Treating PMR with Prednisone and Hydroxychloroquine

Hello @loresathome. I combined your discussion with an existing discussion titled, "Treating PMR with Prednisone and Hydrochloroquine" - https://connect.mayoclinic.org/discussion/treating-pmr-with-prednisone-and-hydroxychloroquine/.

@ncgal, @jfannarbor, and @mijaka011 have shared their experiences with using hydrochloroquine in addition to prednisone for PMR. It is great to hear you are doing well with your new treatment. Have you been successful then in tapering your prednisone?

I want to post my most recent experience with hydroxycholoquine (H) to reduce my prednisone (P) use. I have posted before on this subject, but here is more information and there is one question that I have that I would like any input on. A brief review. I have been on and off P for about 30 years due to PMR. When I was diagnosed 30 years ago, I had never heard of PMR, yet when I went to well respected and education rheumatologist I recited the symptoms of PMR as if I read it from a text book. basically pain for no reason in my shoulder girdle and hip girdle and fatigue. Based on my history the MD Rx P and withing 6 hours I was a new man. I was able to reduce P to zero, but about a year later I got PMR symptoms again. I know the symptoms very well and every time P immediately solved my problem. For reasons other than PMR I had to increase my P to 10mg and my rheumatologist wanted to reduce P and started H 200 mg 2X/d. Due to sleep problems I reduced H to 200 mg in the morning. and have reduced P from 10 to 7.5 to 5 and now 4 mg. I have reduced P from 10 to 0 mg maybe 15 times, but never so easily. Often in the past I would have to up my P since when I reduced it I started to have PMR pain again. Now my question: I am wondering since it is so easy to reduce P am I in remission? My rheumatologist told me that PMR usually lasts 2 years. Yes, I know I told you I have had it for 30 years. Do 78 yo go into remission? In the past 30 years I have see 5 rheumatologist and 2 of them question if I have PMR even though P has always been the magic bullet, that is immediate relief.

I’ve been on hydroxychloroquine for 15 years for Antiphospholipid syndrome and I really believe it does boost the prednisone. With my PMR diagnosis in March, I noticed an immediately drop in pain level on day two with methylprednisolone. Although I still have other issues with PMR, the pain is not as severe.

PMR seems like it is very hard to diagnose. I'm not sure where you are located, but have you tried getting an appointment with a well known hospital, like Mayo Clinic, University of Pennsylvania Hospital (UPenn - Perelman Center), etc.? I just had my appointment at UPenn. It did take 6 1/2 months to get one at the time, however, it seems other people have gotten an appointment within 2 weeks. The doctor I had was wonderful, and very open minded. He is exploring every possibility with my symptoms and sending me to different departments within the hospital, further extensive testing, recommended aqua therapy, etc. He was probably one of the best doctors I have been to and also has access to explore various options.

Well, my second occurrence of PMR went into remission about 5+ years ago and I'm now 80 years old hoping it never comes back. I was on prednisone for 18 months for the second occurrence and that started after 6 years of being in remission. My first time with PMR took 3 and half years to taper off of prednisone. I think I did much better the second time around because I learned more about the condition and what I could do to live a better lifestyle to help manage the PMR.

@johnbishop and all...John, have you ever taken Hydroxychloroquine with Prednisone for the PMR? Taken Hydroxychloroquine for anything? I wanted to take it for Covid but my primary doctor wasn't willing to give it to me due to his hospital's attitude re using it for Covid and the politics involved. I wanted to take it 3 years ago!

How is it supposed to help with PMR? Is it like using it for Lupus? Autoimmune disease...I see my Mayo rheumatologist on Tuesday and will discuss this with him. I don't want to stay on Prednisone any longer than necessary but so far haven't been able to reduce it without increasing my PMR symptoms. Add to that I'm dealing with my 2nd Covid infection in 6 months and I'm ready to get this thing started if it'll help...and I do believe it will!!! I think it would have helped with Covid !!!! I'm going to ask a lot of questions and I'll let you know what he says...

Feel well my friend and be blessed...Elizabeth

I started 3 1/2 yrs ago on prednisone…after several years of no success reducing pain and getting off it Sulfasalazine and hydroxychloroquine were added …after 18 months of no consistent improvement..Actemra has been added …I think now thing are actually getting better …I’ve only been on the Actemra for a month and I’m able to sleep much better as I have less pain in joints and can almost walk normally …also feel much less like I have flu all the time …hope to drop prednisone very soon as down to 1 mg daily now…

@johnbishop and all...John, have you ever taken Hydroxychloroquine with Prednisone for the PMR? Taken Hydroxychloroquine for anything? I wanted to take it for Covid but my primary doctor wasn't willing to give it to me due to his hospital's attitude re using it for Covid and the politics involved. I wanted to take it 3 years ago!

How is it supposed to help with PMR? Is it like using it for Lupus? Autoimmune disease...I see my Mayo rheumatologist on Tuesday and will discuss this with him. I don't want to stay on Prednisone any longer than necessary but so far haven't been able to reduce it without increasing my PMR symptoms. Add to that I'm dealing with my 2nd Covid infection in 6 months and I'm ready to get this thing started if it'll help...and I do believe it will!!! I think it would have helped with Covid !!!! I'm going to ask a lot of questions and I'll let you know what he says...

Feel well my friend and be blessed...Elizabeth