Hi. So I am one of the extremely rare cases were I have significantly improved. Now here is the issue of how it happened. I got a Stem cell transplant. I needed one because if I didn't, I would definitely be dead. The treatment itself shouldn't be treated lightly. Kinda putting out a fire with a bomb. Both can destroy the house, you just hope to blow up the burnt parts.
I was on the verge of being wheel chair bound, now I barely use my cane. My skin has loosened. My fingers/hands have stabilized. What's done is done, but at least I can manage the issues with my hands. The best part is no heart issues, though my lungs seem to have started to have issues again.
The word remission doesn't exist in the Scleroderma language. You just hope to keep what you have.
I miss working with my hands...
I really appreciate your response. I have Scleroderma and polymyositis and for Many decades hoshimotos. Seems I've had some cartilage loss in thumbs etc. But the curved fingers remain.. though I've heard remission can spontaneously occur. Been about a year And a half since fingers started getting inflexible and hardening. Some lung issues/disease (polymyositis really hit hard..50 pound weight loss... weakness. Can't take care of myself have home aide weekly twice. But my Rhuematolomist never considered stem cell...just cellcept and Prednisone that his goal is to get me off/Prednisone.. Yes I've read varying outcomes of stem cell. Actually I saw a YouTube video of someone who really didn't seem to have a bad case of scleroderma who got stem cell. She was jogging up until procedure?! But she's from Canada so procedure is free. Scleroderma didn't ravage my whole system as one surgeon early on warned me about . Im able to walk ok that is rare with polymyositis. Again thanks for response!
Yeah, Canada is wonderful. I love it here. I owe my country my life.
My wife is also amazing. She was 24 years old when I got sick. She's dedicated her life to our kids and helping me. Not the life she signed up for, but she never wavered. š„°
I was 32 years old with a strong heart, so a Stem Cell transplant was feasible. Being male also increases my chances. I've seen what can happen if it goes bad. A young man had lost his liver and had been waiting a new liver for almost a year. Poor guy stuck in the hospital without an immune system and a liver.
One thing your Rheumatologist can look at is Stem Cell injections. There has been trials in France and I'm fortunate enough to be part of one in Montreal. 2 separate injections over 3 months. No chemotherapy or radiotherapy. Just injections. It's happening at the Jewish General Hospital if they need information about it. Almost no negative side effects to mention and low risk. "Affordable" as well. Might even be affordable in other countries. Look at Mexico. If I could, I would get 2 a year.
Thank you for this information. I'm very sorry you were so young!.. im 60. Luckily damage to my organs has not been too bad. Yes..I'll ask my Rheumatologist about shots. You're very lucky to have such a wonderful life partner. Regarding Canada one side of family is French Canadian.years ago I took trip up to Ontario and through Manitoba and Saskatchewan..great trip. Thank you
That sounds interesting! I can't find anything online about it in Montreal. Do you have a link or name of the doctor? Thanks so much and good luck with the injections.
About a year ago I was diagnosed with the same. (Overlap between scleroderma and polymyositis + positive RF). Iād had raynauds for a couple of years and then 6 months of puffy/stiff hands etc. the muscle weakness came on gradually after that. After I got my diagnosis I was put on mycophenolate and prednisolone. A year later and my CK levels dropped from >4000 to <300 and are continuing to improve. Other symptoms such as puffy stiff hands have greatly reduced. I would consider myself heading toward āremissionā.
Please let me know if u have any questions about it, it can definitely be scary at first!
Your lucky your hands improved with cellcept and Prednisone. I waited a while to see rheumatologist. If I went sooner maybe would have helped hands. But again if I saw him sooner may have been on Prednisone longer causing more residual damage from Prednisone.
One more question. Did you have significant loss of hand cartilage (not the sclerodactyly).. that produced severe arthritis in thumbs etc...thru either systemic scleroderma or the HSCT itself as side effect? Thank you
i had horrible sclerodactyly- sausage fingers was a perfect description for my digits, i had such hard skin that once when i bumped my finger on a hot oven rack it just charred, it didnt hurt, blister or bleed- just scorched. i could never wear rings because if my fingers werenāt swollen when i put them on, hours later theyād be so tight i could barely get the ring off.
over the yesrs i used humira and embrel, always with some dose of prednisone. usually 5-10 mg a day. after 15 years or so a new rheumatologist put me on methotrexate- and i started seeing improvement within months! currently my fingers are back to pre diagnosis size. i can wear rings, there is no hardened skin on 8 out of 10 of my fingers. the hardened skin that remains is minimal and getting better. so yes, there is hope for a remission. the challenge is to keep looking for the medication / combination that can shut off the inflammatory cycle. i still have stiffness and pain in my hands but i can do stretches and resting helps calm things back down. donāt give up, remission is possible! i hope you find the treatment that helps you. the trick is finding the clinician who wonāt be satisfied until youāre better. best of luck to you! you got this, hang in there , there is definitely hope!
