Polymyalgia

[ian16527]

It has been suggested by my Gastroenterologist that I might have this or Fybromyalgia.

But I am unsure as I didnt fit the profile when it first started as I was 45 and male

Background is I have had Crohns Disease for39 years. Therefore my immune system has been battered by imuno suppressants and Pred for many years - although since 2016, I have been off the Imuran and no Pred for about 10 years.

Since 2010, I have had cardiac ectopic beats followed by ache in my chest/neck/sternum and shoulders. This hurts on movement and waxes and wains. I was 45 at the time

This ectopics were replaced by Atrial Fibrillation in 2012 and again followed by the aches and tenderness.

Its always the same pattern, coupled with fatigue and cold sweats I now find any lifting or even sometimes doing a little weeding in the garden brings the sweat and weakness on.

I suspect its an autoimmune thing as if I have a Crohns flare up, there is no problem with my chest etc.

The docs focus on the AF which is getting very problematic now and I am on the waiting list for an ablation

Does this sound like PMR or I am barking up the wrong tree. I have stopped going to the GP as they said they haven't a clue.

Any thoughts as I am getting desperate🙄

Thanks

Ian

[PMRpro Ambassador]

One third of PMR cases are male. While the guidelines say over 50 - that does NOT mean it doesn't happen younger and Prof Sarah Mackie in Leeds who is a leading PMR specialist, says she has several patients who are under 50. Younger patients tend to be atypical and probably so do men!

I have AF which started about the same time as the first PMR symptoms and worsened with flares of the PMR. It had been well medically managed until I had my bivalent booster Covid jab last November when it went mad and I am now awaiting a cardiology appointment, potentially for ablation (I hope, had enough of this!),

Have they done bloods for ESR and CRP (not that they are particularly reliable in the younger atypical patient), If they were raised it would make fibro less likely, it isn't inflammatory usually.

[Kendrew in reply to PMRpro]

Going to quickly PM you.

[ian16527 in reply to PMRpro]

Thanks for that useful info.

As this has been going on such a long time, I plagued the GP's for years and had lots of blood taken so quite possibly ESR and CRP as these are usual for Crohn's as well. ESR was the old test which I thought was superseded with the CPR one

[PMRpro Ambassador in reply to ian16527]

No, done alongside each other and some experts think that ESR is more meaingful in PMR. My ESR was raised for me but still within normal range - my CRP only moved up once, on a day I had some bad unrecognised a.fib. In some people neither of them are raised - and that fools a lot of doctors.

[HeronNS in reply to PMRpro]

Do you know here my doctor wasn't allowed to order both at the same time. For a while she ordered ESR but after a couple of years CRP (after that's what a locum ordered) and current doctor has continued with same. Is there any particular reason why one is preferred over the other? I understand ESR is more time restricted in that it has to be processed at the lab within a short time of being drawn.

[PMRpro Ambassador in reply to HeronNS]

I think there was a study that found ESR correlated better in PMR but really it is something that very much depends on the patient and at the outset it makes sense to do both - it really isn't that unusual to find one patient has a raised ESR but not CRP and vice versa. I think it is important to identify what works for you and stick to it. And it is why symptoms always trump lab results ...

[LucilleG in reply to HeronNS]

It's the same in my province as well. I guess the Medical Service Plan won't pay for both of them at the same time. I did get around this at one point, with a different GP ordering the ESR, as the CRP was a standing order from my rhuematologist.

[piglette]

I think one big difference between fibro and PMR is that steroids have no effect on fibro while pain killers can help. In the case of PMR steroids usually work like a dream and painkillers are pretty useless.

[Erikaknitssocks]

Ian, the symptoms you describe - fatigue and sweats in particular - are for me a sign that my Large Vessel Vasculitus/ aortitis is flaring. When I was initially seen by my rheumatologist (as I also have inflammatory arthritis) and I described how absolutely exhausted I was getting, it was thought to be ‘fibromyalgia of chronic disease’. I subsequently had pains in the back of my chest and because I’ve previously had a PE (not relevant, only explains why I was concerned and the immediacy of hospital follow up) I saw my GP and was sent straight for X-ray and then a CT scan where they discovered that the large blood vessels from the heart were inflamed. I was treated by infusions of steroids and then weekly injections of Toczilumbub (sp?), which showed improvement on the next CT scan.

(I have previously had a couple of TIAs, prior to the LVV/GCA, but thankfully do not have AR.)

My symptoms all developed in the year after my 50th birthday. That year I did 3 cycle sportives, including 50 miles on my 50th birthday….. I supposedly was too young to have PMR but I certainly have the associated LVV/GCA that fits some of the symptoms you are describing. I felt as if I just had a small reserve of energy for each day and once it was used up I was so exhausted I couldn’t function. It’s definitely worth considering as once I was treated the sweats and absolute exhaustion went.

Good luck

[ian16527 in reply to Erikaknitssocks]

Thanks for that reply.

Just googled it and theres a lot of symptoms, but the one that stuck out was differential blood pressure, which I have. I had a contrast CT scan last May when I was in hospital after an AF attack but they said it looked fine.

Does this condition come and go?

