Weight Loss on prednisolone taper

[Bringonthemusic]

Hi, I was diagnosed with Polymyalgia in January 2020 and have been on prednisolone, alendronic acid and adcal since then. I am tapering my prednisolone currently taking 6mg a day. I have lost 20lb in weight while reducing the prednisolone has anyone else experienced this? I am also really tired and sleep for almost 12 hours a day. I lost a lot of weight prior to being diagnosed, but gained 28lb when I started taking the pred.

[PMRpro Ambassador]

Superficially, classic signs of adrenal insufficiency, At what point did you start to lose weight and did it coincide with getting well under 10mg/day? Have you been taking weight loss measures other than just getting to a lower dose of pred?

Have you told your GP? Unexplained weight loss and fatigue need some investigation - hence I say superficially adrenal insufficiency but there are other things that should probably be ruled out.

[Bringonthemusic in reply to PMRpro]

Thank you. That's what I was wondering. No weight loss measures at all. I wasn't sure if it was unusual or not as I had not been able to find much about this. Yes, the weight loss started as I reduced to under 10mg a day. My Consultant wants me to drop to 5.5mg and see how I go. He is thinking of a referral to an Endocronologist. I am only tapering by 1/2mg every 6 to 8 weeks.

[PMRpro Ambassador in reply to Bringonthemusic]

There isn't much an endocrinologist can do - especially at this dose since any cortisol testing will be meaningless at above 5mg and probably not much use down to about 3mg. Only there being a low level of pred in the body will encourage the body to produce cortisol itself. If it were decided the adrenal glands were no longer working and producing enough cortisol for you to function then the management is to use pred or hydrocortisone as a replacement therapy - and then the adrenals won't wake up and start to work again either. It is a conundrum.

[Bringonthemusic in reply to PMRpro]

Very useful information, thank you. I will keep going on the reduction and see how I go. I will log the weight loss with my Dr too, but as it started when I got to under 10mg of pred a day I think It may be related.

[PMRpro Ambassador in reply to Bringonthemusic]

Hopefully - but there is a always coincidence and no-one wants nasty surprises.

[DorsetLady PMRGCAuk volunteer]

Agree with PMRpro’s comments -so maybe have a look at this- but you do need to discuss with doctor -

healthunlocked.com/pmrgcauk...

[Bringonthemusic in reply to DorsetLady]

Thank you. I did discuss this with my Consultant. He said to continue with the 1/2mg reduction at a 6 week mark to 5.5mg and see what happens. He may refer to an endocrinologist. The weight loss is slowing, but still dropping but in smaller amounts.

[DorsetLady PMRGCAuk volunteer in reply to Bringonthemusic]

Endo may not do anything until you get lower -but worth getting “in the system” if you can.

Please keep us informed.

[piglette]

Sounds like the dreaded deathly fatigue has taken a hold. It happened to me really badly at 5mg. It is suggested that you just hang on at the same dose until things improve. In my case I was zombie like and found it an effort to lift my hand to scratch my nose. I lost about 23 pounds, but am probably starting to put it on again.

[Bringonthemusic in reply to piglette]

Thank you. It's reassuring to hear you are gaining weight again. I guess its a case of pushing on a bit further as my Consultant suggests. I hope you feel better soon.

[carport]

This time last year it happened to me but partly because I was dropping 1mg every 4 weeks and feeling fatigued and rough. Once changed to dropping 0.5 mg over 5 weeks stopped loosing weight did not start putting on weight for a couple of months when I changed my diet slightly by increasing carbohydrates. Hope life improves soon as it will just have to have patience enjoy music Bringonthemusic

[Karendeena in reply to carport]

I lost weight when tapering too quickly, I felt dreadful too, convinced myself something sinister was going on!

[Bringonthemusic]

Thank you so much for responding. It is reassuring to know it's not just me! I was dropping 1mg a day in May and June last year then switched to 0.5mg as my ESR and CRP were not totally stable and like you I felt rough. My 0.5mg progress has been slow at 6 to 8 weeks. I have decided to change my diet and increasing carbohydrates is an excellent plan. I hope you are through the worse part of the reduction process and are now feeling much better.

[Wales20]

I too lost weight when tapering. My rheumatologist said to increase my food intake as inflammation uses a lot of energy apparently. I have subsequently put back most of the weight, exercising daily to gradually rebuild my muscles.

[Bringonthemusic in reply to Wales20]

Thank you so much for sharing this with me. I think that's the conclusion I am coming to. Add extra food in to try to build back what I am losing. I do walk daily and also do physio. I am feeling more reassured that this is something that does happen.

[Karendeena]

Yes this happened to me, frightened me. I was convinced something sinister was going on as I felt dreadful too with nausea and paranoia. Turns out (following a load of tests and a CT colonoscopy) I was tapering too quickly. My GP had me going down 1mg every 2 weeks until I stopped. The weight dropped off me. I had to go back on 5mg after a flare and my Rheumatologist has said 1mg every 3 months although I go to 2.5mg about 4 weeks before. I am down to 3mg which is where I started to flare before. I am keeping everything crossed this time as I am approaching 2 years with this dreadful condition

[Bringonthemusic in reply to Karendeena]

I do hope you manage to win the battle. I am into year 4 and have never got past the current level of 6mg before. Hopefully, we will both win! Thank you for sharing with me.