PMR Newbie

[blue388]

Hi all, Recently diagnosed with PMR. I am 52 and was feeling rough for a few weeks but put it down to going back to work after the lockdown, Just really tired and sore. Went to the drs after collapsing at home, and inflamation in my blood was up at 279. On 20mg of steroids for 3 wks, inflamation was down to 10 so dr reduced it and ended up nearly collapsing again at work. Had more blood tests done then and now it is gone up to 50. Just wondering do you just keep taking the tablets forever or why do some people go to rheumalogists?

[PMRpro Ambassador]

PMR is a chronic illness - not one you take a course of pred for and then stop. You start at a moderate dose and then taper it off to find the lowest dose that manages the symptoms as well as the starting dose did. Most people do get off pred as the underlying autoimmune cause of PMR usually burns out and goes into remission after a few years. One in 5 is off pred in a year or so, a third in 2 years. The rest take longer but half are off pred in under 6 years.

You say the doctor "reduced it" - how far? How? Tell us more details and we can make more relevant comments. You will need to identify the dose that keeps that reading of 10 stable and not rising - and that takes a bit of time and tapering carefully.

[blue388 in reply to PMRpro]

Thanks for the reply, Dr reduced it to 17.5 after 3 wks and then 15 after 3 weeks

[PMRpro Ambassador in reply to blue388]

Well obviously 15mg isn't enough for you at present. Which does slightly beg the question as to whether it is definitely PMR, or only PMR. What other symptoms do you have? That is the main reason for seeing a rheumy - anything that is not entirely typical for PMR and I think you probably fit that - it was a very high inflammatory score and that might suggest it is GCA. Or something else.

[blue388 in reply to PMRpro]

Hiya, thanks for reply. Dr has put me back up to 20mg now. My symptoms are extreme tiredness, sore muscles especially in my right arm. Some days just cant even lift it, it feels that heavy and sore. My head feels like it is just a ball of cotton wool, like I have forgotten how to think! Actually have felt liked I have aged 20 years overnight nearly!

[PMRpro Ambassador in reply to blue388]

There is even a research paper about that: "I suddenly felt I'd aged": A qualitative study of patient experiences of polymyalgia rheumatica (PMR)

eprints.whiterose.ac.uk/85252/

[DorsetLady PMRGCAuk volunteer]

As PMRpro says a bit more info would be useful.. but in meantime this might give you some info about what lies ahead - healthunlocked.com/pmrgcauk...

[blue388 in reply to DorsetLady]

Thanks, good article. Just trying to get my head around it!

[DorsetLady PMRGCAuk volunteer in reply to blue388]

You might need to read it a few times - and it will make more sense in a few weeks/months!

[piglette]

If you just have PMR there is no real reason to go to a rheumatologist. 75% of people do not. However if you have a GP who does not know much about PMR also some are a bit nervous of the illness, the diagnosis and steroids so they get you to see a rheumie. Or if you are diabetic for example or are very young. If you have GCA you should definitely see a rheumatologist.

[pollyg263]

take note of these ladies they helped me through my pmr from start to finish, tho it did take time. i have been pred free for 11 month now.

[Harrywogan]

Hi blue I've been in a lot of pain and have put my pred back up to 7 was at 4 and thought I was doing great as I've never got that low before but I was just kidding my self as I had to roll out of bed in morning,feel better at 7 taken me some time to get my head round it all I was diagnosed in 2017 and listening to my gp thought it was going to last 2years now iam going into my 4th. Dont have much bother with side effects from pred as iam very active now iam thinking that's not helping and mayb over doing the swimming and the walking. Spoke to my Rhum on phone and he's now leaving everything to my gp dont know if that's good or bad.

[blue388]

Hi everyone, looking for some help here. Going back to my previous post, the dr diagnosed PMR on the basis of the blood tests. Wasnt feeling much better on the steroids, (initially did but wore off very quick) He sent me into hospital where my blood tests results were still high. Had the biopsy done for GCA which came back negative. The doctor in the hospital increased my dose of steroid to 40mg. I have come off them now as could not stay on them any longer. Tapered as well as I could manage. When I was still on the steroids, the doctor referred me to the rheumatologist, who said it could be anything that causes inflammation and wouldnt be able to help me while I was still on steroids.

Went back to the doctor last week, and he sent me to a&e to access the rheumatologist that way. Blood tests came back with everything back to normal except for the white blood cells that were a bit high, so he told me I was too young to have PMR, it was probably a virus, and the pains and tiredness were brought on by stress.

I am so tired at the minute, am still working but just about. Feel very disheartened with the doctors and dont know what to do now... Is it just a matter of living with it?

[PMRpro Ambassador in reply to blue388]

"so he told me I was too young to have PMR"

Well he's wrong - it is mostly in over 50s but even younger people develop it.

I suggest you start another thread - very few people will see this in this older thread (just because of the way HU works).

But your choice is to accept his assessment or find another doctor to investigate the symptoms. I explained PMR to you above - it isn't a short-lived illness, you need to identify the right dose of pred by tapering from the starting dose and then yes, you keep taking the pills. If the pred worked well, then you should have tapered SLOWLY to find the lowest dose that got the same result. If it is PMR and you stop the pred - the symptoms will come back. Yes, you live with it until it goes away but you use the pred to manage the symptoms and allow you a better quality of life. That is what most of us have accepted we must do.

[blue388 in reply to PMRpro]

Thanks for the reply. Maybe I should have tapered slower but really didnt like the effect the steroids were having on me. Woke up most nights thinking I was going to have a heart attack. What other tests can you ask for if the drs are sure that it is not PMR?

[PMRpro Ambassador in reply to blue388]

Impossible to say - but there are other rheumatological conditions that could present in a similar way and they need various blood tests and imaging to identy if it os one of them. Mostly as you are on pred longer and reduce the dose the adverse effects are lessened, there are also ways of mitigating them and in some cases avoid them altogether. But if it is PMR, your only choice is put up with it or take pred. Hobson's choice I fear.