weight gain after stopping prednisone?

[mppk]

I’m a 68 yo man diagnosed with PMR late 2021. Started on 15 mg prednisone but had to come off quickly because the mood swings and rage were intolerable. Did 5 monthly Actemra infusions but they didn’t make any difference. Went back on prednisone September 2022, 15 mg for a couple of months. Worst symptoms of shoulder pain were mollified and my rheumy had me taper 1mg/week. Other than the agitation and mood swings I didn’t have other typical prednisone side effects. I actually lost a couple of pounds through the treatment. I’ve been off prednisone for two weeks. My pain level fluctuates but is generally tolerable, not nearly as bad as at the height of the disease a year ago. During the taper, and after, I’ve dipped into severe depression and crying jags. Also, weirdly, although my diet hasn’t changed I’m gaining weight. I’m keen to stay off prednisone as the emotional roller coaster makes day to day life difficult. How long will these symptoms last? Has anyone heard of weight gain after prednisone?

[DorsetLady PMRGCAuk volunteer]

I would say your adrenals stuttering is partly to blame for your depression now -even if the Pred was the culprit previously.

Have to say weight gain is unusual after finishing Pred - and the opposite usually occurs if your adrenals are floundering -so that does need following up.

This link gives information on what happens to your adrenals when you are on Pred -and comes from The FAQs section -

healthunlocked.com/pmrgcauk...

I think they need testing (as described in link) and you probably need to see an endocrinologist…

[mppk in reply to DorsetLady]

Thank you for the adrenals primer. I will ask my rheumy for the cortisol test.

[PMRpro Ambassador]

If Actemra didn't help at all I think it is fair to suspect that, whatever it is, is very probably NOT the PMR we talk about here since it is mostly mediated by the IL-6 cytokine and would at least improve with Actemra even if it didn't go entirely (it doesn't always and nor does GCA), PMR isn't really the disease, it is the name given to a set of symptoms and it has several potential underlying causes. Did your doctor consider that?

[Seacat30]

I lost weight with PMR and when first on prednisolone. I had very little real appetite while taking it and didn't get fat. Now I am off steroids I am back to my old foodaholic self and can gain weight again. Oh dear!

[Creas]

I have just stopped taking Pred, today being my 5th day without, and I've been getting bigger and bloatier by the day - I don't recognise myself today - I look like a balloon! I didn't put on any weight when I was taking Pred.

[PMRpro Ambassador in reply to Creas]

Other than the author, DL and me, I doubt anyone will see this old thread. If you are hoping for others' experiences, repost your own thread.

To gain so quickly is probably fluid retention but SnazzyD found that after pred she had to continue low carb to avoid weight gain.

[Creas in reply to PMRpro]

Thank you, that's very interesting. I generally fare best on a low carb diet (specially grain seems to bloat me out). I see some people (online generally) linking PMR to coeliac diseases, and some find paleo diet helpful, which is also interesting in this context. And the fact that some find fasting stops the PMR also hints at food allergy/intolerance. I must try harder with my diet. But it's been difficult over this particularly unpleasant winter - just too much comfort eating!

I'm sorry I hadn't noticed the post I replied to was old - don't know how I stumbled onto it.

[PMRpro Ambassador in reply to Creas]

Happens a lot, sometimes you even get a notification - one recently was about 8 years old!!! HU has its own rules!!

Know what you mean - I was at my daughter for a couple of months last summer, she is vegan, meals tend to be carbs with a side of carbs! I had lost weight at lower pred but put on about 2kg. Went home meaning to be really good and get it off again - but it was a yucky winter and I was a bit depressed trying to settle to being alone again, all still there! And I have a wedding in 2 weeks ...

[SnazzyD in reply to Creas]

Is this a sudden change immediately since stopping Pred? Is it all over?

As PMRPrp says, I had to continue with a low carb diet after stoppping Pred. Not as extreme but I still didn’t have carbs routinely on my plate.

[Creas in reply to SnazzyD]

No. Not all over. Mostly round middle and upper body. Hate it. Feel like a potato on stilts. Neck and shoulders thickened like a little bull 😂

[Creas in reply to Creas]

Got noticeably worse after stopping though body shape had changed while on pred but then w/o overall weight gain.

[SnazzyD in reply to Creas]

Sounds like the classic areas of fat deposition and your potato on stilts is on the same lines as the apple on cocktail sticks description of the ‘Pred body’. Reading back it seems like you haven’t been on Pred much more than a year. It may be that some Pred effects have been delayed with accumulation or the winter comfort eating added rocket to your metabolism which coincided with the stopping of Pred. The only way is to get those carbs in hand. Sadly, I think most people don’t get the extra just melting away while they read a book when the Pred stops.