Timing of tapering in relation to easing of side effects

Posted by macferse @macferse, Jul 29, 2022

Hi, over the 4 months I have been on Prednisolone I have developed every side effect listed. Weight gain despite starting a new strict diet in an attempt to control this effect, buffalo hump, facial hair a wild boar would be proud of, hair loss on head but side burns live Elvis, acne, mood swings, insomnia. I'm wondering at what point on the taper down do these side effects start to ease. Does anyone have any insight into this. I know everyone's different, but there may be a known pattern. I know these are mostly cosmetic and only damaging to my vanity. All serious side effects like bone density loss, glaucoma, diabetes are being monitored.

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John, Volunteer Mentor | @johnbishop | Jul 29, 2022

Hi @macferse, I think that may be the proverbial 64 thousand dollar question if you are old enough to remember that TV show. Vanity or not, I'm with you about the side effects. With my two times with PMR and tapering down from 20 mg prednisone dosage, I only had the weight gain the first time around and it took me 3-1/2 years to taper off. I made some lifestyle changes the second time around and was able to limit the weight gain to around 5 lbs. There are a couple of other discussions you might find helpful.

-- How did you cope with the side effects tapering off prednisone?: https://connect.mayoclinic.org/discussion/taper-side-effects/
-- PMR Dosages and Managing Symptoms:
https://connect.mayoclinic.org/discussion/pmr-dosages/
-- Prednisone Side Effects:
https://connect.mayoclinic.org/discussion/prednisone-side-effects-1/
@tsc @kmeikle1 @ncgal @juneh @aspine and others may also have some thoughts or suggestions for you.

Have you tried making any lifestyle type changes, diet, exercises, etc...?

kmeikle1 | @kmeikle1 | Jul 29, 2022

@macferse I'm wondering what dosage you are on. I think it does get better as you taper (or maybe I'm in denial or have gotten used to my new self). I'm on 11 mgs. and mostly not bothered by side effects. I do sleep well. I've had PMR for three years, started at 15 mgs. prednisone and have been as low as 7.5 (briefly as I had a flare at that dose).

Teri | @tsc | Jul 29, 2022

Hi @macferse, About a year ago last June, I started on 40 mg prednisone for Giant Cell Arteritis (GCA), initially tapering down by 5 mg every two weeks. I had a moon face, red cheeks and an increased appetite. The GCA had made me anorexic, down to 93 lbs, so increased weight and full cheeks were an improvement. I had tons of energy, could only sleep a few hours a night, and could talk a streak. I felt like a zombie on speed. I also noticed thin skin and strange marks, I looked up called "Prednisone Skin." Below 20 mg, it started getting better. Now I'm down to 1.5 mg a day and doing well. I gained back about ten pounds, which I sorely needed. I exercise a fair bit everyday. As @kmeikle1 asked above, what dosage are you on? Have you started to taper yet? Don't despair, it does get better.

aspine | @aspine | Jul 29, 2022

Hi, @macferse, I can't blame you for feeling disappointed with the side affects. It feels like adding insult to injury when you already don't feel so great, and then you have to look in the mirror! I had hair loss to the point that I was starting to shop for a wig. (There are some great ones out there!) I had moon face. I've gained about 8-9 pounds (since diagnosis in 9/2021). Got funny red marks on my skin. I suffer from fatigue. Can't stay on my feet very long. But the plus side is - the pain is gone!! I started on 15 mg. Am currently almost to 6.5mg (for the 2nd time). The moon face is mostly gone. And my hair has come back curlier and kinkier than before, but I don't need a wig. I'm a terrible dieter, but am attempting to at least curb the salt and carbs, and maybe get a little better in that department. The weight is stable for now. We are all different. The rest of your issues can probably be dealt with cosmetically for now, and just hope that as you lower your dose, they'll resolve themselves on their own. Good luck to you.