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.
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.
Have you started Cellcept? I'm still on LDN, but had a few breaks due to surgery. My hands have soft skin and the part of the finger closest to my hand. My finger tips are still stiff, especially on my right hand ( my injured arm). What about LDN is scary to you?
Have you started Cellcept? I'm still on LDN, but had a few breaks due to surgery. My hands have soft skin and the part of the finger closest to my hand. My finger tips are still stiff, especially on my right hand ( my injured arm). What about LDN is scary to you?
I have chosen not to start Cellcept. I have been following an AIP diet for almost 3 months that is supposed to help with inflammation and gut repair. My hands are still quite swollen, but I definitely feel better. I suppose I am hesitant to be on any sort of medication. I tend to be one of the people who are highly affected by medications and end up with all of the bad side effects. I suppose if I am able to find a provider that knows what they are doing I should at least try it.
I appreciate you responding.
I have been seeing a rheumatologist for 3 years now..(I live very rural and not many in this area)..the 1st time I saw him he was on a TV (he also works at a VA in NY..I live in OK). Prior to my visit he required 18 vials of blood for blood work.. I analyzed my results and found a SCL 70 1.0 Pos /Homogeneous titer.. I asked him alot of questions.. he asked me "why are you asking me questions my medical students should be asking? (Well because I didn't when my husband had cancer..and he died) so then he started to cry and proclaimed it a miracle and said I don't have it.. and we Praised the Lord! (And I threw out the hydroxychloroquine pills he had sent ..prior to my visit ..and after having my eyes cleared for the meds..and a $600 new pair of glasses). 2nd year same thing only SCL70 was now 3.0 pos.. this time I saw him in person.same thing.. "miracle you don't have it".. THIS year.. after so many horrible years of being so ill and developing pyloric stenosis..which he said "gastro" had to deal with. he had an assistant..who didn't order the usual 18 viles of blood work and I had to request the SCL70 .. which was now down to 2.0 pos.. this young man told me "we can't rule it out"..and since my significant other was with me.. (he lost his wife and a daughter..and he's had enough loss in his life..didn't want to frighten him) I replied.. "wouldn't I be losing weight? (I had been down to 98 and 104 for along time.. now up to 157 ..too fat!) and he said "not necessarily" ..so I said .. then I am going to expect either my kidneys or my heart will fail.." YES was his response.. and then the DR came in but he was preoccupied with getting at tribal contract he had a meeting with in 15 min..so he'd asked me for a scripture for him the last year and I had one and he just t was "Wow Holy Ghost.. and all of that.. so..I am a believer.. but where is MY MIRACLE??? He got the contract.. and now they tell me he's very busy and I can't see him until IDK when..and I am 71 and have spent the better part of 3 years in bed.. with a few good days.. so does anyone know if the hydrochloraquine pills will slow the progression of systemic scleroderma manifesting in the digestive system??? I am really quite frustrated at this point.. quality of life is about zero (please excuse the religious vernacular if it offends you..it is part of the story ) ..He's not going to cost me my faith in God .just sort of losing trust in him.. what does anyone thing about this?..I'm not sure what to do.. except try to get back in and see him.. and pray!! thank you all for reading this and this wonderful forum!!
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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
3 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
2 ReactionsThank 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.
-
Like -
Helpful -
Hug
2 ReactionsI 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.
Have you started Cellcept? I'm still on LDN, but had a few breaks due to surgery. My hands have soft skin and the part of the finger closest to my hand. My finger tips are still stiff, especially on my right hand ( my injured arm). What about LDN is scary to you?
-
Like -
Helpful -
Hug
2 ReactionsI have chosen not to start Cellcept. I have been following an AIP diet for almost 3 months that is supposed to help with inflammation and gut repair. My hands are still quite swollen, but I definitely feel better. I suppose I am hesitant to be on any sort of medication. I tend to be one of the people who are highly affected by medications and end up with all of the bad side effects. I suppose if I am able to find a provider that knows what they are doing I should at least try it.
I appreciate you responding.
-
Like -
Helpful -
Hug
1 ReactionI have been seeing a rheumatologist for 3 years now..(I live very rural and not many in this area)..the 1st time I saw him he was on a TV (he also works at a VA in NY..I live in OK). Prior to my visit he required 18 vials of blood for blood work.. I analyzed my results and found a SCL 70 1.0 Pos /Homogeneous titer.. I asked him alot of questions.. he asked me "why are you asking me questions my medical students should be asking? (Well because I didn't when my husband had cancer..and he died) so then he started to cry and proclaimed it a miracle and said I don't have it.. and we Praised the Lord! (And I threw out the hydroxychloroquine pills he had sent ..prior to my visit ..and after having my eyes cleared for the meds..and a $600 new pair of glasses). 2nd year same thing only SCL70 was now 3.0 pos.. this time I saw him in person.same thing.. "miracle you don't have it".. THIS year.. after so many horrible years of being so ill and developing pyloric stenosis..which he said "gastro" had to deal with. he had an assistant..who didn't order the usual 18 viles of blood work and I had to request the SCL70 .. which was now down to 2.0 pos.. this young man told me "we can't rule it out"..and since my significant other was with me.. (he lost his wife and a daughter..and he's had enough loss in his life..didn't want to frighten him) I replied.. "wouldn't I be losing weight? (I had been down to 98 and 104 for along time.. now up to 157 ..too fat!) and he said "not necessarily" ..so I said .. then I am going to expect either my kidneys or my heart will fail.." YES was his response.. and then the DR came in but he was preoccupied with getting at tribal contract he had a meeting with in 15 min..so he'd asked me for a scripture for him the last year and I had one and he just t was "Wow Holy Ghost.. and all of that.. so..I am a believer.. but where is MY MIRACLE??? He got the contract.. and now they tell me he's very busy and I can't see him until IDK when..and I am 71 and have spent the better part of 3 years in bed.. with a few good days.. so does anyone know if the hydrochloraquine pills will slow the progression of systemic scleroderma manifesting in the digestive system??? I am really quite frustrated at this point.. quality of life is about zero (please excuse the religious vernacular if it offends you..it is part of the story ) ..He's not going to cost me my faith in God .just sort of losing trust in him.. what does anyone thing about this?..I'm not sure what to do.. except try to get back in and see him.. and pray!! thank you all for reading this and this wonderful forum!!
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3 Reactions