PMR returns?

[David-F]

Hi, I developed classic PMR symptoms about a year ago, but with normal blood tests it took a while for my GP to prescribe 15mg pred last October which worked immediately. Rheumy said he couldnt really help until I came off the pred to see what was going on so I tapered off from 15mg to 0 between Jan - March this year. The PMR symptoms thankfully didnt return then, so I was discharged as watch n wait. I do have other pain issues (back/ neck/headaches/migraine) and since then have settled on 40mg morphine sulphate for the back/neck pain and propranolol/ candersartan as prophylaxis for the headaches/migraines. Not great, but have been better since mid April for a long time, and on much less medication. Last week I developed incredible fatigue and progressive shoulder /arm/hip pain with some stiffness too (although not as bad as last.time). I basically slept all weekend and suspecting pmr might be returning, took 15mg pred last night and 15 mg this morning - pain / stiffness has gone and so has the fatigue. Really not sure what to do next now - maybe keep off the pred for a few days to see if the pain etc returns? I could also try a low dose 5mg to.see.if that works. GP is great but he will just refer me back to rheumy (good) but this will take.several weeks (bad). Rheumy would not want me.on pred as i have normal.bloods.

Any advice most welcome. Is fatigue/pain related to low cortisol, and is this linked to pmr in any way? Ive not.been tested for adrenal function but there is no real.suspicion for.this. my thyroid.is ok so no problems.there either.

Confused!

Thanks

David

[Celtic PMRGCAuk volunteer]

David, if this is, in fact, a return of PMR, taking 15mg mgs of steroid last night and another 15mg this morning, then stopping the treatment to see if the pain returns is really not the answer. It is not wise to self-medicate like this - you need the advice of an expert, and a different one to that rheumy who doesn't accept that a patient can have PMR with normal bloods!

Yes, low cortisol production could result in pain/fatigue, and yes, that could be linked to PMR but, again, it is only an expert who can carry out the necessary investigations and come up with a definitive answer.

Whereabouts are you, just in case we can recommend a good rheumy?

[markbenjamin57]

Hi David, thanks for your post.

Ok, here goes:

Here are my thoughts, with the Disclaimer that I am not a medic: only from my personal experience of PMR and the immense amount of wisdom gained from this forum during the last year or so.

1. If the Preds worked immediately to relieve your (assumed, probably correctly by your GP) PMR symptoms, this suggests that it is PMR. A 'miraculous', supposed recovery from the crippling PMR symptoms is a classic sign that the diagnosis is correct - unless some other illness is lurking in the background.

2. From my experience of the usual blood tests (ESR / CRP markers?), it is known that they aren't a definitive proof of PMR and can be contradictory for various reasons. So, don't rely on these as an absolute confirmation of such. This was my experience when first diagnosed: i.e. ESR normal, CRP high. Conclusion: immune-system over-reaction to a bacterial illness (In my case, CAP - Community Acquired Pneumonia).

3. Regardless of whether you have / don't have PMR: the Preds are a very powerful drug that can be very dangerous to stop taking suddenly if on them for more than a few weeks - especially at a relatively higher initial dosage (e.g 20 mgpd +). I'm a little surprised that your Rheumatologist has given you this advice (i.e. to 'stop-dead') before further investigations, in the circumstances. Maybe your GP and Rheumatologist should be in contact with each other to join-up the dots? Either way, I suggest that you DON'T stop taking the preds until or unless you have a reliable reason to do so. I trust that others here will support this advice, from a personal / professional point of view.

4. Believe it or not (!), some GP's are better informed about PMR and the most effective treatment options for it than are some Rheumatologists, and vice-versa. So, my advice is to keep an open mind about whose advice you can best trust: and to follow the experts on this forum especially. I recommend that you listen to PMRpro and DorsetLady - they are long-suffering with PMR (and in one case, GCA - much more serious) and very expert in understanding and advising on the best path forwards. To be honest, they often put GPs and Rheumatologists to shame with their expertise.

5. I suspect (and I stress, suspect - as I'm not a medic) that the other drugs you are taking could just be just masking the PMR symptoms issue: and that this is just kicking the can down the road in terms of effective management of the illness long-term (sorry..). The (bi-lateral?) symptoms you describe (neck / shoulder / hip pain / stiffness, etc) are well-known indicators of PMR. This was my experience, and it takes a long time to get this under control.

6. Fatigue (esp. the 'deathly' type) is also an absolute classic side-effect of the conspiratorial process of both PMR symptoms and the Pred dependency which, although managing them in the short term, brings consequences of reducing the Preds by too much / too fast that can be severe physiologically. It's a catch-22, and there's no magic fix in the process (sorry again...).

There are many posts here about the process of living with, and managing the process of PMR / Steroid management to control the worst of its symptoms. But it really is a journey of Mind as well as Body!

Hope this helps..

MB

[David-F in reply to markbenjamin57]

Thanks both, to be clear my rhrumy asked me to taper from 15mg to about 7mg between Jan and March this year (for the follow up appt). I got down to 5mg quite easily then stopped in march, so i was on 15mg for 3 months before tapering. I had a full detox of all my pain meds in march/april, and after a few week's of awful withdrawals was left with non specific thoracic back pain and headaches (albeit much less - def a rebound element). The pmr symptoms went last october and only came back last week, after nearly 4 months free from pred. I have a few left so just wanted to test the theory of immediate relief again- it did, so i have only had 30mg over 24hrs in the last 4 months. My backpain and headaches are well controlled by mst / prophylaxis but the fatigue shoulder hip pain last week is very different and made me suspect pmr again. Ive had esr crp normal, and rh factor and all anca tests negative, and am othrrwise well with no other conditions suspected.

Agree about not self medicating, but after waiting 6 weeks in agony before getting prescribed pred last time I know i can safely tolerate 30mg in 24 hrs - i actually feel great now.

I need to back to gp and be referred again but dont have much faith in my rheumy at broadgreen in Liverpool. My gp may refer me out of town and happy to travel - would be useful to have a phone consultation maybe and then come in as when symtoms return, which may not be for a while now - maybe i have a very mild pred sensitive type of pmr? Agree i need to see rheumy with active symptoms and no pred in my system to hsve best chance of diagnosis.

Any suggestions for a referral? Can travel 100miles no problem

Thanks again

[Celtic PMRGCAuk volunteer in reply to David-F]

David, as you say you are happy to travel, there is a wonderful rheumy in Leeds: ~ Dr Sarah Mackie, who is a Consultant Rheumatologist and Clinical professor, very involved in research into PMR and GCA. She is based at Chapel Allerton Hospital.

[Jackoh]

I have PMR/ GCA symptoms as confirmed by Rheumy with normal/ low ESR and CRP. So these levels are no confirmation or dismissal of PMR . I believe 20% of patients with PMR have normal bloods. Best wishes for your future progress in all this .

Jackie

[David-F]

Quick update. I remain with the classic PMR symptoms, but with completely normal bloods so not really diagnosed yet. The bilateral shoulder and hip pain, and stiffness responds completely to 15mg pred, and then I remain pain free for 5 or 6 days with no pred. GP is hopefully referring me to Sarah Mackie at Leeds as I think my presentation is a little unusual and the local rheumatology service hasn't been especially helpful thus far. It is much less severe than it was in summer 2015 when I first got the classic PMR symptoms, so am hopeful it's on the wane.