Cautious Optimism

[MikeVanBC]

Update: using very slow reductions of ¼ mg per week while taking 100mg of hydroxychloroquine I was able to stop prednisone on June 15, 2024 after 2 years and 3 months with PMR. I continue to take this low dose of hydroxy intermittently several days a week.

So far all is well. It’s a far cry from starting out in massive PMR pain that initially left me essentially bed-ridden until discovering the wonders of 20mg + of prednisone!

I’m now able to hike 5 or more miles many days over hilly terrain without pain. I presume my adrenals are working reasonably well given the very slow pred reductions without incidence. I have a Covid booster booked at the end of July and only pray that will not trigger any PMR symptoms.

The advice and camaraderie with folks on this forum has been invaluable. I thank you all. Special thanks to PMRPro & Dorset Lady for your thorough knowledge and tireless dedication, and to many others who you have inspired by example. Hugs & well-wishes to all.

[DorsetLady PMRGCAuk volunteer]

Good to hear… long may it continue… and thank you.

[Longtimer]

Wonder story! Keep well!

[suzy1959]

I am very interested to hear about Hydroxychloroquine as I am considering trying it as a possible steroid sparer. Were you on it from the beginning and did you have any side effects? Is anyone else taking it?

[MikeVanBC in reply to suzy1959]

Hi Suzy,

I ignored my rheumatologist when she first prescribed Hydroxy, but after I could not get much below 6 mg of prednisone began taking half the recommended dose daily.

I don't know if that was a contributing factor but I was able to taper slowly thereafter. I noticed no side effects and had 2 of the detailed eye exams, both of which were fine. Apparently at even 200 mg of Hydroxy there are seldom ocular effects.

[cranberryt in reply to suzy1959]

I took it for 2 months several years ago and although it was promising, my liver bloodwork went through the roof and I had to stop taking it. Make sure you are getting regular bloodwork, eye exams and get a chest xray before beginning it.

[PMRCanada]

Your story is an inspiration and gives us hope!

[Tescohednesford]

Hi, what wonderful news!I do hope you manage to stay free of PMR...very jealous.

Good Luck!!

[PMRpro Ambassador]

That's great - and give Vancouver Island a hug from me - I got a memory on FB about our 2 day trip there 8 years ago!

[MikeVanBC in reply to PMRpro]

Will do as best I can, given my arms stretch nowhere near that wide 🤣