I have dermatomyositis diagnosed in November and started on meds in December. High doses of prednisolone at first but have now reduced to 10mg. I’m also on 200mg hydroxychloraquine daily and 25mg methotrexate weekly.
So far all well on the disease front but I am gaining weight at a rate of knots!! I put on roughly a pound every day and have gained over a stone since March. I know it’s just aesthetics and I don’t want to return to previous disease levels which were horrific but I was wondering how everyone else copes with this?
I’ve tried slimming world, noom, and calorie counting-nothing is having an impact.
Does anyone have any helpful suggestions. It’s really upsetting as I don’t feel like myself and I’m not sure where this all stops!
Any help would be gratefully received.
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Parisian13
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Hi, I’m not going to be much help I’m afraid. I started on 60mg per day of Predisnolone in Feb and now down to 15 as well as weekly methotrexate. I gained a stone and a half quite quickly but does now seemed to have levelled out. Diet and exercise will help but reverse the weight gain possibly until you come off the steroids. I agree the weight gain is not good but the puffy eyes and acne bothers me more . Good luck
Hi Gus, thank you so much for taking the time to respond. I really do massively appreciate that-even though the news seems to not be very hopeful. I agree on the puffy eye and acne front-that is very annoying too. Between the condition and the cure it does seem to be the gift that goes on giving!
I recently tried sticking to 1200 calories a day-this didn’t seem to make any difference. In fact I think I’ve developed a new skill of managing to channel calories through water!! 😂
I will take some hope in the fact that you seem to have levelled out. Hopefully I will stop gaining weight soon.
Fingers crossed we are both on the road to recovery.
Is this real weight gain or just water retention - both can be side-effects of the steroids you are on. The puffy face suggests water retention to me, as it is one of the common water retention signs, swollen ankles is also one. Medically there are solutions to this (more medication!).
I, like you, am on high dose steroids (60mg per day) and methotrexate (20mg per week) currently, for anti-SRP NAM, similar to dermatomyositis but an auto-immune myositis which mainly 'destroys' the muscle, without visible skin effects. So far have kept my weight gain under control (about 5-6 pound since starting treatment in early-Feb which is within my 'normal' fluctuation range).
How am I doing this?
Watching the calories, aiming for a high protein diet with low glycemic carbs (white sweet potatoes for example instead of potatoes, brown/red/wild long grain rice instead of white rice), no simple sugars (if any then in fresh fruit etc.), whole grains (ancient ones) with little gluten containing flour, meatless meal at least once/twice per week (beans, pulses or plant protein) & lots of exercise (60 mins. exercise and 30-45 mins PT per day). We also only ever cook in olive or other mono-unsaturated fat and use little butter/marg.
The exercise is tough to fit in around full-time work and the impact of muscle weakness, but I think it is paying off. I know I was advised to up my exercise to help counteract this side effect, in addition to eating healthy
Thank you so much for this, I’m going to speak to my specialist about the water retention. I think you might be quite right about that. I’ve been really strict with the calorie counting over the last few weeks. I’ve just started this week to see a very slight positive impact in the last two days. I have to admit I was getting really despondent as it felt like I was making big changes but seeing no impact which just made me feel like I had no capacity to effect change!
I’m so impressed at your exercise regime. I do the app based 7 minute exercise routines which I’ve managed to do daily throughout my 12 month journey (albeit an adapted version when I have been at most immobile) Some days in December and January I was literally just flapping my arms around!! But now as I’ve got stronger and more mobile I’m more able to do a more robust regime. I am nowhere near an hour though - I take my hat off to you.
Thank you so much for the dietary advice, it very much mirrors my own but I think I still need to make some targeted changes.
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How do you get a firm Mysiotis diagnosis? What scans will show affects on muscles? 
Could I have dermatomyositis?
DM and pain
