I have just started hydroxychloroquine (HCQ) treatment after my rheumy rejected an original PMR diagnosis in favour of connective tissue disease. Under her instruction I rapidly came off Pred (20mg down to 0 in a month !!) to allow all other telltale symptoms to reveal themselves ready for our face to face appointment. Exhaustion together with excruciating shoulder, neck, back and leg pain came back - apart from childbirth, it really was the worse pain I’d ever experienced😬 No butterfly rash, mouth ulcers or significant joint pain. Undeterred, my rheumy still suspects something else and told me to stay off oral pred at all costs. We compromised and I was given an IM injection (120mg methyl prednisone) for immediate pain relief while HCQ gets into my system. This has reduced my pain, but only to the point where it is continually hovering around unbearable. I am worried that I could “just” have had PMR all along and I may be about to have the worst couple of months of my life. Tonight I desperately googled HCQ as alternative PMR treatment and was pleasantly surprised to find this article:
It seems to be a valid piece of research to me. For all those desperately seeking an alternative to pred treatment, could HCQ be worth a try? I’d love to hear everyone’s view on this. Thank you, Susie.
The Brawer paper is not regarded as particularly reliable by a few of the experts in the field I have asked. It is an outlier and no other studies confirm it.
I "did" PMR without pred for 5 years - purely because I wasn't diagnosed. All I can say is I'm glad he wasn't my doctor because to leave patients effectively untreated for the duration of PMR is really rather uncaring. Whether it is right or not, corticosteroids are the mainstay of management of PMR - because they work. Like a few others whose diagnosis was delayed for one reason or another, I suspect my later struggles have been partly due to the long period of inflammatory disease my body was subjected to. Hydroxychloroquine is not a very unpleasant drug to take - but it too have adverse effects. I don;t mind adverse effects when at least there is something positive to balance them out.
I suspected that this research had not slipped past you PMRpro! Please can you point me towards more reliable evidence of HCQ being an ineffective treatment for PMR? Thank you
is the paper quoted in the 2015 Recommendations for the management of PMR as the only study but with poor quality evidence for the use of HCQ. Unfortunately you can only see the abstract without paying! My experience of S Korean research of this sort is this was probably something given to a load of students to get papers on their CVs. Don't get me wrong - there is excellent work to be found in the Far East in general but their systems do tend to result in a lot of mediocre stuff. And PMR really isn't very common amongst Asian populations.
That’s interesting, thank you. The article I posted was published in 2016 so it came out after these recommendations. It would have been useful for it to have been assessed as part of this work. I agree with you about the Korean research too. So overall, there appears to be surprisingly little published about HCQ treatment of PMR. Perhaps others on this forum have had some experience of this...
Hi Susie_D, I don't know much about using hydroxychloroquine as a viable treatment for PMR, but I do know that it can affect your retinas (in rare cases). You should have your eyes checked regularly, but I am sure your rheumatologist would be all over it.
I’ve been on hydroxy for over a year, touch wood have managed to get my pred down to 4 mg. I had my eyes checked fairly soon after I started on it. Need to have them checked annually.
I’ve been on hydroxychloroquine for two years now. I’ve had PMR or whatever since March 2016. Have struggled with lots of aches and have struggled to taper prednisolone hence trying this. I’ve also had very elevated liver function tests throughout so very reluctant to try methotrexate. I’ve tolerated hydroxychloroquine no problem but not sure it’s making any difference. I’m only at 6.5mg now and throughout my time on hydroxychloroquine I’ve still had swollen joints, pain and difficulty reducing my steroid dose.
I’ve prompted my own eye checks since starting steroids - found that advice on here, nothing from GP or rheumatologist. Eyes have been fine throughout and most recent check last week I was told that there was no sign of hydroxychloroquine induced retina symptoms.
Tempted to stop hydroxychloroquine and just stick to the steroids but I’m sure my rheumatologist will discourage that. She is of the belief that some drugs interact together and work well for some patients and that there is not always an obvious reason why. All sounds plausible to me!
It is fascinating the wide ranging theories our rheumatologists have but it just goes to show how difficult PMR is to live with and treat as we all read about here on a daily basis.