The other thing that affects me is lifting anything. I can cycle for 15 miles without any issue but if I try to lift the bike, then I get sweaty and feel weak. I have avoided heavy work for years, although I can walk cross country daily with the dog without issue, although I still overheat and sweat which seems to happen a great deal now

[Erikaknitssocks in reply to ian16527]

sorry Ian, I just don’t know. Mine improved with large doses of steroids and then the TCZ injections… I suspect that means the inflammation could not have just gone by itself. I had to come off the TCZ (because it worked too well and was lowering my neutrophils too low. I was gutted because it had worked so well for me). I was then put on methotrexate (without any side effects 👍🏻), but it’s not been effective and I’ve repeatedly been on steroids and am due to see my rheumatologist in June when he will likely consider another drug.

It might be something other than Vasculitis of course, but for me I’m relieved that I saw my GP when I got the chest pain as it got treated. Without treatment it could have led to another stroke, maybe more serious than the TIAs.

There are others on this forum much more knowledgeable than me and can advise, but PMR does affect the neck, the shoulders symmetrically and can also symmetrically affect the hips.

I got what I thought was tendinitis from cycling in my hips. This got worse and a scan showed it was bursitis in both hips. Then the neck and shoulders kicked in and I couldn’t turn over in bed, get on/off the toilet, had to crawl up stairs etc. I’m sure this will sound familiar to lots of people in this forum. Hopefully it will not be what you experience, as I went from being a fit 50 year old to feeling like I was living the life of an unfit 90 year old! I then had a couple of TIAs blah blah… the vasculitis didn’t actually kick off till a year later after a flare of the inflammatory arthritis.

I can only describe how I was affected… it’s good that your gastro is considering this and I think you should seriously consider taking those concerns to your GP. It was my GP that recognised that something systemic was going on and referred me to a rheumatologist. It was my GP who sent me for the investigations that found the Vasculitis.

good luck 🤞🏻

[PMRpro Ambassador in reply to Erikaknitssocks]

Did the rheumy try reducing the frequency of the TCZ jabs? I know that has worked for a couple of patients whose neutrophils fell.

[Erikaknitssocks in reply to PMRpro]

Yes we tried it - I am a bit of a background lurker on here, so I knew that others had been on fortnightly injections. I asked my rheumatologist if we could try this - it was not something he’d come across, but he was happy for me to give it a go. It didn’t resolve the issue with the neutrophils for me though, even on fortnightly injections I was neutropenic. Shame, as TCZ was like a wonder drug for me 😂

[PMRpro Ambassador in reply to Erikaknitssocks]

I think you have to come off until the neutropenia is improved and then go onto less frequent doses - even 3-weekly can make a big difference to the pred dose.

As for "it was not something he’d come across" - has he not read the clinical study data before using it? One arm of the trial used weekly jabs and one bi-weekly, There was only a minor difference in the results but the weekly ones did work better. I am really amazed at the lack of knowledge about the use of TCZ on the part of the doctors using it,

[ian16527 in reply to Erikaknitssocks]

Thank you - This has been going on a long time for me, just gradually getting worse.

I am on Apixaban to mitigate the stroke risk associated with AF and I hope you will not get any more - fingers crossed

[PMRpro Ambassador in reply to Erikaknitssocks]

Just for info - tocilizumab. But we call it TCZ which saves a lot of typing and thinking ...

TCZ is approved for Takayasu's Arteritis in the UK - and your diagnosis would fit with that apart from being over 50 when they found it - their age concepts are crackers! One lady had a TA diagnosis originally and noticed it had been changed to GCA - she queries and was told it became GCA when you were 50!

[ian16527]

I have to say the pains are not bad, mainly aches with a sharper pain on movement, so not sure how much pain one gets with these conditions

[Viv54]

Hi , i think the tired /weak / sweating feelings could be down to your AF.My husband had similar problems,until he had Ablation . I think the symptoms your having are classic. My husband has always been a strong person,he now has to take life at a slower pace , aches ,pains and all. Good luck hope things improve .

[ian16527 in reply to Viv54]

Did he have PAF or continuous and did he feel like me all the time or just when having an attack?

I have fast PAF and have had 3 episodes this week so totally fed up with it. I am waiting for a cryoablation but have a PIP Fleccinade which we think is not working. Thanks for your well wishes

[Pixix]

I have fibromyalgia and polymyalgia. They are quite different. Fibromyalgia can be detected by a doctor pressing various points round your body & seeing if they hurt, or your body reacts. I had steroids at the same time as fibromyalgia (no PMR, but for chest infections) & they don’t help the pain of fibromyalgia. Then I got polymyalgia (diagnosed by my gp) & started steroids. He said he would phone me after I’d taken them for a week, as, if it’s polymyalgia I would see a good improvement. I did! It took about 3 days, but there was a definite improvement. Hope this helps a little.

[ian16527 in reply to Pixix]

Off to the GP this afternoon so will discuss it. Thanks

[Hoofprints]

Hi there.

It might also be worth your while taking a look at this charity's webpage:

vasculitis.org.uk

Just in case you have another form of vasculitis that is not PMR. It's often hard to diagnose these conditions properly or in a timely fashion, especially if you're someone who doesn't present with typical positive blood results.

It was thought I had fibromyalgia alone until I was tested for the anti- C1q antibody and subsequently diagnosed with urticarial vasculitis syndrome.

Good luck 🍀