Hi, Wendy 49 yrs old...

[wends1968]

Few months ago I was diagnosed with PMR, and only just realised this has anything to do with vasculitis. All I was told was it was a type of arthritis to do with your immune system . I'm being treated with Prednisolone now tapering off at 9mg and painkillers, whilst waiting to see my Rheumatologist to get changed over to Methothrexate or something similar. I have quite a few other health problems too. Once my Prednisolone gets under about 12mg however it stops working and I've been told its going to be about another 4 months before I get an appt with the Rheumatologist. I saw a Dr at the hospital recently who took loads of blood samples and said it was something to do with something genetic ? I didnt really understand what he meant, can anyone here tell me what he meant .

Many Thanks Wendy xx

[Hidden]

Hi Wendy,

The jury is still out on whether PMR is a Vasculitis variant but Guant Cell Arteritis ( GCA ) which can be associated with it is.

Who made the diagnosis, was it a GP or a Rheumatologist, and on what basis was it made. Did they just go on your symptoms and blood tests ( CRP and ESR ) of did they rule out other mimics?

The reason I ask is that PMR in the under 50's is rare and the evidence based clinical guidelines recommend a referral to a Rheumatologist to make the diagnosis. Many auto immune/ auto inflammatory diseases respond to prednisolone. Is the painkillers are helping them that would be unusual for PMR as it usually only responds to prednisolone.

You are welcome to phone the VUK helpline if you would like to discuss this further, I am part of the helpline team and can be contacted on [e-mail]

Best wishes

Lynn

[jinasc]

Go to this website pmr-gca-northeast.org.uk, click on the drop down heading titled Resources and read up on the Diagnosis and Treatment.

Also click on the map on the home page and see if there is a support group near you, invaluable.

Knowledge is power and you need to learn fast.

[PMRpro]

There is also a dedicated PMR/GCA forum on HealthUnlocked - with loads of people to exchange experiences with.

healthunlocked.com/pmrgcauk

There are several people who are under 50 - so it isn't that rare - just less usual and the doctors are coming round to the idea that being 49 isn't so far from being 50 and no-one told the PMR it is bound by age constraints. Both PMR and GCA occur in under 50s - there is proof of the GCA at least and many experts now feel the chances are that PMR and GCA are just different expressions of the same disease. The NHS certainly considers them to be both vasculitus.

I think it is very likely that your doctors are inexperienced in managing PMR and to be stuck at 12mg after only a few months is not unusual. But I also wonder if they suspect you may have another form of arthritis (though PMR isn't an arthritis really) that does have a genetic marker and causes quite similar symptoms. That would account for the blood sample to see if the genetic marker is present. What sort of doctor was it who took the blood sample?

[wends1968 in reply to PMRpro]

Hi thanks for the reply, I had to go have some nerve conduction tests on my left arm and hand as my Dr thinks i may have cubitol tunnel syndrome, they came back abnormal but the Dr in the hospital decided it wasn't bad enough to operate, and he ordered the blood tests after testing my reflexes and asking me some questions. He did say he wanted to test for rheumatoid arthritis even though its already come back negative, and something else that was shortened to a series of letters beginning with R that I can't now remember the name of.

[PMRpro in reply to wends1968]

Do you mean carpal tunnel syndrome? That is commonly found alongside PMR. So that might be significant.

There aren't really any tests that are specifically +ve/-ve for RA - they all fit together in a big picture, especially in the early stages. It really is very complicated and not at all simple. For example, people with RA can have a low rheumatoid factor - something called sero-negative. But there is another test that is more related to RA.

Was it maybe RS3PE? That is also sometimes found alongside PMR. But as I say all a big complicated jigsaw - and you do at least seem to have a detective team on the job, Which is always a positive

[wends1968 in reply to PMRpro]

No its definately cubitol tunnel syndrome, it affects the other side of your hand, so my little finger and the finger next to it have constant pins and needles and numbness, its a trapped nerve on the outside of your elbow. I've kind of gor used to it I've had it so long, but sometimes it gets quite bad and I tend to drop my knife. I also take Lyrica for peripheral neuropathy which affects my neck and shoulders so I literally have a pain in the neck as well lol

Wendy xx

[PMRpro in reply to wends1968]

Ah - ulnar nerve entrapment! Yes, I've had that. Don't know if it goes with PMR - no reason why not!

[wends1968 in reply to wends1968]

Sorry, forgot to mention it was my rheumatologist who diagnosed PMR after lots of bloods , an MRI on my left knee and leg, and lots of questions about my syptoms. He then decided I had PMR and Fibromyalgia. As for the painkillers they don't really help at all. The only thing that does help is the Prednisolone at 15mg which my GP doesn't want to keep me on , they've brought me down to 9mg now and so I'm back to square one. I can't even walk to the corner of my road anymore , luckily my daughter lives at home with me, I hate to think how people who live alone must feel.

Many Thanks Wendy xx

[PMRpro in reply to wends1968]

practicalpainmanagement.com...

Try taking this paper to your GP - for the meantime at least. The fear of pred is leaving a lot of people in pain and it is not really justified. What dose was still enough? If you aren't on enough there is no point keeping you on any. And no relief from painkillers istypical.

[wends1968 in reply to PMRpro]

15mg is enough to stop the pain with me, at that level the pain stops. I've been told that 15mg is a quite high dose and everyone has to taper off over the course of 2 years or so. Also the Drs told me they can't just take them off me , something to do with my adrenal glands. I believe they cause your adrenal glands to slow right down and just stopping them would be dangerous and they have to let your adrenals start working again slowly . I don't know if this is correct it's only what I've been told and read by the way.

Wendy xx

[PMRpro in reply to wends1968]

Suppose it depends how you define high dose. High dose is above 20mg, 15mg is a moderate dose and no, you wouldn't stay there for ever. If you were to develop GCA then you WOULD need high doses, 40mg is the starting dose and up to 60mg is common, even higher sometimes. But that is because there is a risk of loss of vision.

You get the symptoms under control, usually 4 to 6 weeks, and then taper SLOWLY to find the lowest dose that manages the symptoms. If you try to drop in too big steps it can cause symptoms to return and going slowly, preferably 1mg at a time usually works. Two years is a minimum, longer is more common, unfortunately.

Yes, adrenal function is a factor - but when you have only been on pred a couple of months it isn't usually a problem. So you COULD taper off - if you aren't getting any relief from your current dose.

But until you get the results from the blood tests there probably isn't much point contemplating anything. Go here and find some good and reliable info:

pmr-gca-northeast.org.uk/

There are 3 other UK charities depending where you live.

[wends1968 in reply to PMRpro]

Thankyou so much for all the info and links , I'll wait on the results and see what they say. And I'll see if I can get my next appointment with my rheumatologist a bit earlier. xx

[PMRpro in reply to wends1968]

Good luck.xxx

[wends1968]

Phoned my GP on friday to see if the hospital had sent any results back, as far as I know its negative for Lupus, (they were testing me for that as well) but he said my folic acid was extremely low and put me on it long term :/ , I'll have to make an appt and see what the other results were . xx