Shifting from Prednisone to Hydroxychloroquine

I’ve been taking hydroxychloroquine for 17 years and never had any reactions. I’m wondering if the dose is too strong. I also have PMR and the hydroxy did nothing for that pain. I’m on prednisone in addition to hydroxy.

My rheumy put me on Hydroxychloroquine with the Prednisone straight away and I've been taking it for three years now. I think it somehow helps with the Prednisone . However, I'm now down to 1 mg. Prednisone and hope to be off it by mid August.

Sounds like the combination worked for you - great! I think the result really varies person to person. My rheumy added hydroxychloroquine to my treatment with prednisone about 8 months into my first year of PMR. I had an immediate massive flare up and that was the end of that. I'm at 6+ years of PMR now but am down to 1.5 mg of prednisone and holding. I'm sure that part of the reason I've been on pred so long is because I have continued to work throughout my treatment. That makes it tougher to try any kind of faster reduction with prednisone. Patience has been required lol.

That's a lot of years. Good luck with getting off Prednisone.

I have had PMR for 30 years. Been on and off prednisone (P) for much of that time. Most recently I was on 5 mg P daily and Aleve 220 mg twice a day. Had to go off Aleve and went to 7.5 mg P. It didn't do the trick so went on 10 mg P. Now I am back on 7.5 P and hydroxychloroquine 200 mg twice a day. It seems to be working. I will reduce my P to 5 mg per day in a couple of weeks. I am surprised how well hydroxychloroquine is working. I will keep you posted. Will see my rheumatologist in August.

I just started hydroxychloroquine for my Erosive osteoarthritis of the hands. No side affects yet. Been prolonging taking it but in order for hands to slow down because they are a progressive EOA. Figured I give it a shot. Not a fan of any type of meds. But....

How did that work for him?

In reply to @jabrown0407 "When I received my first PMR diagnosis I refused steroids long term at any level due..." + (show)
jabrown, I hear you. I am also extremely med sensitive and do not want to even smell prednisone. I also do my research and am not happy with what I've seen re: Actemra, hydrox, Kevzara, Methotrexate, etc. I did see some research on the effectiveness of Doxyclycine, but I don't recall that the outcome was encouraging or I would have already engaged my rheum.
I started with symptoms in Jan and thought it was due to over-exertion of the thighs.
Right now, I await an ultrasound for April 30.....5 weeks. I am going to call the rheum tomorrow since she didn't even suggest testing my markers during this timespan, so I will have to do that myself.
May I ask what you've decided to take medication - wise, if anything? I'd be ever so interested in what you're doing for pain and mobility. I am concerned about inflammation and what, besides certain foods, can irritate or exacerbate it! Exercise? I can't find any good information about this *or* if just untreated inflammation from PMR can actually damage your heart, organs, etc.
Wondering if a researcher like yourself has found anything. I want to ask my doc but I have a feeling since she'll prob be pushing pred, she'll say yes. Plus, since I have untreated osteo, she's already told me, I have to have infusions at the same time as pred. No, I won't be around for that. At 75, youthful, but understanding that I've lived a loooong time, I wouldn't do that to my body and mine. Yea and kudos to all those who do. As you said, we're all different.
A million thanks for any feedback. And, of course, my best to you.

@glinda47 first let me tell you that I am alergic to non-steroidal anti-inflammatories so Tylenol has been my mainstay of OTC's available to me. Believe it or not after 4+ years of using Tylenol (2000-3000mg/day), I developed a sensativity (very rare) to it, so I ration myself to 1000mg/day max but try to keep it to under 500.
After 4+ years I gave in to taking Prednisone following a Covid infection that drove my CRP to as high as it was previously - 130-150. I took 10mg per day for 2 months, then 7.5 for 1 month, then 5 for a month - then I defined my own stepping down program from 5 because I did not want to be at each level for a month. My Rheumy was not happy with it - but it worked for me.
Interesting that you mentioned Doxy, my PCP when I first had symptoms Rx-ed me Doxy and it made me feel a lot better but once I was off it the pain returned rapidly. No other doctor would even consider antibiotics for my symptoms. Believe me I asked many doctors for them - and the docs all thought I was a little crazy. I gave up refined sugar two years ago - don't really miss it. I just celebrated my 80th birthday - I tell people the first 75 were great, the last 5 not so much!
What else can I share that would help? I'm willing to answer any questions, etc - just ask.

ja -first let me thank you for your kind and caring response. I can tell you are a rare breed. Something special and gracious about you.
I'm impressed with the decency and humanity of the people in this group and their professional attitudes inspire trust. Not so much on other threads I've found. I think this is much more of the real deal, if you will.
Your response was very helpful and hopeful to me. I would like to ask if the Tylenol helped as much as the pred. Would you have stayed on it if not for the covid and inflammation markers being so high?
Yes, I read about the Doxy in a study that I felt was reliable. Something I will bring up to my rheum. It's too bad the docs aren't as well-informed as they should be. I'd love to find someone who would work with me. Interesting that a PCP suggested the doxy for you. Must be pretty well-informed person, or at least, interested in alternative ways to treat pmr.
Did the pred cause osteoporosis? Are you taking osteo meds? I already have osteo and elected no meds so far, but the rheumy said the practice won't allow patients with osteo to take steroids without osteo meds. Whew. Makes sense tho as pred chews up the bones. She's been on my case about osteo meds as has every endoc and rheum before her.
How are you doing since being off pred or are you still on a small dose?
Happy 80 years to you and hope the next many years are pain free and glorious.
Take good care and once again, thank you for your gracious help and openness.