Rheumatologist Visit: take Hydroxychloroquine and... - PMRGCAuk

PMRGCAuk

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Rheumatologist Visit: take Hydroxychloroquine and PMR isn't a vasculitis

artfingers profile image
9 Replies

Okay, I had a major flare over the past few months so upped my prednisone by adding 6 mg for 10 days, then settled back to 8 mg prednisone (3 at night 5 in morning) which has handled the flare. (Tons of stress nursing an ill husband). So I saw my rheumy 3 weeks ago during the flare and told her I had intense knee and calf pain and could barely walk. She insisted PMR never attacks knees or calves. Okay, I disagreed and told her I felt it was vasculitis and the inflammation in my legs was causing all the pain. She stated PMR is NOT vasculitis, only GCA . I politely disagreed again. Saw her again yesterday and despite the fact bloodwork showed a normal sed rate and my c-reactive protein levels had gone down, she insisted I need to immediately drop from 8 to 7mg AND start up on hydroxychloroquine (Plaquenil) to get off pred entirely. Nope. I'll stick at current dose for a month as it is working. When the stress eases, THEN I will do a DSNS reduction. I did ask her about Actemra as a steroid sparer but she says in U.S. it is not approved for PMR. Wish there was more research being done into biologics for PMR.

9 Replies
PMRpro profile image
PMRproAmbassador

Send her a copy if this:

academic.oup.com/rheumatolo...

Actemra may not be approved for PMR but there are some patients in the USA who have been on it. There have been a few pilot studies too. She isn't very up-to-date is she!!

Manchild profile image
Manchild

I am in the USA (Pennsylvania), and I was offered Actemra by my Rheumatologist. I chose not to take it. My point is a doctor here can and will prescribe it if he thinks it is necessary (off label). You probably need to find another doctor if you wish to try it for your PMR.

stillsdisease profile image
stillsdisease

Good for you! Doctors need telling that reading about the illness is not living with the illness.Just because I read books on cooking does not mean I can bake cakes !

Golden20 profile image
Golden20 in reply to stillsdisease

Excellent comment and so true.

HeronNS profile image
HeronNS

I don't understand that rheumatologist's attitude. You handled your flare, you are currently stable at 8mg, and anything below 10 is pretty good, and yet she wants to rock the boat and try something else?At the dose level you are at I'd be cautious about seeking Actemra. It is not without its own potentially nasty suite of side effects.

I, too, had a major flare over the past few months and my GP was nothing but supportive. Hasn't suggest any new meds, although I've been on pred since 2015, renews my prescription upon request, and makes sure I get tested every few months. Doing it my way, I'm now doing really well. Getting to see my daughter and granddaughter, albeit briefly, after two years separation (thank you covid) also seems to have helped. I don't have the additional stresses you have been dealing with, but there is something to be said for allowing an "experienced" patient to manage the course of her taper.

Zareda profile image
Zareda

My rheumatologist wants me to take hydroxychloroquine as a steroid sparer now when I’m down to 1.5mg of prednisone. Makes zero sense to me. He said steroids are just treating the symptoms and not the disease. I said well if autoimmune diseases are not curable, aren’t all meds treating the symptoms. I’m happy on 1.5 with zero side effects. I recently had cortisol & ACTH levels done and after 2 1/2 years on steroids, they are at normal levels. Sometimes I feel like I have to be my own dr because they are not looking out for me……just following the same protocols for every patient.

PMRpro profile image
PMRproAmbassador in reply to Zareda

Why on EARTH would you want to do that? What a crazy idea. Prof Dasgupta says he's happy for patients to be at 2-3mg longer term and my rheumy here says many people need long term pred like me - just most of them are at a very low dose (I'm not!).

And what did he say to your challenge? Not even TCZ is a real cure - and 1.5mg pred is rather safer than that would be longer term.

Zareda profile image
Zareda in reply to PMRpro

He’s not happy with me at all, but that makes us equal because I’m not happy with him. He will not take any input from me. So my plan is to stay on the 1.5mg of prednisone and decrease when I feel my body is ready. And, it’s a big fat no to the hydroxychloroquine!

PMRpro profile image
PMRproAmbassador in reply to Zareda

Would be the same here!

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