I have reduced down to 8 mgs pred after flare of GCA in April when I went back up to 40mgs. I have just been to see a new rheumatologist. ( my 3rd since I started this journey). Unfortunately this one doesn’t seem very knowledgeable about GCA. He kept referring to my arthritis?? I mentioned that my previous rheumatologist and I had talked about a very slow taper once I reached 7mgs but he interrupted and said I should reduce by 1mg every 4 weeks and I would then be off pred!. I asked what if I found that difficult and he said not to worry as he would add methotrexate to help with that…..
I could be wrong but I didn’t think that should be done at such a low dose. He said of course it should as I needed to come off pred as soon as possible.
Advice please.
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Golfers1
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This is a reply today on another thread about MTX. The author has been on hydroxychloroquine which has made no difference. Some doctors are believers - but for a lot of patients, it is fairy dust!
"Also there is very new data from the American College of Rheumatology meeting, at minute 49.28 the discussion "Rheumatology Round-Up with Dr. Jack Cush & Dr. Arthur Kavanaugh", a placebo controlled trial for PMR that showed no benefit whatsoever of methotrexate @25mg a week.
It was big news on X last week with former believers, rheumatologists, changing their minds.
Let your doctor know about this new data on methotrexate."
I've not been convinced about any of the so-called DMARD steroid sparers at all and this backs up my suspicions. There ARE patients it may work for brilliantly - but it is a small cohort and I suspect that whatever it is they have, it isn't the PMR we talk about here. PMR is not the disease, it is the name given to a set of symptoms and there are different underlying causes. Pred works on most of them but you may not be able to get off it. MTX and HCQ both seem to work for a few - and you have to try them to find out if you are one. But there are no guarantees.
PS - if a RHEUMY can't get the name of the disorder correct, and then backs it up with a process that might be more appropriate for an inflammatory arthritis rather than an arteritis I think I would be looking for another, better informed rheumy. You can ask about that through PALS.
Very interesting and thank you for sharing. Concerning regarding the increased CV, and infection mortality risks from long steroid use increase after 3/4 yrs on steroids. Risks don’t return to baseline on discontinuation.
After 7 yrs on steroids realisation that they could be life limiting. But they have significantly improved my quality of life. Hopefully a healthy life style will counter some of these risks, but this was not addressing the abstract.
What happened to the previous rheumy?? This one obviously doesn’t consider resumption of adrenal function. If your condition is in remission the adrenals will be the limiting factor. Methotrexate won’t help you there.
Symptom wise are you ok? I can’t see why a slow reduction is a problem from only 7mg.
I’m not sure what happened to the previous rheumatologist but apparently the new one is permanent. I am ok at the moment although recovering from compression # at T4. I am considering just following our slow tapering plan for enteric coated tablets.
What I can't believe is that all were in remission and off prednisone in 52 weeks. Criteria for remission? I don't actually believe that. The actual paper I haven't seen.
I don't see any figures for followup on relapse post 52 weeks. You might get someone off pred at 52 weeks but at 56 weeks they might be back to the start. Or you have to question the diagnostic process.
OMG sounds like my GP. This is my almost 3rd year on Pred for PMR. I'm trying to get below 6.5 mg, but it's caused a nasty flare. Upped the pred to 11, but still very sore and don't have enough to go any higher as she will only give me exactly enough for 28 days at the dose of the month. I've cut my taper to .5 bi-weekly to give my body a chance, but I would like to stay on new doses for at least 6 weeks. Not possible with this GP. She says I will thank her in the end. No one has ever mentioned MTX (which may or may not help anyway).
I was prescribed Mx 8 years ago but a very low dose of 10mg. I was never convinced it was doing much and I stopped it for 2 weeks when I had my covid booster about 6 weeks ago. Then I decided to just stop taking it and I feel no different without it. I went to my gp for an unrelated problem and he asked me why I hadn’t filled my prescription for mx so I told him I’d decided not to take it. He got very uppity and stated that he wanted me back on it asap. I’ll wait till I see my rheumy next year but I really don’t want to be on it. I’m just going to start a Pred taper from 2.5 to 2.
So, you have been taking a drug for 8 years with no obvious benefit. And every drug we take has potential consequences. I think we all feel frustrated and powerless sometimes.
Sorry to be so tardy in replying Golfers1. Had to change computers. I refused Methotrexate. I am now down to 1mg Pred. I was prescribed Leflunomide to help when I kept flaring trying to reduce beyond 22.5mg. I think that I now have several conditions due to the potpourri of medications prescribed. I intend to stop all soon and see what happens. In truth, I have been a good boy up to now and I feel on the home straight. I'm just so tired of taking pills. Looks like I'm stuck for life on Apixaban and Bisoprolol. The rest can go when I'm off Pred. Not long I hope. unfortunately, the side effects of pred. have been nothing short of disastrous. HeyHo
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Methotrexate instead of Prednisone?
Wondering if anyone else has experienced this possible start to GCA?
What to think?
Will low dose of pred alter the outcome of the test?
GCA flare or not.
