody or centromere? Do you have skin symptoms?
Welcome, @melody0808. I moved your comment about scleroderma to this existing discussion:
- Scleroderma (Systemic Sclerosis): Anyone else? https://connect.mayoclinic.org/discussion/sclerodermasystemic-sclerosis/
I did this so you can connect with members like @kimberlyf @robinlundblade @slkanowitz @mshutch and more.
Melody, this is a new diagnosis for you. Have you discussed management and treatment options with your team? What are the next steps?
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2 ReactionsI was diagnosed with systemic sclerosis 2000, but I had symptoms (Raynaud's, hardening and thickened areas that would come and go) since 1980. In 2000 my fingers and wrists started looking like puffy paws. That is when I was officially diagnosed. I raised a severely disabled son so pretty much ignored my own health for 20 years. I am no longer able to ignore the overwhelming fatigue, pain, joint stiffness and bowel issues. I just learned that my ANA numbers are over the readable limit at the rheumatologist's office that I just recently began seeing. I have been prescribed Cellcept, but I have not started taking it due to the very frightening potential side effects. I am vegan, try not to eat any sweets or processed food, exercise daily and try to eliminate stress, but I would love to hear what has worked for other people, and if anyone else has taken Cellcept for systemic sclerosis.
-
Like -
Helpful -
Hug
2 Reactions@andielars25 I have been taking CellCept for 3+years for a different autoimmune disease, Clippers For at least 2years, i was taking the stronger form of cell cept (mychopenylate mofitil) but got diarrhea which cleared up when I was switched to a different type of cell cept (mycophenolic acid). I have not had any other side effects. It has been a great drug for me in that it will save me from prednisone. I am taking Rituximab since I only have 1 more week of prednisone.
Talk to your doctor. And have faith! Think of yourself as someone who doesn’t have time for all the nasty side effects!
-
Like -
Helpful -
Hug
1 ReactionThank you for letting me know that CellCept has been working for you for 3+ years. I have definitely been living with a mindset that I don't have time for systemic sclerosis, or at least doing a great job of ignoring my symptoms, so I will try to continue that idea with any side effects from CellCept. What a great way to get through so many things. Congratulations on only having one more week of prednisone.
I was recently diagnosed with systemic scleroderma too. I have anti-centrome antibodies off the charts. I was also prescribed Cellcept but am scared of the side effects- including reactivation of past viral infections so have not picked up the prescription. I was able to get an appointment at the Stanford Scleroderma center in August. So far Raynaud's and telangiectasia on face and shoulders. My heart also has many preventricular contractions, but lung function still fine. Low Dose naltrexone reduced a super high hematocrit and the hand puffiness.
I will have a CT, pulmonary profusion and cardiac echo on May 12th, but my rheumatologist wants me to start the CellCept now based on my (also off the charts) numbers and my amazingly puffy fingers and hands. I'm thinking I may wait until after we get the results of those tests before starting. I've been uninsured or underinsured for a long time so I'm not even certain how long my numbers have been super high, and I've just gotten in the habit of hiding my hands. It's funny how people used to look at me weird, and comment because my hands were frequently purple or deathly white, and now they do because of their size (and I live in WV so that's saying something)
Low dose Naltrexone sounds scary too, but if it's helping with hematocrit levels and hand puffiness, and not causing awful side effects then that is great. Let me know if you decide to start CellCept. I'll let you know how my experience goes as well.