Flare?: I have tapered to 6.5 mg over 3 years. I... - PMRGCAuk

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Flare?

PUMC profile image
PUMC
17 Replies

I have tapered to 6.5 mg over 3 years. I recently had two falls (fainted) and now my CRP is 13.9 and my Sed rate is 50. I don’t feel awful, but I am now very stiff in the morning, and have little energy or strength all day. Of course I got these blood results on a Friday, and won’t hear from my doctor until Monday. In August, my CRP was <1 and my Sed rate was 8. I’m guessing this is a flare? I’m having difficulty finding the link to how to treat a flare. I appreciate your help.

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PUMC
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17 Replies
piglette profile image
piglette

I started fainting below 7mg. I think it must have been my adrenals. I had lots of tests for heart problems, but they did not find anything so gave up.

PUMC profile image
PUMC in reply to piglette

I had a brain MRI, normal. Echocardiogram, normal. Just very depressed about my CRP and ESR. They’re as high as when I was first diagnosed. Do you think I should take a higher dose of prednisone for a while?

PUMC profile image
PUMC in reply to piglette

Have you stopped fainting?

piglette profile image
piglette in reply to PUMC

I sometimes feel faint, but I have not fainted for a while now. My CRP and ESR are always high. The highest was when my ESR went up to 415. My GP now says it is just me. Currently my ESR is in the 50s and my CRP in the 30s.

PUMC profile image
PUMC in reply to piglette

How do you feel? Are you still taking prednisone? Is your PMR “active”?

piglette profile image
piglette in reply to PUMC

I feel OK but I tend to be careful. Yes and yes

SnazzyD profile image
SnazzyD

Hello, when was your last fall? What had you been doing? Could the bumps from that be contributing to your inflammatory markers for instance? Poor adrenal function can cause dizziness and one of the features is the blood pressure dropping when you stand. One of the checks they do if they think someone is in trouble with their adrenals is a sitting and standing bp.

PUMC profile image
PUMC in reply to SnazzyD

My fainting spells (2 within minutes of each other) were Nov 11. I was on 7 mg at the time. You’re right, my blood pressure plummeted (77/51 in the ambulance). In the hospital (where I was evaluated for 3 days) I asked for 5 extra milligrams of prednisone, but was denied. I took an extra 5 for 3 days when I got home - probably should have done that longer. The strange thing is that Tylenol DOES make me feel better…….so I wonder if it’s adrenals stuttering. Does low cortisol cause inflammation markers to go up? My symptoms are just feeling weak, tired, a sort of all over achy feeling.

SnazzyD profile image
SnazzyD in reply to PUMC

This level of Pred I found the hardest because it was too low for the adrenals to be asleep and a bit too high for them to get the message to work properly. The only way to get through it was take life very easy and keep reducing very slowly. BUT it does sound like you also have a flare revving up as suggested. Paracetamol doesn’t help poor adrenal function and increasing markers isn’t a sign of poor adrenal function either. If you increase your dose above 7/8mg and feel much better it could have been either. Tricky isn’t it?

PMRpro profile image
PMRproAmbassador

Since you have symptoms as well as the raised markers I'd be inclined to think this is a flare due to having overshot the dose you need.

The usual advice for a flare of this sort is to add 5mg to the dose where you flared for 7 to 10 days and then drop back to the dose where you were last OK. The articles about it will be in the FAQs - DorsetLady has them on speed-dial!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

here’s the link - as said by PMR on speed dial 😊-

healthunlocked.com/pmrgcauk...

PUMC profile image
PUMC in reply to DorsetLady

Thank you. I guess I don’t know how to find “links.”

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PUMC

PMRpro meant that as it's one of my posts - I have it on speed dial on my devices... so you wouldn't find it! ..unless my security is useless...😲😲

But many of them are under the FAQs post which you can find...

PMRpro profile image
PMRproAmbassador in reply to PUMC

And once you have a link - you can save it.

Sometimes I get links from here more quickly using a google search than an HU one!! But they have to be a bit specific.

PUMC profile image
PUMC in reply to PMRpro

I have saved (and memorized) this information now. Thank you! My quandary is that Tylenol does seem to help, so maybe it’s my adrenals sputtering . My symptoms are weakness, fatigue, and an all over achy feeling.

I was so happy to get over the back pain and leg pain from the fall (11/11), that I went ahead and reduced prednisone by 1/2 mg 12/1. I’ve just felt progressively worse every day…..thought by now I would have adjusted. Adrenals or flare…….such a hard decision. I also think I read on this site that yo-yoing the dose of prednisone isn’t good either. I have increased my dose twice this year with 2 cases of COVID. Decisions, decisions………

PMRpro profile image
PMRproAmbassador in reply to PUMC

Three weeks is soon after a fall to think you are recovered. Increasing pain/symptoms is more likely a flare, adrenals should be the same or improve.

PUMC profile image
PUMC in reply to PMRpro

Thanks for your insight.

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