Hydroxychloroquine (Plaquenil)

[msdale]

Hi everyone. Have been reading this forum for a few years, diagnosed with PMR in 2019. Started on 10 mg prednisone at that time and have slowly, with fits and starts, flares, etc. reduced to 1.5 mg. However, am very uncomfortable now and going to up the dose to 2 mg to feel better, then try to reduce again once the pain is under control.

My rheumatologist has been wanting me to go on hydroxychloroquine (Plaquenil) to see if that will help me get off the Prednisone. She says that there is no safe dose of Prednisone. I am in the U.S., so not sure if this is something doctors over here are trying.

I have put off starting the hydroxychloroquine because the side effects look very bad - rheumatologist says side effects are less than the pred, but I just have an aversion to taking any new drugs, especially when I don't know that it will help, and neither does the doctor. Afraid she is going to cut me off of the prednisone at some point, although she has never said that.

Does anyone have experience with hydroxychloroquine, as far as PMR symptoms and using it to come off of prednisone? I really haven't found much information about it, though have searched.

Thanks to you all for being there!

[PMRpro Ambassador]

There is one person on the forum who has done well on HCQ. That is the only person I have come across in 12 years.

There has been recent work published that claims there is no safe dose of pred - but there are also side effects from everything, I'd take my chances with 2mg pred that works rather than something else that doesn't. HCQ can be bad for eyes.

[msdale in reply to PMRpro]

Thank you very much. That's how I feel about it, too (take my chances with 2 mg pred that works, rather than try something that also could have bad side effects). I guess I just needed some reassurance. I appreciate your quick reply!

[PMRpro Ambassador in reply to msdale]

Sorry, what an idiot, me - HCQ not pred! Too early in the morning!

Prof Dasgupta told us a couple of years ago that he often kept patients on 2-3mg longer term to prevent relapses. If that means not going back to a much higher dose to sort one out surely that very low dose is preferable? All drugs have some adverse effects when used long term - including NSAIDs which we can buy OTC and take without supervision. It is accepted that cumulative dose is significant - but there is no proof anything else works reliably in PMR - if they did, they would use them instead from the outset. They don't - especially HCQ - and even methotrexate is acknowledged by top experts in the field to only work for a small population of patients. But even it rarely replaces pred altogether - the best you can hope for is a a couple of mg reduction in dose.

But I do wish that they would come to a consensus about how to go about it instead of everyone you see having a totally different opinion - which really rarely coincides with the patient experience.

[msdale in reply to PMRpro]

Yes, I smiled when I saw the 'pred' but knew what you meant to say. Thank you for the further input. I don't even like taking Ibuprofen, Tylenol, etc. because as you say, all drugs have some adverse effects. What I especially don't like about the HCQ is that per my doctor, I'd have to take it (while still taking and trying to taper pred) - for weeks, maybe even a few months while it builds up in my system - before we even know if it will do anything, etc. Then, per my own research, it takes a long time to get out of one's system. Yikes!

I read somewhere (probably on this forum) that PMR is a 'do-it-yourself- disease - and exasperatingly, that seems to be true.

I took 3 mg this morning to get the current flare under control, then will slowly go back down, at a rate of .25 (I can cut my 1 mg tablets in fourths), but at an even slower rate this time. And just hope I can talk the rheumatologist into giving me more time to taper, and that she'll renew my pred prescription. The thought of the HCQ scares me more than taking Prednisone. Whether that fear is justified, I don't know, but I know I don't want to add another drug to the mix when I've come so far!

Thank you again for your insight. It is very helpful and encouraging. Otherwise, a lot of us would feel quite alone!

[Pmrmolly2018]

I have had PMR since June 2018. Difficulty with going below 10mg pred. Saw rheumatologist privately last year. He prescribed hydroxychloroquine which I took for two months..it was terrible, I felt very ill; tired with severe migraines and continual head sweating…this has still not gone away. After two more ‘very unsatisfactory visits’, gave up ; he did not like me to question!

With my GPs approval and kind support, I am very slowly decreasing pred, now 8mg and down half mg every 2/3 months. No panic or pressure just encouragement. My body is stiff and still uncomfortable BUT I can manage a quality of life. I also take Amitriptyline for chronic neuropathy in my feet.

[PMRpro Ambassador in reply to Pmrmolly2018]

"No panic or pressure just encouragement"

Which is how it should be - far more successful.

[msdale in reply to PMRpro]

Yes, most definitely!

[msdale in reply to Pmrmolly2018]

Thank you for sharing your experience - sorry to hear it was so bad! I am prone to migraines anyway, so this is of particular interest that you had that reaction. I am going to stay away from the hydroxychloroquine. I just have a bad feeling about it and going to go with my instincts. And good for you on getting down to 8 mg. I got stuck at 7 but eventually managed to get down. What a process this is!

[IslandShell]

Hi .... I have had PMR for about 9 years now. Pred for me is a dance between 4-1 mgs. At one time a Rheumatologist had me try Hydroxychloroquine for about a year. For me it did not help at all with getting to 0 pred. Take care.

[msdale in reply to IslandShell]

Thank you. Really appreciate your input. Yes, a dance between 1 and 3 for me, apparently.