Flare or withdrawal

[Summerrental]

Diagnosed with PMR July, 2018. I have been on 14 mg. of Prednisone for about 2 weeks now. Had a terrible night last night. Pain in every part of my body. Should I raise pred. by 5 mg & then try going back down to 14?

[PMRpro Ambassador]

Difficult to say whether it could be a flare or withdrawal without a lot more information. To still be at 14mg and reducing after nearly 3 years isn't common.

[Summerrental in reply to PMRpro]

I had to raise pred to 10 mg after first Covid shot & then to 14 after second shot. I had gotten down to 7 mg. at at one point, but it seems to have gotten more difficult to reduce.

[PMRpro Ambassador in reply to Summerrental]

Oh right - yes, understandable. When you raised the pred each time did it improve the PMR flare symptoms? I've also had an apparent flare since the second jab but I haven't gone up on the dose of pred really - just waited it out and it is improving.

I can't see any reason for it to be withdrawal though - that tends to happen if you are reducing in too large steps or if you are down to the sort of doses where adrenal function is a feature, i.e. below about 8mg. It is also not uncommon for it to become harder to reduce the dose after increasing it like that.

[Summerrental in reply to PMRpro]

I waited it out at 14 mg for 2 weeks, but last night the pain was excruciating. Barely able to walk today. Should I stay at 14 or up the pred?

[PMRpro Ambassador in reply to Summerrental]

We can't tell you that - but are you sure this is a flare and not something else? It isn't always a PMR flare - which is why I asked if it worked the first time? Which jab did you have?

[Summerrental in reply to PMRpro]

I had the Pfizer

[Purplecrow in reply to Summerrental]

I had similar experience with Covid shot. (Also Pfizer). About a week after second injection, my system just went wild. Severe pain, everywhere...I raised my pred from 6.5 mg to 26.5. Took that dose 3 days, then tapered quickly to 10 mg. It's been 2 months and I'm still struggling with fatigue , pain, and other PMR symptoms. My rheumy supported my actions and said this is not unusual with Covid shots in PMR people.As of today, I'm at 8.5 mg pred,

I still have shoulder pain, but hope it will get better soon.

[Summerrental in reply to Purplecrow]

Thank you for your reply, so glad you are doing better & have been able to reduce the pred. It gives me hope.

[PMRpro Ambassador in reply to Purplecrow]

Does s/he know of any data? I had the Moderna jab - first, nothing but a sore arm. Second, the fatigue is awful still (jab Easter Monday) and although I haven't raised the dose above 15mg I can feel the stiffness after sitting but don't want to go further,

[Purplecrow in reply to PMRpro]

doubtful she has any data. I don't get sense she is particularly curious...when I finally got in to see her, much of my drama was past..., and she just adjusted my script to cover additional number of pills.

[DorsetLady PMRGCAuk volunteer]

Have you read this - healthunlocked.com/pmrgcauk...

Might help you decide.

[Purplecrow in reply to DorsetLady]

Hi DL, thanks for the reference. I have read that material, and do know what it says. When my Covid reaction happened, I was in my r.v., about 500 miles from home, and had no internet, phone, etc. I think I was panicked by the ferocity of my flare, and 20 extra pred seemed reasonable response.

In retrospect, it is likely the physically long trip/ride, contributed to the issue.

I'm better now, ready to drop to 8 mg.

Cheers, j