Advice when bloods stay normal for ESR and CRP bu... - PMRGCAuk

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Advice when bloods stay normal for ESR and CRP but shoulder stiffness and pain are increasing little by little

Dochaz profile image
16 Replies

Although my ESR and CRP today are within normal range (21 & 6.8 respectively) I have had a return of stiffness and pain in my shoulders and neck over the last few days. I've just tapered from 7mg of Prednisone to 6.5 mg. This is my 14th day on 6.5 mg. Tried Paracetamol, but it doesn't seem to be working.Is it a flare? I think it probably is. So what should I do next. Increase back to 10 mg for a few days and then return to 6.5 mg? Or go back to 10 mg (where I felt ok) and taper as before by small increments?

All advice welcome. I'm reluctant to up my dose, but it seems that 6.5 mg just isn't getting on top of the inflammation.

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Dochaz
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16 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Usual advice for a flare contained in this link -

healthunlocked.com/pmrgcauk...

but come back down to 7mg not 6.5mg. and maybe no more reducing for a while...and then a slower taper maybe - adrenals need to to start thinking about functioning again, so slower the better for them as well.

Blood markers very often lag behind symptoms, so go by symptoms every time...

Dochaz profile image
Dochaz in reply toDorsetLady

Thank you for the quick reply and the link. I'm going to to go back to 10 mg. As I have already taken 6.5 today, should I take another 5mg pill now or wait until tomorrow to take two 5 mg pills?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toDochaz

Take it now..sooner in your system, sooner it works...😊

Dochaz profile image
Dochaz in reply toDorsetLady

🙏 Done!

singingloud profile image
singingloud

You may have reached your dose at 7. You may have to stay there for an extended time before going down by .5 mg using the dead slow method.

I’m reaching my spot where I flared going from 8-7.5mg. I’m at 9-9.5 but I’m facing some big stress with my 89 year old mom and moving her to an assisted living facility in the months ahead.

Don’t rush take your time. Follow the advice given above and you will do well. We are here for you.

PMRpro profile image
PMRproAmbassador

You are looking for the lowest effective dose, the lowest dose that works as well as the starting dose did. Sounds as if you have found it for now: 7mg.

What is the lowest your markers have been? That is your guide. Normal range isn't a range that applies to a single person. It is the range of readings that include 95% of a very large population. My normal ESR is about 4, when my ESR was running at 16-18 over a period of weeks it matched the symptoms I had but it was perceived by the doctors as "in normal range" so OK, not that it was raised for me. Symptoms always trump lab results.

Dochaz profile image
Dochaz in reply toPMRpro

I can't help feeling that this is in some way my "failure"... stupid, I know, but I was so hopeful to taper with no hiccups. Just a momentary mood swing. Hopefully I'll get back on track within a few weeks.

PMRpro profile image
PMRproAmbassador in reply toDochaz

Not your failure at all - you aren't in charge, you can't control anything, the PMR/LVV is in charge. You start with a high dose and then titrate the dose by a slow taper to find the right dose for YOU AT THIS TIME. It is very very rare for anyone to taper without any hiccups. DL did - but over a period of 5 years!

I just realised you say you felt OK at 10mg - does that mean you have actually NOT felt OK since? There is no way that you are over it in barely a year, and LVV/GCA needs a higher dose than PMR.

Dochaz profile image
Dochaz in reply toPMRpro

Only twinges until a couple of days ago. But today I had to accept that the inflammation was back. It hurts to raise my arms, although I can, just uncomfortable. But I can climb stairs easily (which hurt before dx). Following DL's advice, I have taken an extra 5 mg (on top of the 6.5 mg this morning) and will take 10 mg from tomorrow until I feel better.

Dochaz profile image
Dochaz in reply toPMRpro

@PMRpro, I took your advice and looked up my blood tests to see where the upward trend in inflammatory markers started... I was at my lowest when on 11 mg. So, now 2 days back on 11 mg, I already feel much better 😊I'm sticking here for at least 5 days and will then apply the rules set out by DL.

Very many thanks for the support provided by you, DL and other fellow patients ❤️

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toDochaz

Just make sure 5days is long enough -I usually suggest 7-10 days

Dochaz profile image
Dochaz in reply toDorsetLady

OK, 7 sounds like a good plan. Though I just saw the @jinsac post about reducing at times of stress and think maybe I should stay on 11 mg until the commotion of Christmas is over. We are going to my OH's son's, so no awful stress involved, but still, getting the neighbours to look after the cat, travelling (4 hours drive), meeting new people (the girlfriend's family)... not exactly major stress, but an upset to our usual routine. I'll bring enough Pred to cover all eventualities 🤣

PMRpro profile image
PMRproAmbassador in reply toDochaz

I think that is a very good idea! There are rheumies who discourage reducing during the winter!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toDochaz

Agreed - no reducing for now. And although Christmas and holidays may not be stressful in the way we usually talk about -it is a change to your normal routine and that may stress your illness -if not you per se!

Karendeena profile image
Karendeena

Hi there, this happened to me when I tapered, my Rheumatologist told me that my ESR went from 11 to 17 then 27 and my CRP was 5 he said these were abnormal so increased pred, disappointed but looks like you are on a similar trajectory 😥

Dochaz profile image
Dochaz in reply toKarendeena

Yes, it is disappointing ☹️. Lucky we have the people on this forum and know we're not alone!

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