PMR for 10 years

[Purplecrow]

I was diagnosed with PMR in Oct 2013. Instant pain relief from pred… and the journey began.

I have tapered down to 2 mg numerous times, but always end up back at 5-7.5 mg. To be honest, I don’t have serious issues with that dose of Pred, My weight is managed (although hard to lose), I don’t have blood sugar issues, vision is fine, etc.

About once a year, I decide to try another taper off the small dose of Pred, because, surely PMR has remitted! Well folks, it hasn’t!,

Last week I got my annual flu jab, and within2 days, I was rocking some wicked pain in my shoulders, hips, and wrists. ( This is not new, it happens every time I get a flu vaccine or Covid jab., and whenever I rock my little boat with outside stress, change medications, etc.)

Two days post flu jab, , I took 10 extra mg pred, and miraculously…..by night time, pain eased to my normal level., and over the next 3-4 days, I’ll drop back to 5 mg pred.

I recently met with a new rheumy, with whom I sense zero rapport. She looked at me skeptically when I said I had PMR, and after a5 minute exam, pronounced I have fibro. She did order a cortisol test, so I’ll get some info about adrenal function.

I wonder if any of you wise ones, you know who you are (👋🏽), think my vaccine reactions indicate continued PMR,. Is it likely I will need a wee dose of Pred to sustain me for my remaining days

Or….will I ever be able to stop the drug.? Just askin…

[DorsetLady PMRGCAuk volunteer]

Sounds very PMR ish to me, and we both know someone else who has had PMR a very long time… . Just because your new Rheumy may not know anyone in same situation or believe it is not PMR, doesn’t mean it isn’t.

Will you ever get off Pred?….maybe , maybe not… but it’s always worth trying occasionally. Does it really matter?…not if you can get to 2 or 3mg and have good quality of life.🌸

[PMRpro Ambassador]

Luckily my rheumy is far better informed! He is using Actemra but even with that he doesn't expect me to get under 5mg and to be honest, I was struggling at 5mg with some paperwork stress. That's after 14+ years of pred and 18+ of PMR. Absolutely no sign of anything else.

If you get relief from pred - IT AIN'T FIBRO. Don't care what she thinks - and I would be out of there.

[Purplecrow in reply to PMRpro]

my thots exactly!

[piglette]

If painkillers work and pred doesn’t it might be fibromyalgia. If pred works and painkillers don’t it is NOT fibromyalgia.

[Greensleeves]

I’m just like you , very similar story. I’ve had every blood test , i don’t even have raised inflammatory markers, but it’s PMR miraculously helped with steroids I don’t want to have to take.

I look back how I tried not to take them for 6 months at the start but I was crying with pain, they were like a miracle.

I’m not going down the steroid sparer path, I flare with vaccines like you . For this reason I stupidly didn’t have the Spring booster .

I can get by on 7.5 mg at present, but it’s been difficult with the vaccines and life stress as I’ve lost my mum . Prior to 2020 and catching covid the first time, I was comfortable at 2mg and 3mg .

I would continue as you are , noticing if other stressful factors are holding you back . As the wise one’s have said you wouldn’t get relief from fibromyalgia.

You’ll have to be on a very low dose to test adrenal function as you’ll know.

I’m going to try reducing again after I’m over this current Covid infection and the stress of Christmas is over . Plus there won’t be any vaccinations for a couple of months.

I’d be quite content to get to 5mg . The medics have to top it up massively if I’m unwell anyway, or I get adrenal crisis, so I think your rheumatologist is quite thoughtless.

I saw a super urologist who told me he’s got patients who’ve been on steroids for many many years. We have to find our lowest comfortable dose . You’ll probably get back down after Christmas. Don’t lose hope .

Take care x

[Purplecrow in reply to Greensleeves]

I think you’re correct, thanks🙏🏽

[Purplecrow in reply to Greensleeves]

Thank you, your words resonate with my messy thoughts.

[Greensleeves in reply to Purplecrow]

You’re welcome, follow your instincts and try not to even consider reducing until we’ve got Christmas over .

Have you got brain fog or feeling very stressed.

Take care xx

[Purplecrow in reply to Greensleeves]

I feel like I have a big pot of mush, and something for everything! It does seem to be getting better… but I just want it now!😡

[Greensleeves in reply to Purplecrow]

I understand, keep your chin up and keep plodding on xx