Hydroxychloroquine and PMR

[Italybound62]

Hello. My Rheumatologist is rather young, new, inexperienced (on long wait list to see a new, good one) and she has given me some not so good advice in the past. She wants me off Prednisone.

I finally agreed to take Hydroxychloroquine but she did not give me directions on how to now modify the Methylprednisolone taper. Prior to the Hydroxychloroquine, I have been following the 7 week slow taper from this group (against my Rheumy's recommendation to taper very quickly which of course failed last time).

My question is being that I am now on Hydroxychloroquine, can I increase my Methylprednisolone taper speed? or no change and keep to the slow 7 weeks?

what would be the suggested taper plan?

I'm currently working from 5 mg to 4 mg and feeling good.

Thank you.

[PMRpro Ambassador]

If she wants you off pred - why isn't she suggesting Actemra (GCA and works for PMR) or Kevzara (approved for PMR)? However - if you are at 5mg without anything - why's she complaining?

I wouldn't speed up the taper - there is no guarantee the HCQ will make a significant difference - like MTX or LEF it does for some but by no means everyone. And anyway, at this stage you are as much governed by the return of adrenal function as you are by the GCA/PMR.SO the slow taper is as required now as it would be without HCQ. After over 3 years on a steroid, it is likely to take 9-12 months to reestablish adrenal function. And all HCQ might contribute is preventing a flare and a need for more pred - the only trigger for the adrenals to produce cortisol is a low level of pred at midnight-ish. In the absence of cortisol, you need some pred to avoid an adrenal crisis.

[Italybound62 in reply to PMRpro]

Okay that makes sense Thank you!!

To answer your question. She does not want to give me a biologic like Kevzara as she has always really believed I don’t have PMR. also I’m on a low dose of steroids. If I were stuck at higher dose then she would suggest it. Also I think there’s some sort of insurance process needed to get approved for Kevzara so otherwise very expensive.

[PMRpro Ambassador in reply to Italybound62]

What does she think you have?

[Italybound62]

she doesn’t know. I think she believes it’s just aches coming out that have been hidden by the steroids

[PMRpro Ambassador in reply to Italybound62]

That fits with 2 things - adrenal insufficiency and inadequate managed PMR. And you could say the pred hides both of those ...

[Italybound62 in reply to PMRpro]

I agree.

[msdale]

Hi - just my two cents. My rheumatologist finally convinced me (after a year of suggesting it) - to try hydroxychloroquine. Of course, everyone is different, but my experience was that I was on the hydroxy for about 8 months and it made no difference that I could tell, so she took me off of it. (Now she wants me to take methotrexate, which I really do not want to do). I've been stuck at 5 mg for over a year. Any time I go below 5, I end up flaring. At our last meeting in October, she said she wanted me to be at 2 mg by the time we meet in January. Sigh.

[PMRpro Ambassador in reply to msdale]

Hasn't got a clue has she really. If you are on 5mg pred, then adding another drug is probably adding more adverse effects than the pred has. I know Prof Mackie would think twice at that dose. And to get from 5 to 2 between October and January would require some rapid awakening of the adrenal function!

[msdale in reply to PMRpro]

Thanks, PMRpro. My thoughts exactly!

[Sandmason in reply to msdale]

Ive been on hydroxychloroquine for over a year and I have not seen any benefit at all. I think since it helps lupus, and Sjogren's, they throw it at us.

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.

[Italybound62 in reply to Sandmason]

I have been on hydroxy for only 2 months and feel no different. I know it’s not long enough yet. . It was difficult to answer my Rheumatologist when she asked how I was feeling on it because it’s not bad/ no change. She took that as a positive. It’s difficult to attribute feeling good to hydroxy because how do I know if I would feel the same without it. For me I guess the true test will be of if I can get to 2mg or 1mg or less of Prednisone.

[Sandmason in reply to Italybound62]

HCQ takes 3 months to build up. I had severe discoid lupus back in my 20's and I took it for 7 years along with every other day prednisone. I don't think it helped but how would I know? The final solution was seeing a much better doctor Chief of Derm at a teaching hospital, who used a topical STRONG steroid, my other doc was afraid of it, and my skin was all better in 48 hours. The lupus never came back. I also stay out of low latitude sun.

[PMRpro Ambassador in reply to Sandmason]

Hallelujah!!! Prof Mackie is currently doing a study because she has had some patients with super results on MTX. But I will lay odds that these are patients who don't actually have "just" PMR, and that comes down to the idea that the greatest unmet need in PMR is a reliable diagnostic process and marker. It is the same with HCQ - it works for a few patients, I know a few. But it is a select few and you need to know how to identify them.

62 patients is small, hopefully this will be combinable with other studies. And I hope the Believers change their minds. Can only benefit us in the long run.

[PMRpro Ambassador in reply to Sandmason]

Could you do me a favour and post this as a new thread so it is easier to find - then I'll work out what to do with it after that!!!!

[msdale in reply to Sandmason]

Thanks - I definitely want to look at that study/data on methotrexate before my next visit so I'm 'armed' so to speak....