PMR or not PMR- if not what is it?

[Daisyfield]

I’m 53 and was diagnosed w PMR by GP in April 2019 with mainly bilateral shoulder pain and generally achy. I was reluctant to take steroids but did after 2 weeks of dithering and the pain went away in shoulders completely but I was generally achy still and on mild excercise my legs felt like lead.

My bloods taken throughout have all been completely normal with no changes at all.

My GP wanted to refer me last May as she doubted her diagnosis. That referral finally came through last December. - more of that in a mo.

I have fairly slowly and steadily reduced to zero coming off steroids last November. I had a flare at about 6mgs with headaches so stayed there. Then couldn’t get below 3mg without headaches. Then last August a friend with another inflammatory illness said how hers improved by taking multivitamin-so I did and managed to get to zero - maybe a coincidence or maybe not? .

Last summer we went to Scotland and did lots of walking and cycling. Something I used to do a lot of. I found that long hikes of 12 miles I suffered really bad leg cramps - felt ischaemic almost- real sickening pain - and intense pain. I have lost lots of body strength and have a pain deep in my R biceps when I lift.

I have no shoulder pain or joint pain. I am achy mainly in mornings and evenings but daytime is mostly fine. I have lost strength and stamina. I am no where near the 51 year old me before this

The referral rheumy said not PMR and took more bloods than before (still waiting) but couldn’t offer another dx. He got me to grip his hand and said my strength was ok, but I think that’s relative. My strength is very different to my 83 yo mother. But I am so much weaker than before

I’m waiting for a follow up appointment and blood results.

I just feel a bit fobbed off. Maybe I don’t have PMR or maybe I do, but I haven’t imagined these past 18mimths. They have affected my life.

I’d rather not take steroids and feel I can manage without, and can put up with this level of achy ness. Maybe I am recovering very slowly.

But I feel I’ve been left adrift with symptoms and no diagnosis.

Are there other people who reduced to zero, but had a long transition phase back to feeling strong with stamina again? Can I get back there? Or is this me for the future?

[SnazzyD]

Oh dear, it’s all become quite complicated hasn’t it? The usual approach is that the steroids reduce at the same rate as the autoimmune activity. This means the Pred following the body not the body following the schedule. If you do have PMR and there is nothing obvious to say you haven’t, 18 months to be out the other side with no autoimmune activity is rather good going. Some people do it but not many. Getting low inflammatory markers while taking Pred is not a sign that you are in remission; it is the whole point of taking Pred- to get the inflammatory markers down. Many have no or little rise at diagnosis either.

It is quite possible that your autoimmune activity had not shut off and has been slowly building up from a low level to give you the symptoms now and cause claudication in the muscles when you ask them to work hard. Pain and stiffness daily in normal functioning in the day is not normal or par for the course.

Generally, by the time you end the Pred you are symptom free and the only issues are low adrenal function that can cause fatigue a low grade fluey aches (not stiffness) and poor condition. By that I mean pulling muscles easily and having to build up but not persistent deep stiffness of whole muscle groups.

It can be a minefield with docs and diagnosis. Some think PMR is a 1-2 year disease even though this isn’t borne out by research. Some don’t seem to join up the dots with cause and effect and think low markers while on Pred mean remission. Some are heavily prejudiced against age and really don’t like diagnosing PMR in the under 60’s, again against accepted evidence and compelling history. The grip thing I’ve had as well. You know your grip is rubbish but they are calibrated to people much older than you.

The worst thing is when you reduce too quickly, the disease is still cooking away but the doc thinks that you’ve had ample time to get better, therefore it isn’t PMR.

I’d really push for the reasoning and evidence behind an alternative diagnosis and not settle for a hunch with no basis. It might also be good to read as much as you can on the topic so you are knowledgeable as many have had to do. If you have PMR, sadly it sounds you need to go back on Pred and reduce at a speed that compliments your recovery. The reality is that PMR is life changing, not just the Pred. I know how it feels, I was 54 with a very active life and my holidays were fell hiking. That stopped over night with GCA and very high dose Pred. 3.5 years later I’m starting to build up.

[Daisyfield in reply to SnazzyD]

Thanks for the long and thoughtful reply. I’ve read the PMR book and I feel my symptoms fitted with PMR - or at least my early ones did. I think my next appointment is next month so I’ll see how I go but push more For a diagnosis when I see him.

I think he is the sort to say normal bloods mean no PMR

I know I’m impatient to feel better and know my symptoms now aren’t as bad as many that suffer this illness.

I just feel a bit as if my symptoms have been discarded

I feel that more research would help understand this and also help towards recovery.

I guess it’s hard at the moment with Covid etc.

Thanks again x

[PMRpro Ambassador]

Why is he so adamant it isn't PMR?

Mind you, one lady I know said it was a good year before she felt back to anything like normal so that may be the answer.

[Daisyfield in reply to PMRpro]

He thinks no raised blood markers means no PMR! Also the fact that I walk in unaided I think. But I do wonder if recovery is long from no pred. It would be great to know more stories on this.

[PMRpro Ambassador in reply to Daisyfield]

Well he IS wrong! However - if you don't want to go back on pred then you have to wait and see really. If it is the "?PMR" poking its head out again - and the timescale is about right - it will continue to build up.

But you know - what you describe as having done in the summer, most people are grateful they can walk on the flat for a couple of hours. Bear in mind that the time you wee ill with whatever it is plus steroids won't have left you with pristine muscles and fitness. I was 51 and at the gym every day for classes and the machines when PMR started - I had to change gyms to one with a pool and aquafit, using gym equipment was out of the question and for skiing I had to start from a very low level or I was in agony for days. I started in early December with 3 short runs and a day rest - it took until after xmas to be able to do significantly more and the end of January to ski on 2 consecutive days. PMR is life changing - however fit you were previously. Look for Skinnyjonny on her - training for marathons and climbing the Himalayas to in a wheelchair. He is back to the Himalayas now but that has been a few years.