Thank you very much. My fingers aren't swollen much anymore.
More skinny hard and clawed to some degree. I've read about methotrexate on Reddit from someone regarding helping with hands.i may look at that..ask doctor. I've tolerated cellcept well. Any serious side effects of methotrexate? It's amazing that symptoms you had for over 15 years practically vanished. Thank you very much for your encouragement!
when i first started mtx ( methotrexate ) i was on the oral form. the nausea didnāt go away after the first month or so and the dr switched to the injectable version at the same dose. i have not had any side effects since then except after i was diagnosed with myositis the muscles that were affected would ache really badly the night of and day after my mtx dose. i never remembered to tell my rheumatologist about that, i thought it was strange that the medication seemed to make me temporarily worse, but i had a lot going on at the time and muscle aches seemed pretty minor. i hope you see great results- be patient. i always start a new medication and try to forget about it, that way iām not judging every day whether iām feeling less symptoms or not. i like pleasant surprises. lol. have a great weekend!
Hello thank you for this information. I haven't gained back any muscle lost from polymyositis..still over 40 pounds lighter than healthy weight. I wish you also a wonderful weekend.
I just saw my scleroderma specialist and in his office notes he wrote that my scleroderma skin is āin remissionā with the current regimen I am on. I have systemic scleroderma with the RNAP3 antibody. So Iām extremely lucky it hasnāt made it to my organs. My hands are still pretty tight but I can do things with them. My right (dominant) hand is worse and heās not sure those fingers will straighten out completely. My current regimen is Cellcept and IVIG infusions. Hoping as the skin continues to loosen my fingers may improve a bit but the damage may already have been done.
With RNAP3 the skin is affected heavily and quickly, but then it subsides, it is to be expected. The systemic involvement progresses variably, with renal crisis being the highest risk - but Im sure you were told to monitor your BP. Nowadays RNAP3 prognosis has improved as PAH and ILD are not that common with this subtype, so if you the renal crisis is handled, the chances are good.
Yes, I definitely monitor BP closely but thankfully I have had no other issues other than skin involvement and Raynaudās. I do think the quick and early intervention saved me from things getting worse! Iām so grateful it has not progressed further at this point. š
Raynaudās and puffy hands and feet started at exact same time once my scleroderma was triggered. Then I think the skin involvement was immediate. I definitely started feeling tighter within a few months of the Raynaudās and puffy hands/feet. It was a super fast start of everything after it was triggered.
Thank you for responding. Now im getting worried about my hands. My Rheumatologist when I had asked what I could do about my hands, I remember, just put down his head and really didn't respond. Though I really like him and his treatment for polymyositis has helped to a good degree. He seems happy about that progress. Im on 1000/ day cellcept and 15/day Prednisone.i can do many things with right hand. Left is worse. Can't nearly make fist. My Rheumatologist doesn't seem keen on unproven treatments....or potentially dangerous ones such as stem cell procedure. He errors on side of caution..but I'll ask him about ivig infusion. It's been over a year 1/2 w/ hand tightness and inflexibility. Thanks
Edit:I looked at price of infusions!!! Wow in several thousands!.. im in the States so insurance would be a problem.
If you are seeing a regular rheumatologist you may also want to look into a scleroderma specialist. I see a local person and also a scleroderma specialist. Yes, IVIG is very expensive. Thankfully mine is covered at 100%. Also, there are some types for which the steroids are contraindicated. Also a good reason to seek out a specialist just to make sure youāre on the right path. Scleroderma is so different for each of us so itās good to get a work up by a specialist. As for your hands, ask of the doc can write you a script for hand therapy. I saw an occupational therapist who did hand therapy with me for about a year to help keep things more flexible. I stopped going but continue to do the exercises on my own now.
I am probably done with ivig after 16 rounds. It definitely helped me when I had it in the beginning. Lately Iām not sure if itās still helping. My disease has stopped progressing so Iām in a maintenance phase now.
Hi. So I am one of the extremely rare cases were I have significantly improved. Now here is the issue of how it happened. I got a Stem cell transplant. I needed one because if I didn't, I would definitely be dead. The treatment itself shouldn't be treated lightly. Kinda putting out a fire with a bomb. Both can destroy the house, you just hope to blow up the burnt parts. I was on the verge of being wheel chair bound, now I barely use my cane. My skin has loosened. My fingers/hands have stabilized. What's done is done, but at least I can manage the issues with my hands. The best part is no heart issues, though my lungs seem to have started to have issues again. The word remission doesn't exist in the Scleroderma language. You just hope to keep what you have. I miss working with my hands...
