DMARDs for PMR

[RNRN]

I am down to 4 mg of Prednisone /day. But I am starting to feel achy. My gluts muscles ache. I fill like it takes effort to get out of the chair. No where near as bad as when first diagnosed. But I am concerned as I keep lowering the dose it is getting worse. My Rheumy has suggested I start hydroxychloroquine. Not thrilled with the possible side effects. Anyone else taking this? I am told this takes a month or so to be effective.

[Hindags]

I don't know anything about hydroxychloroquine but I am wondering how long you have been at 4mgs.

How long have you been at previous taper points? Why the pressure now to reduce? 4mgs seems pretty harmless to me. Have you had similar problems getting to 4mg?.

My Rheumy tells me she will want me to try methotrexate if I get stuck. Four weeks ago I was stumbling at 8.5. I went up to 9 and struck a bargain using PMRpro's slow 26 day taper. I'm now on day 21 of that taper between 9 and 8. I'm amazed at how easy it has been so far.

The next week will be telling. I will argue to stay at 8 another week since I seem to be a slow reactor and don't want taper below 8 until I know I'm stable at 8.

[RNRN in reply to Hindags]

Long story. Took awhile to diagnose. Was at 20mg last November 2016. Starting with 10mg was reducing by 1 mg every 6 weeks. Total prednisone consumed to far is 3600mg.

[PMRpro Ambassador in reply to RNRN]

My total pred count is well in excess of 20 (20,000mg). Because I have been on pred for over 8 years and for over 4 years I struggled to get below 10mg.

Only a quarter of patients get off pred in 2 years half of us need 4 to 6 years and a few of us (5%, probably including me) have it for life.

You can only get as low on pred as YOUR body and YOUR PMR will allow. And that includes when using their so-called steroid sparers.

[DavidMF in reply to Hindags]

3 years in and on my fourth attempt to get to 8.5mgs. On the same taper, due to hit 8.5ms mid January. I awake with stiff hands and only 12 spoons, but I've learnt to control activity, I even feel more normal at times. Though just as grumpy. Having read in PMR/GCA news letter that American research shown the average could be 6 years, I'm taking it nice and slow, preferring this gentle state.

Happy Christmas to you ALL

[yogabonnie]

It's the holidays... good things as well as bad things can be stressful!!. I wouldn't taper until they are over. Something I learned from the wise people on this forum!

[Longtimer]

I would be happy at 4mg!....don`t rush it now, this is the tricky time from all accounts I`ve read....My sister has RA, and did try Hydroxychloroquine.....it took a long while to have any affect, in which time you could do the slow method anyway.....I asked my Rheumy about it once, he said no point.....

Good luck....

[Celtic PMRGCAuk volunteer]

RNRN, a Rheumatology Professor, speaking at a Vasculitis Symposium a couple of years ago, recommended switching from Pred to Hydrocortisone (another form of steroid) if there was a sign of adrenal insufficiency at 5mg Pred and below. I certainly would prefer this option to Hydroxychloroquine IF really necessary. Whether this might apply to you or not is difficult to assess without further information, for instance how long is it since diagnosis, have you had an adrenal function test to see whether your adrenals are kicking back in with their normal cortisol production (this usually starts happening around the. 7.5mg dose of Pred), and are you following one of the slow tapering plans recommended at these lower doses? From what you have told us thus far, and as the others have already suggested, it certainly sounds as though a small increase in your dose may answer your question - I do hope so.

[PMRpro Ambassador in reply to Celtic]

Hydroxychloroquine is touted by some doctors as a steroid sparer - and one that they seem to think has fewer side effects than, say, methotrexate. Don't think they are thinking of it to improve adrenal function.

[PMRpro Ambassador]

"My Rheumy has suggested I start hydroxychloroquine. "

What is the matter with these doctors? You are at 4mg - you are NOT reducing relentlessly to zero, you are looking for the lowest dose that manages the symptoms as well as the starting dose did. So-called "steroid-sparers" won't replace the pred, only pred works in PMR, and while for some people they MAY potentiate the dose of pred you take so you get a bigger bang for your buck by the time you are down to 5mg they should have stopped worrying about it - you have to get your adrenal function back anyway.

You do not "get stuck" - you find the dose that manages YOUR PMR, not someone else's, until that underlying cause of the PMR symptoms burns out and goes into remission. And that can be any time from 2 to 6 years for 75% of patients. The other 25% take even longer.

In the most recent Guidelines (2015), in Recommendation 7 they say:

"The group recognised that no recommendation can be made for the use of other non-biologic (ie, conventional synthetic and conventional targeted) DMARDs in PMR because of the lack of good evidence from PMR studies. Hydroxychloroquine was investigated by a single very low QoE retrospective study reporting no benefit regarding relapse rate."

ard.bmj.com/content/74/10/1...

When I spoke to the lead author of the Guidelines a couple of days ago (he is now my rheumy) he didn't mention hydroxychoroquine. Nor was he particularly put about by the fact I rejected the use of methotrexate or leflunomide. That is while at 8mg after over 8 years on pred. When I get back to my more usual 7mg and less he will be happy.

[RNRN in reply to PMRpro]

Thanks for the link. Item seven states: The efficacy of MTX was addressed in four randomised

controlled trials and one retrospective study testing the use of

MTX plus oral GCs (initial prednisone doses ranging from 15 to

25 mg/day). There was moderate to high quality of evidence

(QoE) from studies indicating a benefit of MTX regarding

remission (1 study), relapse rate (1 study),discontinuation of

GC (1 study) and cumulative GC doses (3 studies).

Evidence from one to four studies (1 related to remission, 4 to

relapse, 1 to discontinuation of GC) indicating no benefit regarding

these outcomes was of very low quality.

So one 1 of 4 studies said MTX did not show benefit but the other 3 did. Being I have hemochromatosis and MTX is hard on the liver that may be why hydroxychloroquine was suggested.

[PMRpro Ambassador in reply to RNRN]

Reducing slowly is as likely to work as hydroxychloroquine to avoid flares.

[Hidden]

Working cardiac ICU for over 30 years... it took a lot to change my mind about healing as many drugs as I've given in the past.... but the same thing Big Pharma synthesis in the lab is found in nature. Inside our bodies we have an Immune System and that is the system that heals a cut or keeps cancer cells at bay... it is our only protection but as we age and our environment weaken our immune system and disease sets in. Our bodies make a lot of medicine when we have a strong immune system.. to make a real long story short there are 2 main things that builds the immune system, Colostrum, capsules only and Probiotics with at least 40 billion CFU's... Eating fermented foods like sauerkraut, pickles, yogurt with live cultures.. I teach this on fb but Google is a big help.. much of our illness esp as we age is caused by inflammation.

[jinasc in reply to Hidden]

One thing, I would not class 50 as being in the 'ageing' bracket.

Both the PMR existing guidelines and also the new one for GCA when they eventually come out. Lowered the age range down to 50. Patient Power worked this time.

[SheffieldJane]

Thank you for your post nurse1946, it made me feel looked after. Have a lovely Christmas and a happy, healthy, prosperous new year too.