I was originally diagnosed with PMR in May 2021 by a very helpful GP. All was well for the first few months but on reducing I hit a wall at 8mgs. When I went to see GP I was disappointed that she had moved on but not particularly worried. How wrong I was. Over the next few months I was told to increase pred by roughly 1 -2mgs at a time. With the knowledge I now have I know that this was not enough. Fast forward to Jan 2022 and I was referred to a rheumatologist. A few weeks later I had a phone call from the senior partner in my medical centre who said ‘ the rheumatologist has stated that there is no sign of PMR because there are no inflammatory markers, +/- fibromyalgia and what is your plan to get off steroids’. I was completely abandoned and he obviously wasn’t interested. The diagnosis was done by post! Forgot to say that my bloods have been completely normal all through this but I know, through this forum, that this does happen. To cut a long story short, I struggled but managed to get off steroids and in June last year had a hip replacement. My recovery was going well until 7 weeks post op I went to bed feeling reasonable well but next morning I couldn’t get out of bed. I struggled along until I couldn’t stand it any longer and went to see a GP. She was lovely and agreed that this was PMR and gave me a week of 15mgs of pred. After a few days I had a new life. The reaction to pred was wonderful. When I returned for a review she told me that the senior partner said that I did not have PMR because of previous rheumatologist report and had to reduce to zero pred over the next 3 weeks. That was it!. I had had enough. I asked the GP ( who is a locum and I felt was on my side) to refer me once again. I got a letter stating that I it was going to take some months before I was seen. By this time the pain was horrendous and I was having trouble walking so I did some investigating and found a private rheumatologist who had PMR as one of his specialities. I saw him a couple of days ago and once he had read the GP referral he was obviously pretty disgusted at the previous report and asked me where I had seen the NHS rheumatologist. He was even more disgusted when I told him it was all done by post. In his words ‘ I have a classic case of PMR and I was correct that up to 20% of sufferers have normal bloods throughout’. Hallelujah someone finally listened. He even told me that I should have the control of my pred does because I obviously knew my body. I have seen the GP who has quietly confirmed that she agreed with me but her hands were tied and we’re awaiting the consultants report and I can once again start pred. He has suggested to try 10mgs for 5 weeks and if that doesn’t do the trick a I can go to 15mgs for 4 weeks then start a very slow taper. He said that try to aim for getting to 5 mgs eventually . The moral of this saga is,if possible, don’t ever give in and try to find someone who specialises in PMR although I know that this is not easy. I now feel in a strong position for when the senior GP partner starts his nonsense. I probably couldn’t have done this without the knowledge I have gained from this forum and would like to thank everyone for all the invaluable information available. Onwards with positivity.
Struggling to get a definite diagnosis: I was... - PMRGCAuk
Struggling to get a definite diagnosis
What a Horlicks 😳 .. or similar…
Glad you’ve finally got done someone sensible by your side -but it really shouldn’t be that difficult.
Hope all goes well.
well handled Paul76.
Well done for persevering. What a difference it makes. Hopefully, things will be much better for you now.
Another horror story for Prof Mackie! But what a load of balony - the response from the original rheumatologist is hardly applicable over a year later and anyway, if you were on pred, you'd HOPE the markers were in range!
Who is this rheumy with the right idea? He needs to be added to our list of "worth a journey" doctors!
Hi piglette, this marvellous rheumie is Dr Sandeep Bawa and he can be found at the Nuffield hospital in the west of Glasgow. He inferred that I shouldn’t have had to go to these lengths and unfortunately some GPs don’t understand PMR. I think what is more worrying is that the original rheumatologist seems to think that you can’t have PMR with normal bloods!
You are right you have to be pro active or you have had it. I feel so sorry for people with things like cancer who seem to be treated just as badly.
oh, yet another person told by rheumy that they don’t have PMR & to get off pred immediately!! Welcome to my world!! Sorry it happened to you, too. Wondering if some ‘edict’ has gone round the rheumy departments to remove the one drug that gives PMR patients life & hope!!
I'm beginning to wonder ...
Didn’t we have this discussion a few months ago? If I recall GPs were directed to look at “overprescribing” certain drugs -steroids being one of them.
At least one person had issues with staff when asking for repeat prescription-and had to explain why steroids cannot be stopped. Think it was resolved when receptionist was advised the difference of long term prescriptions for PMR etc as opposed to short term for acute issues.
Similar yes - though in that case it was the receptionist at fault. But too many doctors believe the 2 year PMR myth and possibly decide a patient on pred must have recovered and just isn't trying hard enough to get off pred since we all like it so much! Without any awareness, it seems, of the potential risks and problems.
Well done for your preseverence. I am waiting for the report to my doctor from the Rheumatologist in Hastings who told me last week that I probably never had PMR when it was diagnosed in 2017. The young registrar who referred me seems to be on my side and has agreed that a second opinion is appropriate but I have yet to see if my own more senior doctor concurs.
Meanwhile I have an appointment with Professor Rod Hughes next month for clarification but I would say it is just so exhausting and distressing to deal with on top of dealing with the condition itself and the management of the steroid dose.
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