PMR or Not

HI, Thanks for your reply, you are so lucky to have a GP that knows what's what.  Did you have to convince him, and if so how did you do it.

Hi Pam, sadly no, it was a total fluke. Initially he took an educated guess when he saw how much pain I was in and yet my bloods were clear. He said he wanted to "try" something (that was the pred) when I responded drastically in 24 hrs he said he was right in what he'd thought and it was PMR with a query over GCA. But then within 2 weeks he dropped me from 40mg to 30 in one step. When I had a huge flair up, I found this forum, did loads of reading, gleaned lots of info/advice after I left a post and then I rang him to discuss further, but he was on holiday and another lady GP put me back up in dosage, told me how to reduce and told me about the Bristol Paper (which EileenH on here had pointed me to.) You can find it here https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

 I haven't yet spoken again to my own GP and don't until next week. That'll be an interesting conversation! I feel for you as it's bad enough suffering from PMR never mind having to fight for a diagnosis. 

We're "special" 

Thanks for your reply, I was never able to convince my rheumy that I had gca as my markers were normal but I had pain/ache in my jaw when eating and severe pain in my temple and head that resolved when taking steroids....

I have grave doubts that I'm going to be able to convince my GP to refer me but I'll have a damn good try

If he does not play ball, a trip to A&E and ask to see the Consultant in charge and tell him everything.

GCA is not to be messed around with, your sight is at risk.

And I'm another "special" person then - my ESR reached the dizzy heights of 7, it is more normally 4, and my CRP has only once been raised and was back to normal a week later - the blood was taken when I was having an episode of atrial fibrillation that I didn't realise was a/f. I, too, was in pain and couldn't do much outside the house for over 5 years - "You bloods are normal, there can't be anything wrong"! Had I seen a different GP in the practice it would have been recognised but the lady was part-time and was off on materntiy leave more than she was there in the period.

Hallelujah that a GP can and did recognise PMR without the support of lab results - it is and should be a clinical suspicion, supported by tests but not negated by normal values. 

Sounds suspiciously like GCA to me - I didn't have the head pain but I did have jaw claudication and a few other things that would normally be seen as GCA. Even 15mg of pred sorted all mine out, I only once had some double vision and no headache so the rheumy wasn't concerned since he knew I knew what to look out for. If you get ANY visual symptoms straight to A&E as Lodger says.

Must remember that " clinical suspicion etc..."  I am however indebted to you and others on the forum as I would have been clueless in tackling the doc otherwise. The issue is we are all different and like a lot of people I have not displayed all of the textbook symptoms and some of the others. I don't envy docs their job in diagnosis. 

Your Rheumy should realise that both ESR and CRP are guidelines only and the medical symptoms and what the patient feels is more important.

2 years is quoted but we don't know how many get through it in two years as they are probably people who sail through it.  I have only met five people in the last 8 years whose pmr has gone into remission within 2-3 years and 3 of them were men.

Don't be bullied into dropping your steroids  - have another go at him or go talk to your GP and discuss how you feel about it all.

Fight your corner, it is your life and your quality of life that matters, not what they think they know.

Why can they not understand that the ESR/CRP are in normal range BECAUSE of the pred? That is the whole point of pred in PMR/GCA: to manage the inflammation, that is all it does. Obviously you DO need to keep trying small reductions to see if the PMR has gone away  or whether removal of the pred allows the inflammation to develop again but you cannot say it on the basis of "your blood tests are normal".

As Lodger says, there are probably far more people who get through PMR in 2 years than we know about - by definition people without problems don't figure highly on forums. However, there was one review paper that reckoned that about a quarter are off pred in under 2 years but are at a higher risk of relapse than others. German textbooks are quite clear: an average of 5 years but may be much longer in some patients. Why doctors are so fixated on the 2 year figure I have no idea since definitely the majority are more than 2 years.

Didn`t help that Doc Martin quoted it to his aunt in the programme this week! (2 years on steroids) if only it was that simple and straightforwrd....

All they have to say is "probably at least..." and not suggest that it will be a steady reduction to zero and off. 

We asked them why they say it - it's to avoid depressing the patient they claim. But we then have to present the reality to patients who after a time are still at 10mg and being made to feel it is their fault or who are on a low dose but unable to get further after 3 or 4 years - or longer. Some of these patients are in a real tiswas about it and really getting depressed. I'm on 4mg, inflammation well managed and able to do most things - and my GP thinks that is fine, even after 3 1/2 years since the last major flare and starting on this in a different way. I am so lucky.

Thanks for your reply.  I think I'm going to make another appointment to see my GP, take the info on BSR guidlines and hope she takes notice. 

I'm lucky in that I don't have the GCA symptoms now but am left with such an ache in my hips that it is difficult to walk any distance and my shoulders are painful especially in the morning. 

I am dreading having to take the steroids again as they caused me so many side effects (gastritis, gall bladder infections,) and now my hair is falling out ....where will it all end!!

It`s quality not quantity isn`t it every time....This is what I find the most frustrating as I`ve said in the past...we`re all treated so different with our Rheumy`s, that patients feel it`s their fault, when they then cannot reduce how they want us to....I am wise to mine now, and she to me!...I saw what she wrote to my doctor,,,"this patient want`s to reduce as slow as she want`s" well she is!  I will dabble with my reduction to suit me and my pain...after all Oncologists don`t give definites to patients with cancer and chemo...they should give us more credit!!

Yes, we would all like to be off steroids and healthy...without the weight gain, hairloss, and other side affects, but we have to do what we have to do, to get through our days!....

Yes - what use is another 25 years without (for example) osteoporosis if I'm unable to move without pain that no painkiller will touch which in itself is a risk factor for bone density loss? And don't tell me that paracetamol is safe to use in quantity for years because it isn't and is useless anyway. Brufen might help - but will rot the lining of my stomach and I could end up in A&E with a gastric bleed like one PMR friend. I've had PMR for well over 10 years - no real sign of it going last time I attempted to go to 3mg. I'd have been one of those using a mobility scooter - in my late 50s.