My Rheumatologist started me on Hydroxychloroquine 400 mg daily when I had a PMR flare up while tapering Prednisone down to 2 mg. Now I am back up on Prednisone 10mg and have taken Hydroxychloroquine for 3 1/2 months. Symptoms have not become better if anything they are worse. A major side effect from Hydroxychloroquine are frequent liquid stools. I am wondering if the diarrhea decreases absorption of Prednisone and the medication itself has no effect. In addition to these two medication the Rheumatologist wants to start me on Methotrexate. I am very reluctant to do that and considering stopping Hydroxychloroquine altogether and continuing only Prednisone.
Does anyone have a similar situation or any insights or suggestions?
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PMRinAVL
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Despite one poor study claiming almost miracle results with HCQ, it is rarely used in PMR and when it is it doesn't seem to do much. There is one person on the forum currently who is on it instead of pred which they can't take and it seems to be working.
Nothing would persuade me to take multiple immunosuppressant drugs in an attempt to get off pred - especially if you have already been down to 2mg. The flare was probably due to overshooting the dose you need and all it needed was a small adjustment. If you have constant loose stools it is quite possible you aren't absorbing the pred fully - depends where the effect is starting , upper or lower GI tract. But it is an effect I wouldn't consider tolerable anyway.
There have been others who have tried it - didn't get them off pred. Your are having regular eye checks aren't you? That is a possible adverse effect.
If you can get below 5mg on your own, even if you can't get off, I would refuse to rock the boat with experiments your rheumy wants to try outside the framework of a clinical trial. Because that is all it is as far as I'm concerned. Sorry,not feeling very kind in that direction this morning!
I have also just looked at your history - your rheumy seems to like dancing to their own tune since you were started at 10mg originally. The 2015 Recommendations suggest 12.5-25mg as the range for the starting dose and it is unusual to start at less than 15. It may sound a moot point if 10mg worked for you - but my experience in all the years on the forum has been that starting very low doesn't mean an easier journey. Often a good "clear out" at the start works better longer term. In the case of GCA, starting the patient on a 3-day pulse therapy with infusions of up to 1000mg per day resulted in many cases in an easier reduction afterwards and a lower cumulative dose of pred. It hasn't been tried in PMR - but a few people who have had PMR twice have said that the first tiem they started at a higher dose of 30mg which was fashionable for a long time - and the whole thing went better than the second time when they started at 15mg because in the meantime it had been decided that pred was too "dangerous" to use at higher doses.
Reading your post I'd say you really already have the answer to your question. You've given the extra med a fair trial and are no better, in fact things are worse. Probably, as PMRpro implies, because the hydroxychloroquine is having no helpful effect. If I were you I'd certainly try going back to just pred again, and give yourself time to get stable at your current dose, then taper very slowly. How bad was your flare? I had got down to 2 mg and was there, more or less, for several years, even a brief time at zero. But last year I had a major flare which needed 10 mg pred to get me back on track, although I didn;t need to take 10 more than a couple of times. I was around 7 for a bit. However, a year on, I'm back at 2.5, with an occasional dose of 3. No extra medications at all. Sometimes we (and possibly our doctors) just need patience. Good Luck!
Hi , I have taken 200 mg of hydroxychloriquine for about 2 years. No adverse effects. I’m now off pred ( just 4 weeks) . The rheumatologist wants me to continue with it for a few months then wean off that too. Fingers crossed 🤞🤞🤞I hope you feel better soon x🌺
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