FlareupPMR: Had PMR 12yrs last couple years been... - PMRGCAuk

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FlareupPMR

Rene20 profile image
16 Replies

Had PMR 12yrs last couple years been fine on low dose 3mg dailySaw rheumy 3 times during covid tried methotrexate to get me off pred.

Not successful

Monday morning woke up couldn't move.had face to face with gp never seen him before! He told bloods advised increase to 10mg daily not feeling any better.20mg not enough awaiting results of blood test tele App with GPS later this morning

Advise please on dose to take as should be feeling better by now

Anne.

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Rene20 profile image
Rene20
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16 Replies
PMRpro profile image
PMRproAmbassador

It may not be PMR that is causing the problem - and if 20mg isn't managing the symptoms it needs some investigation. How long have you been on the 20mg dose?

Rene20 profile image
Rene20 in reply to PMRpro

Sorry typo should be 10mg! Have spoken to gp this morning Ecr reading 95!Increase to 15mg daily until next app and blood tests on 22/11/22

PMRpro profile image
PMRproAmbassador in reply to Rene20

Hope that is enough - but flares are often far harder to control than it was originally.

Exflex profile image
Exflex in reply to PMRpro

why’s that PMRPro?

PMRpro profile image
PMRproAmbassador in reply to Exflex

No-one really knows. It COULD be that the body has become habituated to pred so it has less effect, Or it may be that the immune system has its response entrenched and it is more effective so makes more inflammation. The pred probably isn't so much used for its immunosuppressant action as the parallel anti-inflammatory which is slightly different,

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

As PMRpro says, sounds as if it's not all down to PMR... 10mg should have helped. As it didn't, let's hope the 15mg does...

Rene20 profile image
Rene20 in reply to DorsetLady

Let's hope so feel depressed now at your rather negative responsesKeep fingers crossed

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Rene20

Sure neither of us meant to depress you, but if you’ve pottered along on 3mg for so long, you have to consider why it’s suddenly gone awry.

Have you done anything to upset the PMR apple cart? If not, then it could be something else especially with raised ESR levels.

That’s all we are saying.

PMRpro profile image
PMRproAmbassador in reply to Rene20

I don't see what is negative about realism? That is what we deal in here. There has to be a reason for the large increase in the markers and it is fact that such flares are often harder to control, so often you may need more pred initially. It doesn't mean that will go on - but it is possible this is a relapse as opposed to you having overshot the dose you need. It happens more often than most people know,

tempusfugi profile image
tempusfugi in reply to Rene20

Sorry to hear you're feeling depressed, Rene 20. I just wanted to add that I know of at least half a dozen friends/acquaintances who have come back from Spain recently either with a cold or, worse, Covid.

Rene20 profile image
Rene20 in reply to tempusfugi

Thx for your info maybe that's the problem.My partner who is 82yrs has not been infected by me.

Rene20 profile image
Rene20

Have been fine for 2yrs on 3mg pred.came back from holiday in Majorca 20 Oct 3 days later developed a cold tested 3 times for Covid negative. Then this week Monday woke up with all flare up symptoms, have been on pred this time 2yrs.

After trying to come off pred 3yrs ago didn't work. 10mg helped but after 3 days felt more was needed.

So fingers crossed 15mg will do the trick.

PMRpro profile image
PMRproAmbassador in reply to Rene20

When my daughter had Covid the second time she had tested 3 times and was negative despite typical symptoms. She opened a different batch of tests (all issued by the NHS as she is a nurse) and with that pair of tests she had one strongly positive and the other still negative. The tests vary and are very unreliable for Omicron. It could well have been Covid.

Rene20 profile image
Rene20 in reply to PMRpro

So could have produced the flare? Thx fir info

PMRpro profile image
PMRproAmbassador in reply to Rene20

Any infection could cause a flare if it poked the immune system hard enough. But yes - and hopefully as you recover, so will the PMR

Myfoe profile image
Myfoe

well I started at 40mg bumped to 50mg to bring the PMR monster down to a full roar perhaps you still need an even higher dose to shut your PMR off

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