GCA (Giant Cell Arteritis) and PMR (polymyalgia rheumatica)

I ordered some quinine off ebay for muscle cramping. It's related to Hydroxychloroquine, (Plaquenil) and it's an old treatment for cramping. Tonic water does too but it's sugary and I don't use artificial sweeteners.
I dropped half my Plaquenil yesterday and noticed a leg cramp. Some rheumatologists prescribe Plaquenil for PMR as it is "steroid sparing".

My concern too. I already have an eye problem, and 13 years ago I developed a rare voice condition where I cannot talk, just whisper. It's what RFK Jr has, laryngeal dystonia. So if I lose my vison too, not being good at typing, I will not be able to communicate with our 5 kids and 15 grands!
SO tapering causes pain and I am not ready for more than 1mg/month taper.

I would like to know if anyone has info regarding people who have long remission from gca and pmr. It seems like I can't find anyone who has accomplished this. For having to go thru years of Prednisone i would hope that once in remission it would stay that way. I know there is no current cure for these diseases but it seems like relapses happen often with only a short remission period. I'm trying to stay positive and hopeful

I haven't had GCA but have had 2 occurrences of PMR. First time took 3 and half years to get off of prednisone and I was in remission for 6 years before the PMR came back. The second time I was able to taper off in 1 and half years which I think was more about making additional lifestyle changes that I didn't do my first time around with PMR. I've been in remission from the second time around since the fall of 2018 so guess I'm pushing a little over 4 years now being off of prednisone. I guess time will tell 🙂

That is fascinating. Thank you for the insight. My MD has not suggested anything out of the prednisone or other icky rheumatoid type drugs, biológica.

I enjoyed a thirteen year remission after my first occurrence of PMR. The symptoms returned after a Covid vaccination in 2021. I am now in remission again and have been for over a year.

What lifestyles did you change? I'm starting to learn more about an anti-inflammatory diet and will try to get up to speed on that. It certainly appears that these diseases come back frequently unfortunantely.

That's a good long time and encouraging at least. How long were you on prednisone? Is there any lifestyle changes you made that would be worth sharing

The biggest things I did for lifestyle changes was to eat healthier and exercise more. As part of the eating healthier, I gave up all fast foods and worked on greatly reducing my sugar intake. The past two years or so, I've been working on reducing carbs and intermittent fasting which has helped me lose 40+ pounds and maintain the weight loss and hopefully get me out of the pre-diabetic category. There is another discussion you might want to read through if you are looking to make some changes.

--- Low-carb healthy fat living. Intermittent fasting. What’s your why?: https://connect.mayoclinic.org/discussion/low-carb-healthy-fat-living-intermittent-fasting-whats-your-why/

During my first bout with PMR, I did not see any doctors who knew how to treat PMR and only received prednisone on a sporadic basis; a pack of medrol now and then when I complained. When the symptoms returned, it took me several months to finally see a rheumatologist who prescribed 15 mgs. which relieved my symptoms almost instantly. I began to decrease in two weeks after starting the prednisone and was able to taper off in three months, as the doctor prescribed. Both bouts lasted about the same amount of time: eight or nine months total, less than a year. I'm hoping it won't come back. The rheumatologist advised against strenuous exercise, and especially stair climbing, to avoid another relapse.