I'm very confused about what is happening and would appreciate any advice.
I've just had to change GP practice and my new GP is absolutely adamant that I don't have PMR and his reason is because I have always been able to lift my arms above my head. He wants me off prednisolone asap. He says my raised CRP of 36 in October isn't that raised and is due to 2 different conditions of right tennis elbow and left hip bursitis. I have never been seen this has all been diagnosed over the phone.
I have gone from 15mg 3.5 weeks ago to last 2 days on 7.5mg.
I have a banging headache but have suffered with headaches on/off since starting the pred.
Since the reduction I've got lower back pain that is very uncomfortable and not helped by paracetamol.
I spoke to my GP on Monday to say I was struggling with various aches and pains and he said it was due to pred withdrawal and to persevere. I did request blood tests which I had yesterday CRP ESR CK FBC and he has agreed to email the rheumatologist for advice.
I feeling a bit shell shocked after trying very hard to get my head around the fact that I've got PMR and now this..........
Written by
Labrador3
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He is talking absolute rubbish - PMR does not always affect both shoulder and hip girdles and to make a diagnosis in a patient HE did not see is appalling especially if he hasn't actually seen you in person. Very unprofessional. However - 2 months ago YOU didn't want it to be PMR! May I ask why you have had to change practices? And have you seen a rheumy at all? Or will this doctor be telling HIS version of the story ...
Do you know what the range is for your lab's CRP testing? 36 sounds pretty high to me - but are you sure it is CRP and not ESR?
Morning.Thank you for a quick reply. You are right I never wanted to have PMR but I also wanted to feel better and I admit I have struggled with the diagnosis and side effects of the steroids.
I have had to change GP practices because next month I start working for the practice I was registered with, it's not ethical to be registered and work in the same practice.
My labs range for CRP is <11 is normal. Didn't have ESR on diagnosis but with my last practice I had an ESR in November because of headaches and it was normal.
Sorry Mr GP but if 11 is top of the normal range, then 36 is pretty raised - more than 3x top of range.
Unless you have access to another GP - and that is going to be difficult to manage in the days of telephone consultations - I'm not sure what to suggest other than a private appt with a rheumy. I doubt that tennis elbow and hip bursitis would raise the CRP that much - but anyway, bursitis is also part of PMR.
I don't know where you are but Rod Hughes in Chertsey has been doing private f2f work almost all the way through, I'm sure there are others. Given the history it would probably be an idea - your age isn't a problem but the other symptoms are a bit neither fish nor flesh as we say here. They could well be PMR and we know they are responsive to pred - but there are other things too. However - if you know pred works, what is he offering as an option for pain relief?
Shame some doctors don't accept that!! I found ibuprofen and voltaren gel might take the edge off - especially the extra sore shins when skiing - but it wasn't much of an answer to PMR! Nothing was except pred ...
Hi Labrador3, I have always been able to lift my arms above my head no problem, my CRP was never higher than 25, and I was recovering from knee surgery at the time, still, PET CT scan showed that I did have PRM. In my case, one of the recurring symptoms of prednisolone withdrawal is a headache, but it responds well to paracetamol and doesn't last very long. Admittedly, I have never attempted such as heroic act as demonstrated by your current taper.
I am not saying that your GP is wrong in insisting that you don't have PMR, I just don't fully understand why he is making that assertion.
I have to admit to being in favour of reducing the steroids and not succumbing to the temptation of increasing the dose at the slightest discomfort, but I am struggling to understand what he is trying to achieve here. I do hope you get to the bottom of this and a rheumatologist will show more compassion than your GP. Good luck.
Thank you for your reassuring reply, yesterday was a bad day and I could hardly move. I went back to 10mg pred yesterday and today and so far much easier although pain hasn't gone is manageable. I have never been offered a scan.....
I think I was lucky that my rheumatologist works at a hospital that has a PET scan and she tends to refer all her suspected-PMR patients for a scan. Prior to this, I was tested for everything under the sun by my private rheumatologist who diagnosed it by eliminating all other possibilities, but it was so much better not only to have a definitive diagnosis but also to be told that there were no signs of LVV or GCA. I was obviously more comfortable with the treatment which I knew was appropriate and necessary. Living with pain is very distracting and limiting, so taking steroids seemed like a lesser evil.
Before I started the steroid treatment I was taking Naproxen for a couple of months and it definitely took the edge of my pain, but it never managed to get on top of it completely. NSAIDs are not harmless either, so I would rather be on my current dose of steroids (4.5mg). My goal has always been to get to as low a dose as possible to minimise the unpleasant side-effects and then have a slow and steady reduction which allows me to live a full life.
I don't know what I would do in your situation, but taking initiative to alleviate the unnecessary pain seems like the right thing to do.
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