Thank you for sharing your experience. HCQ is obviously not a cure all, but it certainly seems to be worth a try. I continue to be amazed, both by my own experiences and by posts here at the varied attitudes of consultants when it comes to this condition. Apart from the wonderful support and advice, I’ve found that this forum provides invaluable information that really cuts through the fog and confusion that can be left behind by well-meaning health professionals.
Hi Susie_D, I was diagnosed with PMR in early April 2020. My GP started me on 15mg Pred and referred me to a Rheumatologist. He started me on Methotrexate injections 0.5ml (equivalent to 25mg) weekly in May. He's now prescribed Hydroxychloroquine 400mg daily, which I'm about to start taking. I trust his advice as he's one of Australia's leading Rheumatologists and participates in international research.
I'm currently taking 9mg of Pred. I got down to 7 but couldn't sustain that. I was so keen to get off Pred. and reduced too quickly, my own decision. I've since learned more from this wonderful group about the dangers of reducing Pred too fast! My Rheumy advised going back to 10mg, but me being me, I settled on 9. I can't imagine going from 20 to 0 in a month as you did.
So, it will be interesting to see what my PMR does with the combo of MTX, Pred and HCQ. I meet with my Rheumy again in January and am hoping to start reducing the Pred again then.
I hope for you that a diagnosis can be reached and that the appropriate treatment gives you some relief.
Thank you Linda20. Yes that fast reduction was horrible. Previously I’d tried and failed to get below 15mg pred (from 20mg) using the dead slow taper. But when I just kept reducing, I was surprised that things didn’t get massively worse until I got down to 5mg. Then I had to rely a lot on my family as I was in bed most of the time.
Methotrexate has not been mentioned to me so far, but I guess it could be a backup option in the future. I am keen to know how you get on with this treatment mix, I really hope it works for you. Please keep us updated.
I like the sound of your rheumatologist. Where in Australia are you? I’m a bit like you, eager to get the pred dose down but now know, from this group, that I have to be very patient.
Hi Siral, sorry, I’m in the UK. My situation is a bit tricky. I was first told that I had PMR by a senior, experienced rheumy during a private appointment and he advised pred treatment and a slow taper. Then my NHS rheumy connected some dots: long standing Raynauds, hypothyroidism, weakly positive ANA test and early onset PMR type symptoms. This led her to strongly suspect undifferentiated connective tissue disease. First I wanted to believe I had PMR as pred completely suppressed my symptoms and I could just get back to work and get on with my life. But as I experienced more side effects and my repeated attempts to taper ended in failure, I became more scared she may be right.
I really don’t know which condition I have, but perhaps it doesn’t matter much if they both fall somewhere on the same autoimmune spectrum. I am not anti-pred as I know all medications produce side effects, but I guess I want to know whether my symptoms could also be suppressed by something else. Also, I think it would be wise to keep my pred ace up my sleeve for later if it turns out that I have a lifelong chronic condition to contend with...
By the way, just to be clear, I would never recommend such a rapid taper to anyone. It can be dangerous. With a solid PMR diagnosis and no complicating factors, I’d be following the wise advice provided by members of this forum: persevering with repeated slow taper attempts and accepting any side effects through gritted teeth
Thanks for all this info. My situation certainly isn’t as complicated as yours. I had to google the different medications you mentioned and then realised their purposeS. What a juggling act you have. I hope it all works out ok.
Sorry, that was way more info than you needed! I really didn’t mean to offload on you, but if it’s any consolation, it did help to get all that off my chest 😉. I don’t like to go into detail with friends and family any more because I get sad when I see their eyes glaze over. It’s not that they don’t care, they just find it hard to understand. Is your situation under control? Even if it is less complicated, it doesn’t necessarily make it any easier...
Hi Susie_D, thanks for your reply. I'll certainly provide an update.
I also have Psoriatic Arthritis which has flared up considerably after being in remission for a long time. This started about 3 months before the PMR diagnosis. So, along with the PMR muscle pain, I also have some significant joint pain going on from the PsA. The methotrexate was prescribed for the PMR, but will also help slow down the PsA damage.
How do you differentiate between the PsA and PMR? Despite classical PMR signs and symptoms (except blood markers) and never any history of psoriasis, one rheumy wanted mine to be PsA.
