New girl on the block

[penstress]

I'm newly diagnosed with pmr and am still trying to get my head around it, where it appeared from and why, that sort of thing. My blood results show low levels of inflammation, which I guess is good, and my doctor has asked me to test once a week for three weeks before she prescribes anything. Is this usual? I'm located on Vancouver Island in Canada and know that there are differences in our medical systems but I am a transplanted Brit so have knowledge of the way things work on both sides of the Atlantic. I have been recommended to this site by a good friend who enjoys great comfort from hearing and reading about other sufferers, if I may put it that way. For example I recently read that this can go on for 1 -2 years. Seriously??

[DorsetLady PMRGCAuk volunteer]

Hi and welcome

“For example I recently read that this can go on for 1 -2 years. Seriously??”

Very seriously, in fact for some it’s considerably longer.

Your doctor’s obviously not 100% sure it’s PMR if she hasn’t prescribed steroids. A short dose, provided you have usual symptoms, is usually the acid test.

You might like to have a read of this for more info - and get your head around the fact that’s it’s a long term illness. As for where and when, that’s a question we all ask.... but stress is usually the final straw that makes the immune system go haywire -

healthunlocked.com/pmrgcauk...

[penstress in reply to DorsetLady]

Thanks so much. I will read and learn.

[PMRpro Ambassador]

You aren't going to like what I'm going to tell you but I believe it is better to know the truth and then you don't become too depressed when it doesn't go the way we'd all like ...

It can go on for a lot longer than 2 years - only a third of patients are off pred by 2 years, half of patients have it for more than 6 years! Though to be fair, most of them are on only a very low dose of pred.

About 1 in 5 patients have low blood markers - but it doesn't really reflect on how severe your PMR is or how long it will last. It is more common to find low blood values in younger patients. I do hope she doesn't assume because you don't have raised markers it isn't PMR - they may eventually rise but it can lag behind for up to months unfortunately.

Honestly - don't stress about where it came from - no-one knows what causes it, other than it is probably a series of insults to the immune system and finally one thing is the straw that breaks the camel's back and the immune system flips out and starts attacking the body by mistake. And if anything is bad for PMR it is stress!

There are a couple of Vancouver Island people around and a couple of former VI residents as well. I loved my tour of the Island a few years ago!

[penstress in reply to PMRpro]

Thank you for your frank reply, I know I'm prone to stress related disease which is why I wondered if there was a link. I got a bad case of shingles about 5 years ago, on my face, in my mouth and down my throat. Still get intense itching and it came upon me after a very stressful period in my life. I've never been a shouter. Perhaps it's time to start. As they say, better out than in! Your information was really useful and I'm following up on it. So glad you enjoyed your time on the island, I moved from Toronto to here and the difference in climate reminds me of England.

[PMRpro Ambassador in reply to penstress]

You mean it rains a lot

[penstress in reply to PMRpro]

A hell of a lot!! Nice though...warm and sunny today and all the trees are in blossom.

[PMRpro Ambassador in reply to penstress]

Earlier this year I asked a PMR friend who lives in Cumbria if it has stopped raining in the north of England this winter. "Only when it snows ..." she replied ...

[penstress in reply to PMRpro]

Snow on the south island? Not so much, although climate change is making a liar out of me. I used to live on a remote acreage which was beautiful (cougars, bears, deer, wolves - you name it) but impassable in winter so I always had a well stocked larder. Advanced age took preference over solitude and inconvenience but I still miss it. Now if I could find the secret of reverse aging all my troubles would be over, including the PMR, it seems.

[HeronNS]

I live in Canada, on the other coast, and I must say your doctor's approach is not one I've heard before. Usually what one would expect is symptoms are more important than inflammatory markers, as these are so variable and as many as 20% of PMR (and GCA) sufferers may never have raised blood markers. Given this fact, your doctor should run tests which rule out other health issues which could present with polymyalgic symptoms, not repeatedly checking the inflammation markers, and when those prove negative, then you are given a trial of a moderate dose of pred. In my case it was 15 mg, but I believe current guidelines say as much as up to 25 mg. If you get a rapid response, within as little as a day, or up to a week, that is the acid test as Dorsetlady says. If you don't respond to pred at this moderate dose they should do further investigation, although in some cases all that is needed is a little more pred for a few days. They should never use a high dose for PMR (unlike GCA) as it's the response to a moderate dose which wouldn't deal with other issues which is the key to diagnosing PMR.

If you respond well then you stay at that dose for at least a month to six weeks and provided your symptoms remain under control you then start a very slow taper to find the lowest possible dose which keeps the symptoms at bay. This taper can take a year or more. In my case it took about sixteen months to get to 2 mg (which is quite good actually) where I stayed for several years with occasional attempts to taper lower. A bit more complicated than that, but you get the idea. I've had PMR since 2014, not diagnosed for a year, and have not gone into remission yet.

The median length of time PMR lasts is nearly six years, but much of that will be at a very low dose of pred.

[Hidden]

Hi welcome, I'm in UK and only diagnosed in dec last yr my dr told me can take generally 2-5years, I really wonder if I'm ever going to used to this, but the ppl on here have been so lovely and helpful and most definitely understanding even when I need to just need to think out aloud, even thou it only been few months for me just knowing that I'm not alone and all the ppl on here know what yr going through cause they all going through the same pain, frustration, they know what they are talking about so I would say if you need to ask a question don't matter how small someone will always give u an answer

[penstress in reply to Hidden]

Hi there! Sorry you're having a rough time but so glad to read that this is a good and supportive site. The future doesn't look quite so gloomy when you've got friends around. I love email!!!!!!