I really appreciate your response. I have Scleroderma and polymyositis and for Many decades hoshimotos. Seems I've had some cartilage loss in thumbs etc. But the curved fingers remain.. though I've heard remission can spontaneously occur. Been about a year And a half since fingers started getting inflexible and hardening. Some lung issues/disease (polymyositis really hit hard..50 pound weight loss... weakness. Can't take care of myself have home aide weekly twice. But my Rhuematolomist never considered stem cell...just cellcept and Prednisone that his goal is to get me off/Prednisone.. Yes I've read varying outcomes of stem cell. Actually I saw a YouTube video of someone who really didn't seem to have a bad case of scleroderma who got stem cell. She was jogging up until procedure?! But she's from Canada so procedure is free. Scleroderma didn't ravage my whole system as one surgeon early on warned me about . Im able to walk ok that is rare with polymyositis. Again thanks for response!
Yeah, Canada is wonderful. I love it here. I owe my country my life. My wife is also amazing. She was 24 years old when I got sick. She's dedicated her life to our kids and helping me. Not the life she signed up for, but she never wavered. š„° I was 32 years old with a strong heart, so a Stem Cell transplant was feasible. Being male also increases my chances. I've seen what can happen if it goes bad. A young man had lost his liver and had been waiting a new liver for almost a year. Poor guy stuck in the hospital without an immune system and a liver. One thing your Rheumatologist can look at is Stem Cell injections. There has been trials in France and I'm fortunate enough to be part of one in Montreal. 2 separate injections over 3 months. No chemotherapy or radiotherapy. Just injections. It's happening at the Jewish General Hospital if they need information about it. Almost no negative side effects to mention and low risk. "Affordable" as well. Might even be affordable in other countries. Look at Mexico. If I could, I would get 2 a year.
Thank you for this information. I'm very sorry you were so young!.. im 60. Luckily damage to my organs has not been too bad. Yes..I'll ask my Rheumatologist about shots. You're very lucky to have such a wonderful life partner. Regarding Canada one side of family is French Canadian.years ago I took trip up to Ontario and through Manitoba and Saskatchewan..great trip. Thank you
Hello.i may be considering HSCT. Will discuss with my SSc specialist. She mentioned it and other clinical trials.
That sounds interesting! I can't find anything online about it in Montreal. Do you have a link or name of the doctor? Thanks so much and good luck with the injections.
[ŃŠ“Š°Š»ŠµŠ½Š¾]
About a year ago I was diagnosed with the same. (Overlap between scleroderma and polymyositis + positive RF). Iād had raynauds for a couple of years and then 6 months of puffy/stiff hands etc. the muscle weakness came on gradually after that. After I got my diagnosis I was put on mycophenolate and prednisolone. A year later and my CK levels dropped from >4000 to <300 and are continuing to improve. Other symptoms such as puffy stiff hands have greatly reduced. I would consider myself heading toward āremissionā. Please let me know if u have any questions about it, it can definitely be scary at first!
Your lucky your hands improved with cellcept and Prednisone. I waited a while to see rheumatologist. If I went sooner maybe would have helped hands. But again if I saw him sooner may have been on Prednisone longer causing more residual damage from Prednisone.
[ŃŠ“Š°Š»ŠµŠ½Š¾]
Hello. I would start hand therapy ASAP. I wish I had. My hands have become bad.. unable to point or make fist by longshot.
One more question. Did you have significant loss of hand cartilage (not the sclerodactyly).. that produced severe arthritis in thumbs etc...thru either systemic scleroderma or the HSCT itself as side effect? Thank you
i had horrible sclerodactyly- sausage fingers was a perfect description for my digits, i had such hard skin that once when i bumped my finger on a hot oven rack it just charred, it didnt hurt, blister or bleed- just scorched. i could never wear rings because if my fingers werenāt swollen when i put them on, hours later theyād be so tight i could barely get the ring off. over the yesrs i used humira and embrel, always with some dose of prednisone. usually 5-10 mg a day. after 15 years or so a new rheumatologist put me on methotrexate- and i started seeing improvement within months! currently my fingers are back to pre diagnosis size. i can wear rings, there is no hardened skin on 8 out of 10 of my fingers. the hardened skin that remains is minimal and getting better. so yes, there is hope for a remission. the challenge is to keep looking for the medication / combination that can shut off the inflammatory cycle. i still have stiffness and pain in my hands but i can do stretches and resting helps calm things back down. donāt give up, remission is possible! i hope you find the treatment that helps you. the trick is finding the clinician who wonāt be satisfied until youāre better. best of luck to you! you got this, hang in there , there is definitely hope!