I've had PsA for about 15 years, however after prolonged treatment with methotrexate it had been in remission for several years. I was able to stop MTX. When the joint pain started again, x-rays via my GP diagnosed osteoarthritis but when I saw my Rheumy early May for the PMR, he advised that due to the type of joint damage on the x-ray, it is actually PsA. And, just to compound things, I do have some other joints with osteoarthritis.
DadCue, thanks for that summary. I'm hoping for some positive results from the HCQ. I'm so keen to get off the pred, I'm such a poor sleeper even without red and now my sleep is pretty much wrecked.
Yes, I have PsA (15 years) in addition to PMR (8 months). The PMR came on suddenly early April with fever, chills, typical muscle band pain and weakness upper body and hip/thigh/back, high levels of blood inflammatory markers (typically around 5 for normal and my levels were over 90). My GP diagnosed PMR, prescribed Pred and referred me back to my Rheumatologist. He agreed with my GP's diagnosis.
When diagnosed with PsA 15 years ago, I was prescribed Pred intravenously for 1 month, then Methotrexate which I took for several years until the PsA went into remission.
My Rheumy has said that research is currently being done into PMR possibly being viral (in the corona virus family). A couple of indicators are the fact that PMR is seasonal, and that it has a finite life. Interesting things popped up when I googled Polymyalgia Rheumatica and Virus together.
Wow! This discussion thread is so interesting to me. I’m another case of complicated challenges. First I just joined this group. I’m in the USA. Joined the Facebook group first and someone there posted about this one, so joined here as well. I’ve had psoriasis since age 13. Sick with PMR since March 2020 at age 60. Diagnosed in June. Got dosing of prednisone that worked in September. Had to retire early and then move to survive financially. So changed rheumatologists and the new one thinks I have lupus. I was so sick that I barely read my test results this past summer so now I looked at them and although my CRP was in the 40s, I did have two out of 4 markers for lupus show up positive. She started me on hydroxychloroquine this week and gave me new blood tests. I am still on 25 mg of prednisone and scared to stay on as well as scared to get off. My blood sugar is going up along with my weight so both GP and rheumatologist want me off the prednisone, but I was in such severe pain and bed ridden this past summer so don’t want to go back. My doctor wants me to hold off on tapering until follow up visit in 2 more weeks. She gave the choice between methotrexate and hydroxychloroquine and I had read about both drugs. The methotrexate is a folate blocker and I know I do better taking that supplement so choose the hydroxychloroquine. Will follow up with how I’m doing. My doctor says it takes 3 months for hydroxychloroquine to fully work.
If you have had psoriasis most of your life and then developed polymyalgic symptoms - did no-one consider psoriatic arthritis? A lot of rheumies want to make PMR symptoms into that when the patient has never had psoriasis!!!
With regard to the weight and blood sugar problems - cut your carbs drastically, especially all processed foods and added sugar. It really does work to avoid weight gain and steroid-induced diabetes.
My symptoms last year were classic PMR. Started with 40 day low grade fever. Ended up in nursing home unable to get out of bed. Prednisone helped. My original referral to rheumatologist was before I got sick. Sore knee and referred to orthopedic doctor. He sent me to rheumatologist to rule out PsA. By the time I got to rheumatologist I had Polymyalgia. First rheumatologist ruled out lupus because it is rare to have lupus and psoriasis, but now I’ve read that it it does happen. When I look at symptoms of all the possible disorders and my blood tests — Polymyalgia Rheumatica and lupus are closest to what I have experienced. If hydroxychloroquine helps, I have read it helps lupus and RA. Also read that there is just as strong a correlation between Psoriasis and RA as PsA. A nurse who worked for a rheumatologist posted to other group that rheumatologists figure out which autoimmune disorder it is based on your reaction to meds because they are very difficult to diagnose. Regarding diet, I started keto at menopause and after years it stopped working so went to intermittent fasting and rotating through the week between no carb and low carb. I ended up feeling like I was going to pass out every weekend. I believe my blood sugar was going low, so I eat more paleo now. I’m very strict with eating, it is having no effect whatsoever. I fortunately lost over 100 pounds in my 40s. And when I first got sick with PMR lost appetite so my weight dropped then. Now back up. But still down 75 pounds overall.
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