Have just spoken to GP about my latest blood results , a month after he diagnosed PMR. I am not taking pred but started HRT a month ago in the hope it would ease muscle aches but also for hot flushes , brain fog , headaches , bone protection & other symptoms . Cannot say in all honesty that it has eased any menopausal symptoms, although I’m on the lowest dose so I may need to increase . BUT blood tests show lowered markers for PMR !!! Maybe a fluke ? He said my levels are just above high end of normal ? So another blood test in a months time. If they have dropped again , yipee no pred . Has anyone heard of this happening before ? Have also gone lower carb to lose weight but in anticipation of taking pred. Could this have an affect on plasma markers ? Any feedback would be gratefully received, thank you 😊 PS Thighs still hurt, knees & feet still painful & holding me back.
PMR markers dropped: Have just spoken to GP about... - PMRGCAuk
PMR markers dropped
But are the PMR symptoms improved? Markers are very unreliable and all sorts of things affect them - they are not specific to PMR.
My PMR started a few months after I stopped HRT because of the latest scare story at the time. There is a peri-menopausal version of PMR (in terms of symptoms that is) that does respond to hormones being sorted out but I don't know if HRT as such will do it.
Thanks for replying , honestly I can’t say that my symptoms have improved . I still wake in the night with hip aches & my thighs feel tight like the muscles will snap if I stretch them. I really don’t know what to do. I have an inflammatory bowel condition & I’m terrified that pred will cause it to flare up. I’m trying to decide if it’s better to live with what I have rather than treat it with pred & risk a whole host of other problems
I'd be surprised if the pred caused it to flare up, it usually helps - what probably happens when patients with inflammatory bowel conditions have problems is that the condition flared but wasn't noticed because the pred masked the usual symptoms and it wasn't found until they perforated which obviously is not a good thing.
DMARDs do help some people - are they worth considering? I lived with unmanaged PMR for 5 years - it was truly awful. And some experts think that unmanaged PMR is more likely to progress to full-blown GCA - and then your choice is stark: high dose pred, even with tocilizumab added in, or risk irreversible loss of vision.
That’s what doc is most worried about , developing GCA. This is a mine field ! I’ve been moaning about my feet for years , had X-rays and scans to be told nothing wrong , I know dam well there is & now one of my toes is permanently swollen & burns , all I can wear are flip flop type sandals , god knows what I’m going to wear in the winter. Sorry to moan but I’m so frustrated with it all .
Tell me about it!! Both my big toes did that for a few years - and I wore Norwegian socks and Birkenstock sandals in winter. Luckily I was usually able to avoid going out when it rained. The other option that was not as awful as most shoes was my lovely blue leather Meindl walking shoes because they held my feet firmly and kept pressure off the toes. Hardly high fashion but couldn't really see them under trousers or a long skirt ...
For approx 4 months I've suffered numb toes on my left foot,came on out of the blue one evening while I had my feet up. Now the pad under the toes are painful on same foot. Not sure if it's vasculitis. Seeing rhuemy in Oct so will discuss it with him.
I'm so surprised you're able to cope with the pain from PMR....surely you must be taking some sort of painkiller and anti-inflammatory tablet. I had to until I was finally diagnosed with it. The relief after taking the first three 5 mg tablets was amazing the pain had gone within half an hour. Sad I went on to get GCA after reducing Pred down to 8 mg. However, on the downward slope and next week reduce to 13 mg from 40 mg. Pred has its job to do, and that's reduce inflammation. Also you are at risk of GCA by not being protected, although not everyone gets it, but I wouldn't want to take the risk by not having taken Pred in the first place, since sight can be lost very quickly.
Anne
"surely you must be taking some sort of painkiller and anti-inflammatory tablet"
They very rarely even touch the pain of PMR - only ever took the edge off for me and not enough to make it worth risking the adverse effects.
Before diagnosis I was taking Solpadeine and Ibuprofen. But like you've said they only take the edge off, but I needed something and would wake up in the night and take them then too. All I can say is thank goodness I ended up going private to get diagnosed, dread to think what what have happened re GCA had I not. Not sure how anyone can cope with the pain from PMR. I agree again, Ibuprofen should not be taken by seventy yrs olds and older due to possible stroke/heart attack. It was a locum doc that said I had to come off them. He prescribed morphine for my pain still not realising what I had. Wish I'd know about PMR at the time as I'd have suggested could I have it...probably told no. Dreadful these days when we have to diagnose ourselves or pay for it.
This is the thing , I’m not in pain unless I climb stairs or walk for more than 15 minutes ! This is why I don’t think I have PMR !
Neither am I on pred but others have pain - everyone is different, But you are right - you need to be sent to a rheumy if this a decision by the GP. That really doesn't fit with PMR - and atypical cases need to see a specialist. It sounds more like bursitis being aggravated by use and you can have that as part of PMR but it can also appear in its own.
The symptoms are key not the blood results unfortunately. The bloods are not PMR markers specifically but general inflammatory markers that can mean inflammation anywhere. Not everyone gets raised markers with PMR. It’s all an educated guessing game really.
Thanks for getting back . I’m just so confused by it all . I can live with the pain in one sense but having said that my knees & feet stop me from doing so much. Everything I read on line says that PMR rarely affects knees & never the feet .. & it’s always been my feet that are the main problem
I had knee pain and dreadful tendinitis/synovitis in both feet and hands.
Yes it dos Aries, Started in my neck, shoulders, hips and knees. One foot now too.
Estradiol which is an HRT is a steroid hormone. There are loads of steroids, as well as the corticosteroids like prednisone. Personally find that if I stop HRT my RA goes a bit mad. By try explaining that to a male doctor! So for me all these things are linked.
That’s very interesting! And makes perfect sense ! I have the mammoth task of persuading my male doc to change me to the HRT gel & pil at night at a higher dose ... wish me luck 😂
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