I’m in need of your advice and counsel. Yesterday, I had a telehealth appointment with my rheumatologist. I was diagnosed with likely GCA this past April and am currently taking 40 mg prednisone and 15 mg weekly of methotrexate. My last blood work in May showed inflammation markers were within normal range.
My rheumatologist wants me to begin tapering 5 mg a week and if I have problems go up 5 mg for 2 weeks. After reading the posts here and medical articles, it seems like this is a fast taper. When I get to 5 mg, is it safe to drop to zero? Your experiences certainly indicate the answer is no.
I don’t want to challenge my rheumatologist’s knowledge and experience, but I am worried. I was planning on asking some questions via my online patient portal . For example, if my severe headache along my temporal artery starts, do I go to the ER? Is it safe to drop from 5 mg prednisone to zero?
I get additional blood work done on July 1 and my next rheumatologist appointment is September 26. Any thoughts, suggestions are welcome. Thank you all for your support.
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Moaningxcat
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First point, I’ve never been on MTX … but I certainly had GCA. And from all I’ve read on here that doesn’t sound a good idea.,
5mg per week is a fast taper even with MTX … you need to be on each dose of Pred at least 2 weeks to be sure it’s okay before you drop down…
And certainly you can’t be dropping that quickly once you get below 10mg… sounds like a suicidal mission. 😳…especially if you find the MTX doesn’t work that well for you. It’s great for some, but not all.
As for going from 5mg to zero - forget it! Likely to cause an adrenals crisis….
… and yes, any return of GCA headaches then ER.
… and maybe consider another Rheumy - if possible…
Thank you, DorsetLady! I will plan on staying on lower dose for 2 weeks at a time. When I get to 10 mg, I will follow the plan you have outlined. We shall see how this goes…
Personally I would only reduce when you are sure that the pain is under control. Any medic who suggests going from 5mg to 0mg in one go should be shot!
I am going to ask rheumatologist about going from 5 mg to zero… I’m also planning on asking for a 1 mg prescription of prednisone. Currently, I have 10 mg and 5 mg. Thank you!
This has come up before where the doctor has either forgotten that adrenal function may not have been established quickly enough to be able to go from 5 to zero mg, or they think it isn’t a thing. I would be asking how to spot if you have adrenal insufficiency after being suppressed by steroids and if you do, how they mean to navigate that. They may deem you to have been off Pred so quickly that you are not at risk, but generally the guide is 3 weeks above 7.5mg and you are more than that at a moderately high dose. People vary too.
They are also making the assumption that MTX is going to work 100% for you thus negating the use of steroids which is bold. I would be asking them how many GCA patients in their experience achieved lasting remission with this regime. Fair question I’d have thought.
MTX isn't renowned for being a fantastic steroid-sparer in GCA or PMR although it can work well for a small cohort of patients and the thought of 5mg per WEEK strikes me as really not tenable. You would probably struggle doing that rate if you were on Actemra - and that definitely works in GCA.
5mg at a time at 40mg is probably OK - but NOT every week, if you must go fast then 5mg every 2 weeks might work.
All the normal range blood markers mean is that at 40mg pred the inflammation is under control. It does NOT mean that the underlying cause of the GCA is no longer active and that you can get off the pred.
A more normal and realistic approach might be 5mg every 2-3 weeks down to maybe 20mg. Then 2.5mg steps to 10mg and from there, 1mg at most. And even that is pretty fast unless you are very lucky - or on Actemra.
Thank you PMR pro for a more reasonable taper schedule and information regarding MTX. This helps to put things in context. I truly appreciate your advice.
I also started on 40mg and was told to reduce at 5mg/week (though without MTX) - total disaster. As DL and PMRpro say, that might work down to 20mg or so, but not below. At the time I didn't know any better and battled down to zero in 13 weeks, then within 17 days was back on 15mg/day due to the PMR returning as though it had never been treated. This kind of reduction regimen is possibly a diagnostic test, to "see what happens". For me, there were no physical ill effects, strangely, but my "mood" was another story entirely, and that was totally due to the rapid change of dose. Note that amongst the possible effects of pred are "manic depression" and "steroid induced pyschosis". When initialy diagnosed, the specialist warned me that "some people go mad". If anything bad happens, raise the dose and maintain it, and seek help.
Thank you for sharing, Blue Kiwi. Sounds like you had a horrible experience and that’s what I’m trying to avoid. I was also thinking that this reduction regimen is being used as a diagnostic tool. I will be asking lots of questions about this tapering and I plan on staying at a 5 mg reduction for 2 weeks instead of one. When I reach 20, that will be another story.
The response to pred CAN be used as a diagnostic tool - in PMR. But to use it in possible GCA is, at best, poor practice and at worst very risky. Pred is sometimes the only thing standing between the patient and irrevesible loss of vision. I don't want anyone playing games with my sight thank you very much.
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