Flare or withdrawal: Diagnosed with PMR July, 201... - PMRGCAuk

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Flare or withdrawal

Summerrental profile image
12 Replies

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?

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Summerrental profile image
Summerrental
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PMRpro profile image
PMRproAmbassador

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 profile image
Summerrental in reply toPMRpro

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 profile image
PMRproAmbassador in reply toSummerrental

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 profile image
Summerrental in reply toPMRpro

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 profile image
PMRproAmbassador in reply toSummerrental

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 profile image
Summerrental in reply toPMRpro

I had the Pfizer

Purplecrow profile image
Purplecrow in reply toSummerrental

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 profile image
Summerrental in reply toPurplecrow

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

PMRpro profile image
PMRproAmbassador in reply toPurplecrow

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 profile image
Purplecrow in reply toPMRpro

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 profile image
DorsetLadyPMRGCAuk volunteer

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

Might help you decide.

Purplecrow profile image
Purplecrow in reply toDorsetLady

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

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