Pmr for 2nd time!: Hi, just a question for Members... - PMRGCAuk

PMRGCAuk

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Pmr for 2nd time!

Attic profile image
12 Replies

Hi, just a question for Members who have had PMR twice. Where your symptoms exactly the same the second time. I am feeling very poorly at the moment and am banging my head up against the wall with my Doctor. I feel as if it is PMR again. My ESR is 32. The only difference this time is that my fingers are so swollen and painful and I wonder if this can happen with Polymyalgia. I can't even get my Wedding Ring on past just below fingernail. Also got painful clicking wrists.

She did a second Blood Test because I insisted, but because esr was still 32 she is saying that

It is depression and wants to treat me for that.

I think perhaps I need a blood test for Rheumatoid Factor or such. I wouldn't mind if I was in the habit of running to the Doctors every five minutes, but I am most certainly not and it is very hurtful for her to say it is all in my mind so to speak.

I am hoping to see another Doctor next week.

Thanks for listening, Jenny

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12 Replies
Koalajane profile image
Koalajane

sorry to hear this. Do you remember what your ESR was last time. My last one was 27 and the doctor said okay but my diabetic nurse said it was high for me as mine are around 9 when PMR is controlled. She looked at me and said “you are hurting aren’t you?” I had gone for my diabetic review but she was right.

PMRpro profile image
PMRproAmbassador

Attempting to zip my mouth here ... SInce when did depression casue swollen fingers? I HATE it when they try to play the mental health card just because it is in the news,

I had swollen fingers with PMR - it is part of RS3PE syndrome which does sometimes accompany PMR although it can occur in its own right, It also reponds to a similar dose of pred and tends not to return.

However, a more common cause of swollen "sausage" fingers can be certain forms of inflammatory arthritis, Checking the RF factor isn't very informative - it can be high in the healthy, low in patients with sero-negative arthritis.

my.clevelandclinic.org/heal...

I'm glad you are seeing someone else - hope they are less blinkered ...

Ooops - forgot to say, everyone I know who has had PMR twice says they were different.

MamaBeagle profile image
MamaBeagle in reply to PMRpro

The Dragon awakes Pro, and it is definitely different second time around. If you look at my reply to Attic above.... I've got some pred left over from last time and I am so tempted to take a starter dose on Tuesday after blood tests......Bummer, just over 12 months remission. But it is what it is...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to MamaBeagle

Sorry to hear that,😞

MamaBeagle profile image
MamaBeagle in reply to DorsetLady

Thanks DL, at least I'm armed with more knowledge than first time around thanks to you guys❤️

PMRpro profile image
PMRproAmbassador in reply to MamaBeagle

12 months is a bit long for it not to have gone properly for at least some time - of course, it might have gone long before you finally got off pred with the taper to accommodate adrenals having been a delaying factor. Hopefully this time will be a breeze now you know what not to do!

MamaBeagle profile image
MamaBeagle in reply to PMRpro

Thanks Pro, and you're right I do know a lot more this time around 🤞the doc lets me get on with it 🤷🏼‍♀️

Attic profile image
Attic in reply to PMRpro

Thanks PMR pro. I found the link very useful. Thanks to all the Ladies that replied to my Post.I am going to try to get into the Doctors on Tueday but am refusing to see the one who is obviously fobbing me off.

Jenny x

MamaBeagle profile image
MamaBeagle

I reckon I'm starting 2nd time around and it is different. Had doc appointment last week and told her what it was. She's insisting on a blood test, although I did point out to her it mightn't be a reliable indicator, she did acknowledge that..😉! First time only symptom was in creasing pain in hips which I thought might be arthritis 🤷🏼‍♀️. When one night I woke with what felt like a girdle of fire....diagnosed immediately with PMR.

This time it's more shoulders, arms, tingling in hands hands now going into hips and legs and it's less burn but more ache but pain when I try to move affected limb. And I'm exhausted.

Oh....and this time can't raise arms to undress.

Blood test Tuesday, doc promised to review results and contact me Wednesday.

I'll be on her case if she's late!

Honestly, if she's in doubt she jus needs to Google those symptoms and up pops NHS link to PMR!!!

PMRpro profile image
PMRproAmbassador in reply to MamaBeagle

Especially the inability to raise arms above shoulders!

MamaBeagle profile image
MamaBeagle in reply to PMRpro

👍

darkred profile image
darkred

PMR from 2010-2011. Pain in lower body. Difficulty turning in bed (pain). Went from sitting to standing slowly to lessen pain. PMR successfully treated following regimen provided by rheumatologist. Followed her strict protocol and had no flares.

PMR 2023. High sed rate. Pain in upper body (not lower body). Difficult to move my arms without pain in shoulders. Started on prednisone 15 mg (same starting dose as in 2010). Now at 10 mg. Treatment successful thus far. I apply warm "bed buddies" before drifting off to sleep for the night.

I empathize concerning problems in dealing with this disease. We try to make the unpredictable more predictable and manageable. I'm grateful for all the knowledge shared by others.

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