Prednisolone and weight

[RachmaninovFan]

My husband has been taking steroids for his encephalitis brought on by Hashimoto's Encephalopathy since March 2024. The dose is tapering down, but his weight loss doesn't seem to be tapering. He was a skinny thing all his life until now, so putting on 10kg in 4 months has been quite a shock to him.Is it likely that, as he takes fewer steroids (and maybe even one day, zero steroids) it will get better?

[kitnkaboodle]

Weight gain is a very common side effect of steroids. I’m not sure I understand your question?

[RachmaninovFan in reply to kitnkaboodle]

Will it go away, if he ever stops taking them?

[kitnkaboodle in reply to RachmaninovFan]

Yes, weight stabilizes after E and treatment. Eventually. It will take a while. I never had steroids, but my brain is still very confused about metabolism and regulation. Lots of ups and downs in weight, despite routine exercise and healthy diet.

[RachmaninovFan in reply to kitnkaboodle]

Thanks, that's very helpful to know. With all the memory and cognitive and personality shifts due to the E, having your body look totally different as well is a massive mental health hit -- and being powerless to do anything about any of it. It's hard to know whether to hold out to hope about whether he might lose the weight at some point in the medium-term future, look in the mirror and feel he is the person he is expecting to see.

[kitnkaboodle in reply to RachmaninovFan]

“Powerless” is the right word for sure. But it is still very early for your husband. I would hope for stabilization after steroid tapering. It will take years before a “new normal” is established. Most E patients want to get back to exactly how things were before; that doesn’t happen. E is too big and too bad of a disease to leave us exactly as we were. But at least some recovery is possible—it will take months and years to see the new baseline.

[Cf1947]

Based on my husband's experience, he should see a return to normality as he continues to taper the steroids.

[George304]

Yes, I'm sure it'll recover when he eventually stops. I lost 10kg with encephalitis, then regained it and put on a further 15kg which persisted until I stopped taking prednisolone which gives you excess appetite. Also factors are stopping drugs that make you drowsy and overcoming fatigue. I'm now back to weight beforehand without dieting or making a special effort (albeit now with a few larger and spare clothes).

[HSE_Survivor]

I had a big ‘moon face’ on the photos taken of me when I first regained consciousness due to the steroids I was on. When I eventually came completely off the steroids, my weight went back to normal . I think the weight is probably fluid retention. In my case, I was also completely inactive for the first few months, too, which probably slowed my metabolism.

[The_Bass]

Hi RachmaninovFan – I took prednisolone for a year and a big dose initially that was slowly reduced. The possible side effects are a very long read and I can relate to many of them – I particularly remember my hair falling out in the shower and my face shape grew rounder before returning as my dose reduced. I didn’t find that I gained weight – although may have looked like it – but weight has been a bit up and down on my road to recovery, though not massively. Hope this helps; wishing you all the best.

[RachmaninovFan in reply to The_Bass]

Thank you for sharing your experience 👍 gradually lowering the dose is... definitely gradual.