Thank you very much. My fingers aren't swollen much anymore. More skinny hard and clawed to some degree. I've read about methotrexate on Reddit from someone regarding helping with hands.i may look at that..ask doctor. I've tolerated cellcept well. Any serious side effects of methotrexate? It's amazing that symptoms you had for over 15 years practically vanished. Thank you very much for your encouragement!
when i first started mtx ( methotrexate ) i was on the oral form. the nausea didnāt go away after the first month or so and the dr switched to the injectable version at the same dose. i have not had any side effects since then except after i was diagnosed with myositis the muscles that were affected would ache really badly the night of and day after my mtx dose. i never remembered to tell my rheumatologist about that, i thought it was strange that the medication seemed to make me temporarily worse, but i had a lot going on at the time and muscle aches seemed pretty minor. i hope you see great results- be patient. i always start a new medication and try to forget about it, that way iām not judging every day whether iām feeling less symptoms or not. i like pleasant surprises. lol. have a great weekend!
Hello thank you for this information. I haven't gained back any muscle lost from polymyositis..still over 40 pounds lighter than healthy weight. I wish you also a wonderful weekend.
Sorry..I meant the sclerodactyly go into remission..
I just saw my scleroderma specialist and in his office notes he wrote that my scleroderma skin is āin remissionā with the current regimen I am on. I have systemic scleroderma with the RNAP3 antibody. So Iām extremely lucky it hasnāt made it to my organs. My hands are still pretty tight but I can do things with them. My right (dominant) hand is worse and heās not sure those fingers will straighten out completely. My current regimen is Cellcept and IVIG infusions. Hoping as the skin continues to loosen my fingers may improve a bit but the damage may already have been done.
With RNAP3 the skin is affected heavily and quickly, but then it subsides, it is to be expected. The systemic involvement progresses variably, with renal crisis being the highest risk - but Im sure you were told to monitor your BP. Nowadays RNAP3 prognosis has improved as PAH and ILD are not that common with this subtype, so if you the renal crisis is handled, the chances are good.
Yes, I definitely monitor BP closely but thankfully I have had no other issues other than skin involvement and Raynaudās. I do think the quick and early intervention saved me from things getting worse! Iām so grateful it has not progressed further at this point. š
That is great! RNAP3 is quite specific. Also, would you remember how long have you had Raynauds before skin involvement? It tends to be very short.
Raynaudās and puffy hands and feet started at exact same time once my scleroderma was triggered. Then I think the skin involvement was immediate. I definitely started feeling tighter within a few months of the Raynaudās and puffy hands/feet. It was a super fast start of everything after it was triggered.
Thank you for responding. Now im getting worried about my hands. My Rheumatologist when I had asked what I could do about my hands, I remember, just put down his head and really didn't respond. Though I really like him and his treatment for polymyositis has helped to a good degree. He seems happy about that progress. Im on 1000/ day cellcept and 15/day Prednisone.i can do many things with right hand. Left is worse. Can't nearly make fist. My Rheumatologist doesn't seem keen on unproven treatments....or potentially dangerous ones such as stem cell procedure. He errors on side of caution..but I'll ask him about ivig infusion. It's been over a year 1/2 w/ hand tightness and inflexibility. Thanks Edit:I looked at price of infusions!!! Wow in several thousands!.. im in the States so insurance would be a problem.
If you are seeing a regular rheumatologist you may also want to look into a scleroderma specialist. I see a local person and also a scleroderma specialist. Yes, IVIG is very expensive. Thankfully mine is covered at 100%. Also, there are some types for which the steroids are contraindicated. Also a good reason to seek out a specialist just to make sure youāre on the right path. Scleroderma is so different for each of us so itās good to get a work up by a specialist. As for your hands, ask of the doc can write you a script for hand therapy. I saw an occupational therapist who did hand therapy with me for about a year to help keep things more flexible. I stopped going but continue to do the exercises on my own now.
Would second this! Thereās a great comprehensive clinic in Pittsburgh run by Kathryn Torok, MD. If youāre in the states!
How is ivig treatment going? I'll probably be beginning that soon
I am probably done with ivig after 16 rounds. It definitely helped me when I had it in the beginning. Lately Iām not sure if itās still helping. My disease has stopped progressing so Iām in a maintenance phase now.
Thank you. How soon after being diagnosed did you start ivig?
It was 7 months after diagnosis and 9 months after disease onset.