Flare length?: I seem to be experiencing what I... - PMRGCAuk

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Flare length?

Southmead profile image
20 Replies

I seem to be experiencing what I assume is a flare, currently I'm sticking to the 5mg Pred a day, but this flare? Had been going on for weeks now, perhaps months. I'm experiencing the fatigue and morning brain fog. Recently i had a sinus infection which may have triggered the flare?

Should I increase the Pred, even double it to 10mg to find out if indeed this is PMR flare or something else? As always I go to this site for advice, I'm not expecting a diagnosis, based everyones experience what does the team think?

Thank You

P

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Southmead profile image
Southmead
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20 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

As you’re at 5mg it might be a flare, it might be adrenals stuttering or combination of both.

Would say it’s more likely adrenals especially as you are recovering from a sinus -which would have put them under extra stress.

However, if it’s a flare (and that may also be a result of your sinus infection) there’s no point in sitting it out and hoping it will go away - it won’t!

So maybe treat as such -see this link -

healthunlocked.com/pmrgcauk...

but also be aware that your adrenals will still take some time to fully recover (even after finishing Pred) so maybe have a look at this info -

healthunlocked.com/pmrgcauk...

Southmead profile image
Southmead in reply to DorsetLady

Thank You, the link is very helpful..

PMRpro profile image
PMRproAmbassador

Why do you assume it is a flare?

The reason for a flare in PMR symptoms is because you are no longer on enough pred to deal with the daily new batch of inflammation. If you aren't on quite enough pred, there will be a bit of inflammation left over each day and, in the same way a dripping tap will fill up a bucket, the inflammation will build up over time so the symptoms will return at some point, If you ignore that, you can end up back where you started before ever taking pred. The mark of a flare is that it worsens over time - is that what happened?

But first all you say it has been going on weeks, possibly months, and then you say that you recently had a sinus infection that may have triggered it. It can't be both - unless it was already a flare and the sinus infection has made it worse?

Southmead profile image
Southmead in reply to PMRpro

I suppose I'm trying to understand what it is, to me with PMR anytime you get the fatigue, etc I always assume it's PMR related, and I wouldn't say it's got much worse, but it hasn't gotten any better either. As you and Dorset Lady pointed out it's obviously no use in toughing it out in the hope it will go away. You have both given me great advice, as usual. I thank you both profoundly..

PMRpro profile image
PMRproAmbassador in reply to Southmead

Well, I suppose you need to consider which it is because if it is due to laggardly adrenal function, only remaining at a slightly too low dose for THEM will wake them up. On the other hand, too low a dose for the PMR will let in a flare. It can be a tricky balance.

Southmead profile image
Southmead in reply to PMRpro

It would seem it's the adrenals not doing the job, I doubled pred from 5mg to 10mg and feel better already. I will go on the flare linke that DL advised, see how that goes. You said, a tricky balance is what it is. Thank you again!

PMRpro profile image
PMRproAmbassador in reply to Southmead

And whatever else - we have to live our lives. QOL is the most important factor in my view - pred or not.

Southmead profile image
Southmead in reply to PMRpro

Well said!!

howtotaperdown profile image
howtotaperdown

My French GP gave me an on-going prescription to do a ESR - Sed rate test - as I am in a similar position, not sure if it is tapering/withdrawal pred symptoms or a flare.. so he told me to try to continue tapering but do the test if in doubt and compare ESR rate with a fairly recent normal one.... so I did ESR had gone up and also a urine infection confirmed - so treating it as a flare till it has calmed down.. then hope to continue tapering

so is it worth asking for a ESR or other blood test to help decide?

PMRpro profile image
PMRproAmbassador in reply to howtotaperdown

The UTI itself could have been the reason for both the raised ESR and the feeling symptoms of PMR. All sorts of things will raise the ESR. The correct preocedure is not to raise pred for a raised ESR without symptoms - you repeat the ESR a week or two later and see if there is a rising trend.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to howtotaperdown

see this re -withdrawal symptoms v flare -

healthunlocked.com/pmrgcauk...

Polygolfer profile image
Polygolfer

I was explained that withdrawal symptoms can be similar to flares, or mistaken for other things… a simple test, that avoids messing with an increase in Steroids would be to try over the counter pain killers, along with daily stretches and joint mobility exercises. If things improve, good on you, if not you may need to revisit your tapering with your doctor. Good luck!

howtotaperdown profile image
howtotaperdown

thanks, I do tai chi and various movements every morning so have tabs on how stiff I am! I've also noticed that if I do a lot more than usual in one session it becomes negative too.. so there's a fine balance of how much activity to do in one session, I take paracetamol mainly if I get pain at night, I'm sure that any infection coming out or a bit hidden is hitting the immune system, and so that would be a flare... I have at least a couple of blood test prescriptions to avoid seeing the dr for that so will wait and retest in a week shame there isn't an over the counter test for ESR

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to howtotaperdown

As PMRpro has replied - many things can effect the ESR test - from a stubbed toe to an infection to your PMR - or in my case many moons ago -stress on one occasion (whilst I still had GCA ) and after effects of surgery (when I didn’t)

It’s non specific just shows inflammation body -not the root cause.

Which is why we always say -symptoms…,

Hotwells profile image
Hotwells

Hi Peter, I’ve also been taking 5mg of Prednisonein the past. But recently I switched to only taking them when needed (flare up). Last week I had a telephone appointment with my Consultant, eighteen months after what should have been a three month period. Anyhow he advised me to take Ibuprofen when experiencing a flare up instead of Prednisone as it does much about the same thing (anti inflammatory). He was slightly concerned that my last Dexa scan four years back was borderline due to Prednisone intake. So if possible it might be worth getting your bone density checked out.

So old buddy, take care,

Tim.

PMRpro profile image
PMRproAmbassador in reply to Hotwells

"Anyhow he advised me to take Ibuprofen when experiencing a flare up instead of Prednisone as it does much about the same thing (anti inflammatory)"

He thinks does he? In our experience ibuprofen does zilch for PMR - and if it DOES help it is more often that not a sign that it possibly isn't PMR after all - which can happen. In fact, the international recommendations for the management of PMR no longer suggest NSAIDs in PMR. And long term regular use of NSAIDs probably has more adverse effects than a very low dose of pred.

PMRpro profile image
PMRproAmbassador

I only know that the Pain Clinic here has no qualms about my need for a low dose of pred - but are very iffy about using NSAIDs for the other pain problems I have in view of the cardiac and renal risks associated with longterm regular use.

Hotwells profile image
Hotwells in reply to PMRpro

Then my friend, I wish you the very best.

Fran_Benson profile image
Fran_BensonPartner

You might be interested in one of the PMRGCAuk Week webinars we are running on the complexity of PMR - one of the things Dr Sarah Mackie will be talking about is whether reappearing aches are a flare or withdrawal symptoms. I'll be posting details about the webinars soon (hopefully today or tomorrow) so do look out for them.

Southmead profile image
Southmead in reply to Fran_Benson

Thanks I will..

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