Are there many of you on regular steroid tablets ,I'm trying to hold off

[Deby177]

I'm trying to hold off but not sure suffer severe raynauds, mixed connective tissue disease, ibs etc. Fatigue in evening is big issue any suggestions, scared weight gain etc

[OldTed60]

could you try an immunesuppressant such as Methotrexate or Mycophenolate perhaps as an alternative to steroids?

[Deby177 in reply to OldTed60]

Never thought of that thanks

[trunchalobesity in reply to Deby177]

immune suppressants are usually in tandem with steroids for scleroderma but please ask your specialist x

[trunchalobesity]

I’ve been on steroids for 22 years.

I have scleroderma and associated lung disease.

If you have been advised by your rheumatologist or specialist to go on steroids please talk to them about any reservations you have, not anyone else. They know your individual health concerns and about any damage to your internal organs.

Scleroderma untreated can be a life limiting disease but with modern medicine and advances in research it is perfectly possible to treat the symptoms and live a relatively normal and full life.

Steroids do not make you fat, they make you hungry and thirsty that can make you put on weight, however with awareness and self control any weight is perfectly manageable. I’m 5”7 and maintain 10 stone.

In addition your ins symptom sound like SIBO , small intestine bacterial overgrowth, common in scleroderma so it may be worth asking your rheumatologist for a specialist gastroenterologist referral.

Best wishes

[Deby177 in reply to trunchalobesity]

Yes thought about SIBO must remember bring that up. Thank you so much for advice

[SiennaBigted in reply to trunchalobesity]

Hi. I have Mixed Connective Tissue Disease with interstitial lung disease. Also have Raynaulds too obviously! I take hydroxychloroquine, steroids and mycophenolate. Plus I have infusions of chemo so suppress my immune system.

I was wondering if you struggle with the symptoms of the lung disease and what your long term diagnosis has been?

[Deby177 in reply to SiennaBigted]

Mixed connective tissue disease, raynauds, IBS and on going issues with pain lower left side same spot all time, lasts few day but returns within a week, waiting on CT scan raynauds given up on all medication tried it all flolan and iloprost infusion no effects. Lot fatigue digestive issues, tight sore around right side but old injury from broken 3 ribs never healed properly 😢. Long problem

[johncot]

I've been on steroids and mycophenolate for 3 & a half years. I started on 25mg/day but this has been gradually reduced to 5mg/day. So far I've had no ill-effects from the steroids.