Has anyone else's Dr talked to them about remission. I have the echo voice of my rheumatologist saying 'we can put this to sleep'. What does this mean?
It's seems a way more complicated word when it comes to Scleroderma. But they've said they can achieve it...remission
xxx
Think they probably meant they could give you drugs that can modify will sometimes put us into drug induced remission by halting the disease progression. It’s not curable yet but they can slow it down if you can tolerate the treatments and do well on these.
I get confused with the literature when it states nothing can stop the overproduction of collagen? Or spew halting the immune process then effect the production of collagen? I hope this makes sense x
Sounds like literature maybe making you overly anxious or giving you unrealistic expectations perhaps? Mind you I did have inflammatory arthritis which remitted after a few years on methotrexate and Hydroxichloraquine so I guess anything is possible. Certainly I have found that things keep changing and morphing but not always as positively/ in a good way unfortunately. I take a pragmatic view now.
It's more I don't understand how remission can happen if they can't stop the production of collagen? Or is it that the drugs stop/slow the immune system in its tracks which results in halting the production of collagen. I don't have high expectations really, Mine are quite low and I guess that's why I'm trying to have understanding. Im only 37 and have two very young children and the disease has caused ILD. I guess always looking for hope x
I understand. I would like to say there’s always hope because as our hormones change and wax and wain a lot seems to affect our immune responses. I now have collagen that leaks into my skin forming boil like extrusions but I don’t have the skin tightening - skin always been hypermobile so the opposite collagen vascular process to scleroderma even though I’m antibody positive. No idea which one will win - hardening and tightening or a hereditary lifetime of stretchy and loose. Had autoimmune since infancy and not dead yet or near it so there is hope and things change 😊x
When I was first diagnosed & my Consultant discussed this lovely disease she did mention that on a very, very rare occasion it can just disappear! What a lovely thought! I hope you're one of the very very lucky ones.I agree with the other posts in that medication can stabilise the disease & prevent it from continuing on its destructive path.
I wish you all the luck!!
Arts
Please remember I was only 32 with three girls under 3, I too had ILD.
I had aggressive treatment, oral methotrexate , then two six month courses of cyclophosphamide by infusion. This really slowed the lung disease and I suppose a sort of remission. It did however stop my periods and we couldn’t have any more children but we could concentrate on the ones we had.
Twenty years later after taking a miracle drug for me that had been new to the market, Mycophenolate, my gas exchange and capacity remain fairly stable.
My Scleroderma is well controlled by a cocktail of numerous drugs and long term steroids. However, I have a lovely life and family and remain fairly active for my age. I do have rheumatoid arthritis but so did my grandmother and today’s drugs help significantly.
Advances in medicine continue daily and I’ve certainly benefited. The disease cannot currently be cured but they can control the symptoms.
Please remain positive and optimistic.
Enjoy your young family and look forward to the future. Plan small things to look forward too.
I remember well the bleakness of my diagnosis and the tears shed by my husband and I.
Love and best wishes for you x
Thanks so much! You really help me at my lows always. We've just done face masks and cucumbers this morning, enjoying all the moments xxx
Yes, there is always hope. I am now in remission, only a bit of reflux and of course the raynauds, but otherwise my life is back to normal. Keep positive, keep exercising, keep enjoying the little things in life.
That sounds lovely and a good thing to do when the weather is so hot.
Enjoy the good times and don’t sweat the small stuff.
Sorry I ask you your name.
Best wishes Helen x
It's Aarti xxx
When I was first diagnosed three years ago my rheumatologist said that hope fully we had caught it early to minimise the damage and I have been stable for a while. It’s my lupus that flares every time I have the Covid jab. I am on mycophenolate, hydroxychloquine and tapering my steroids - now on 4mgs.
My son is in remission from mixed connective tissue disease (scleroderma, lupus, rheumatoid). He is 18. To me remission is symptom free and not needing medication. Is this what your doctors mean when they talk about remission or do they mean symptom control by using medications?? We used a more holistic approach to achieve remission - diet and lifestyle. We've never looked back and he’s doing really well. X
I think remission is classed as symptoms managed (with or without medication). So for example my friend with colitis was classed as in remission as she'd been symptom free with medication for 1 year. But with scleroderma I'm not sure.
What did you change about diet. I'm vegetarian (since 8) and now more or less gluten free.
Thanks and I'm so happy for your son and for you as a mum as I couldn't even begin to imagine your journey x
We put my son on an autoimmune protocol diet when he was 12. He was diagnosed age 10. It has been very tough. Watching him suffer was horrible. Once we realised how gut health and disorders of the immune system are so connected, everything seemed to make sense and all of his symptoms were obviously linked. He was on 5 different medications and after a year on the diet he slowly came off all of them. It was amazing to see his health improve so much. His diet is not as strict as it was - we have reintroduced quite a few foods. He is gluten free, dairy free, and avoids nightshades, corn, many grains, certain nuts. We eat mostly organic food, loads of vegetables, not much sugar and no processed foods.
Keep face masks petition 
Intestinal bacterial overgrowth 
Scleroderma affecting the colon? Does anyone suffer with colon spasm due to this?
Tips for starting mycophenolate 
