I've been taking Hydroxychloraquine (HCQ) for about 10-12 months I think, maybe a bit longer. At the beginning of the year I was on 22.5-25 mg Pred and had been stuck there for long time, I just couldn't reduce. But this year I have steadily been able to reduce by about 1mg per month. I hit a plateau at 14 and yo-yoed for a bit but now on 13. This is amazing. I put it down to either the HCQ working as a DMARD (disease modifying drug) , or my PMR finally going into remission after 11 years or the HCQ working as a steroid sparer. There is no way of knowing, it could be any of the above or a combo. According to Dr Mackie no one has researched HCQ on PMR but maybe it's worth looking into, as unlike Methotrexate which I tried briefly but gave up due to horrendous side effects I have had no problem at all with HCQ, apart from perhaps reduced appetite, and lower blood sugars, side effects I can happily live with.
Anyone on Hydroxychloraquine (HCQ) for PMR? - PMRGCAuk
Anyone on Hydroxychloraquine (HCQ) for PMR?
"Dr Mackie no one has researched HCQ on PMR"
I think she is wrong - the work is possibly a bit dodgy but it is out there!!
pubmed.ncbi.nlm.nih.gov/278...
I think that's the one she knows about but doesn't rate Arthur Brawers's paper as it was a report (not proper trial) of giving HCQ without any Pred at all. He also said he thought it worked because they had RA all along rather than PMR. There was a French trial of HCQ in GCA but it failed to show benefit. There have never been any other trials of HCQ in PMR. Can't understand why not, it works for Sjogrens and I was made to try lots of other toxic DMARDS first like Leflunomide and Azathioprine and MTX.
Oh no - I think it is rubbish and I'm glad he wasn't my doctor!!! But there are rheumies who take it seriously and use it.
Personally, I'd say to anyone struggling on a high dose of Pred it's worth a try. All rheumies seem to push MTX but there is no evidence for that either, it's just what they're used to. I know Dr M is trying to do a trial on MTX, I don't know if it's started yet
I have had PMR since 2018. Saw Rheumatologist a year ago who put me on HCQ. Had really bad reaction…terrible sweating and nausea..we stopped after 4 weeks but the uncontrollable sweating has continued. My body thermostat seems to have permanently changed. I still can’t get below 8mg.
I was stuck at well above 10mg - at the start it took me 4 years to reliably get even slightly under 10mg and then had flares that sent me higher. Only Actemra has got me lower and even with it, 5mg got sticky because of adrenal laziness and a lot of stressful admin-stuff.
So what happens next, do you continue on TCZ/Actemra?
As far as I know. Now I have my new car, the tax is done and other joys out of the way, I'll go back to 5mg. I felt fine, just stress was a bit STRESSFUL 
So sorry to hear that it caused a reaction and on-going problems. If it were me, I wouldn't be worried about being stuck at 8, for the moment anyway. After the last 4 years I've had, I'd be happy with 10 or under. In fact I'm delighted to have got below 25 as I used to think there was no hope for me.
I am so glad to hear about your improvement and interested from my own point of view in HCQ as a possible steroid sparer, having tried all the others! I have very slowly got back down to 11mgs after my massive flare in November but am still struggling with mobility problems and pain. I will be seeing Rod Hughes in November so will ask him about that.
You and I have a lot of overlaps being long-timers and about the same age so you never know. ATM my PMR symptoms are totally under control at 12 mg, no hip or shoulder pain, and I can even do the 'scratch your own back test' I read about in Pangolyn43's post yesterday. It's all looking good and I'm daring to dream. The HCQ did take over 6 months to kick in but now seems to be working - though no way of knowing for sure it might just be luck or the PMR burning out.
Long May it continue whatever it is!
Hi, I’ve had HCQ for giant cell arteritis and PMR, I was on it for a few months and I thought it was marvellous. I then was seen by another specialist and he said I’m taking too many drugs and not to take it?
Words fail me, did s/he say why that one in particular? Presuably you are also on Pred for the GCA and PMR?
I’ve been taking pred since 2017, I’ve actually reduced now, I do have off days where I get headaches and shoulder pain but it’s mostly calmed down. I’ve no idea why one dr said take HCQ and one said to stop ?
Because it wasn't his idea at a guess. It would have made more sense to listen to the patient who felt great on it.
Don't be silly, doctors always know best
🤔
Hi Tangocharlie, I took hydroxychloroquine for about 2/3 years to help me reduce my pred. I managed to get off pred, I continued to take hydroxy for a year ( timing is sketchy) now off that too. I began PMR in 2016 and finally reduced pred to zero in 2022. I had several relapses during that time , hence the DMARD, we discussed methotrexate but this was disregarded as it can affect your lungs. I had taken sulphasalizine alongside pred for my ulcerative colitis, this gave me interstitial lung disease so the rheumy suggested hydroxy instead. I like to think that it helped. Good luck to you .
Very interesting to know, thank you
I appreciate this, I am finally down to 27.5 mg and so far *fingers crossed* I am ok whereas last time within 5 days the symptoms came back and badly - it's been 10 days now so I think this time I can stay here for the month or 2 (we'll see what my bloods in 2 weeks say). One never knows who will respond to what. Happy for you!
Glad to hear of your success. In fact, glad to hear from you at all - it's been a while, hasn't it? Ever thought of emigrating somewhere where they will prescribe TCZ for chronic PMR?
Ha ha yes but I'm reliant on disability benefits so stuck in this decaying country. Interesting question though, which countries do prescribe TCZ for PMR? I haven't been on here much this year really, but vow to spend more time both learning and helping people with the benefit of my long and checkered PMR history. Thanks for your good wishes, the same to you
A post on that subject would probably get lots of replies.
Or we could always start a campaign in this country!
Btw, my Spanish 'pupils' appreciated your story about 'no me moleste' and 'no me molesta'. Great for illustrating the subjunctive!
I think the charity ought to be fighting for it on our behalf as nobody else will, but it's a case of very small charity operating on a very limited budget. In the meantime I guess the drug companies and rheumies are doing their bit to influence NICE or whatever it takes to get a license. It is licensed for GCA but not PMR yet, maybe it needs more trials. PS I don't remember telling that story, it was distressing at the time but also made me laugh
It is unlikely to be approved in the UK as a PMR option purely because the clinical trials haven't been done. There is more likelihood for Kevzara which has been trialed in PMR and is FDA approved. The only possibility is if, now it is out of patent and biosimilars are appearing, that they approve it for individual cases if it is significantly cheaper like Humira is now. It was a similar price to TCZ and is now about 800 euros per year according to Christian. I would pay that myself, But the company isn't going to do clinical trials for PMR now they can't make money from it to cover their costs.
The USA - but that has its own problems with insurance. I get it for PMR with a bit of sleight of hand because of the long history and high pred dose plus a top rheumy who has used it in trials in PMR. France did a fairish sized trial but don't know if it is in general use. Not that it greatly bothers me at present but a return to the UK is not an option, I'd lose the Actemra and a really helpful form of prednisone that is also not available in the UK.
I had been on HCQ for about six years for other auto immune issues and then developed PMR this year. I don't think it has any part to play here.
Has it enabled you to take a lower dose of steroids?
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