[piglette]

Has your doctor prescribed steroids yet to test if you might have PMR? Often people try steroids for a week or so, if they work it is likely to be PMR, if they don’t it probably isn’t. That is assuming you are given the correct dosage of course.

Asking where it comes from reminds me of the poem

“Where I come from

Nobody knows;

And where I'm going

Everything goes.”

[penstress in reply to piglette]

Love the poem, a new one on me. I have a suspicion that the low dose, short term route is the one my doctor is looking at. She's already had her husband (also part of the practice) call me to ask some questions so I feel fairly confident that they are both on the case. Of course, that doesn't guarantee a perfect outcome but we shall see.

[piglette in reply to penstress]

The only thing is that there isn’t a low dose, short term route with PMR. Your doctors should know that, although an awful lot don’t.

[penstress in reply to piglette]

Duly noted. Thanks

[whitefishbay]

It mostly goes on for more than two years. However, you can learn to live with it and get your life back (maybe on a different scale). Once you get on prednislone things will look better. This forum is the best thing out there so welcome.

[penstress in reply to whitefishbay]

Thank you!

[Daffodilia]

Kate Gilbert’s book on PMR very good and this forum and website - join charity PMR/GCA uk for magazine

[penstress in reply to Daffodilia]

Thanks, you're the second recommendation I've had for the book so it's obviously a good choice.

[Snuggs]

Hi penstress I was diagnosed in Feb this year, my doctor checked my PMR markers once a month for 3 months before he prescribed prednisalone. I have to say they were slightly raised at 22 but now after taking pred they are reducing now at 13. I had to reiterate strongly that something isn't right I know how I am feeling. Maybe try talking to them again and push how rubbish you are feeling. Hope you get sorted soon.

[penstress in reply to Snuggs]

Excellent advice. That's exactly what I'm going to do. Thank you.

[benhemp]

Others more experienced than I may add to this, but you should know that it is possible to have polymyalgic symptoms without having PMR. I also understand that it is also possible to have PMR without having the typical inflammation markers (CRP, SED) of PMR.

[penstress in reply to benhemp]

Good to know, thanks.

[PuttyPenguin]

Hi Penstress. One of the best things that I did, having been diagnosed, was join this forum and read Kate Gilbert's book on PMR & GCA. The rheumatologists tell you nothing! Once diagnosed you're on your own. Good luck!

[penstress in reply to PuttyPenguin]

Thanks a million

[Purple-Owl]

What are your symptoms? As blood markers are not necessarily an indication of pmr, symptoms are what shows. If they diminish with prednisalone, it's probably pmr.

[penstress in reply to Purple-Owl]

Muscle pain in my neck, shoulders, upper arms, thighs and backside. Mornings are worse and getting in and out of the car/chair. Sitting is relatively comfortable and lying in bed....ah bliss! I could stay there all day. Just a side bar that I'm starting to follow, this all came on after a particularly nasty conversation with my other half regarding money. Perhaps there's a link?

[PMRpro Ambassador in reply to penstress]

Stress of any sort - medical, physical trauma or emotional - can be the final trigger that tips the immune system over the edge and it goes haywire, forgetting how to recognise the body as self and leading to it attacking in an autoimmune disorder of some sort. But that is the final straw - there was a lot of "previous" that had built up beforehand.

[alliebc]

Hi Penstress

I’m on VI as well and am so thankful for the wisdom, reassurance and resources found in this forum. Beginning January this year my doctor tried various painkillers and then sent me to the lab for CRP testing which prompted the start of prednisone at 15mg. Miracle pain and stiffness relief immediately! That’s the true PMR diagnostic test apparently, but every physician seems to make it their mission to try to keep the dose low, then the taper as short and sharp as possible. At least until they have had a chance to read up on the latest research links that the admins and wise people here have referenced, if gently reminded to do so. I noticed a big difference in between my first two telephone visits in the dosage advice and timelines which I would be following. Now the taper plan seems to be slowed to very much more like those in the published papers. I didn’t comment haha!

As to why we suddenly get autoimmune inflammatory conditions after a healthy and active lifestyle- who knows? But, as I told my friend, of all the nasties that are out there, PMR, which can have the pain and symptoms relieved by a well known drug and for the majority has an end date - even if long term, well, I’ll take its inconveniences and enjoy each day as it comes. That’s easy to say living in this beautiful place isn’t it!

[PMRpro Ambassador in reply to alliebc]

"That’s the true PMR diagnostic test apparently"

Not really - it is just another brick in the wall of diagnosis. The best diagnostic test is a PET-CT scan which highlights inflammation in soft-tissues surrounding the typical joints involved.

[penstress in reply to alliebc]

You’ve got that right. There are far worse places to be afflicted. Toronto, for example, where I lived previously or the UK, my original home. (Mind you, the cost of being sick there is quite a bit cheaper!) You have definitely got a great attitude, which is badly needed and the comment you made about it having an end cheered me. Thanks for that. Summer is on its way and next week is my fourth blood test after which I should get a definite diagnosis and finally some treatment. Here’s hoping.

[penstress in reply to penstress]

By the way, my comment about the UK and Toronto was aimed at Covid, not the place. I still have friends and family in both places but do not envy them their circumstances.

[alliebc]

Hi Penstress , I was just wondering how things are going for you? Did you start on prednisone and are you feeling symptom relief? I’m on 10mg ,probably going to 9 after the next CRP blood test Friday. My inflammation levels dropped really fast once I started on prednisone. I hope he lets me follow the forum recommendations of DSNS or maximum 10% reduction below 10mg.

Such beautiful summer like weather it’s hard to believe that we are now stuck on the Island and can’t go visit our families. I got my first Pfizer shot a couple of weeks ago with no side effects, but don’t know if that’s good or bad. I hope some antibodies develop in spite of the rather dire predictions. Enjoy your day!