I was diagnosed with PMR in June 2023. I was treated with high dose prednisone as I had queried GCA but negative on biopsy. I have been tapering and every time I get to15 mgs I get symptoms .
Last time I developed aching ankles ,fatigue and myCRP went up . Rheumy put me back to 20 mgs and added methotrexate . I felt much better but developing ulcers on my lips and weight gain.
Rheumatologist stopped the methotrexate.I’m now onto 4th day of 15 and ankles and left shoulder aching. Had a hypoglycaemic episode this afternoon. shaky , wobbly and sweaty. BSL 3.6 . Had tea and sugar biscuits and still only 6.
thoughts?Taperi ng too fast ?
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Elvied
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If your biopsy was done after the high dose Pred then it is likely to be negative. Upon re-reading your post, I see that you know that. Your dose appears to be 20 mgs where you should sit for a few weeks. The weight gain is difficult but low to no carbs really helps and small portions. Some of it is water retention. The ulcers I would place at Methotrexate’s door. Are you being treated for type 2 diabetes? It is a side effect of Pred. Sorry this is abrupt but I have to fly or our version of flying.
Could be - how did you down from 20mg to 15mg pred? Did the ankles and shoulder pains come on immediately at 15mg.. if so, could be steroid withdrawal and may improve on their own in a day or two..
Bit more info would help, but it does sound as 15mg is your bête noire...so might be sensible to go back to 20mg and come down more slowly...in dose and perhaps a slower taper.
Steps of 2.5mg might be okay for some, but not every 2 weeks…..too quick… it can take that long to be sure current dose is sufficient so you can safely reduce. You need at least 3 weeks at each dose, and 4 is better.
Plus if you keep stalling at the the same dose , it’s not exactly rocket science to work out there’s an issue… not sure what planet some of these Rheumies are on.
Personal opinion - go back to 20mg - and if you want to keep Rheumy on side then reduce by 2.5mg but stay on each dose for 4 weeks..
… but if it were me I’d be reducing by a smaller drop - say 2.5mg to 17.5mg then provided you have plain tablets cut the 2.5mg in half giving you 1.25mg - and drop down to 15mg that way… again a month at a time.
You may find it helpful to make sure you always have some protein at the same time as you eat something sweet or other carbs, Apparently the protein helps to even out any sugar spikes. (Tip from my dietitian daughter when I was dealing with high blood sugar levels.)
Were you given enough folic acid along with the methotrexate? Some patients need 5mg every day except MTX day to minimise the adverse effects, especially mouth ulcers.
I gained weight in the 4 weeks I stuck it out with MTX - had never been a major problem with pred, didn't gain weight, the weight I had gained with PMR rearranged itself! MTX just made so-called pred-effects that I had never had appear!
Just because the biopsy was negative doesn't mean it isn't GCA, or even LVV (large vessel vasculitis). If it is PMR then 15mg shouldn't be too much of a problem after 5 months - but it could well be if it is LVV/GCA. But whatever - 2.5mg every 2 weeks is far too fast.
yes I’m now on folinic acid 15 mgs for lip ulcers etc. I’m going to MTX another try . Had to increase to 20 of prednisone for increased pain. Thanks for advice
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