If you have PMR, who is treating you?: - PMRGCAuk
If you have PMR, who is treating you?
Why are some cases referred to a consultant rheumatologist and others are not? It seems a little unfair!
HI
i agree., 20 years ago I had it and was sent to a rheumatology hospital and saw a rheumatologist first every 2 week , later every 4 then every 6 and so on for 2 years.
We have moved and I now have a new Gp. 2 years ago I went down again with PMRGC and have asked on numerous time if i should see a rheumatologist to be told that ....we don't do that nowadays...even though I have had the most horrendous side effects come down from 65mg of steroids to the present 5mg. At least I am feeling much better this last few weeks.
All the best
Grace
Hi Grace,
The "we" part would have worried me, but, as I have said before, it's often the luck of the draw when it comes to GPs versus Specialists. I have been very lucky, I'm sure, but I often have wondered if it is because I am very mouthy and persistent in my approach to the medical profession. This is my nature when it come to things that are really important to me because I watched, as my mother and father went under and died because they accepted what doctors told them. They both died because cancer was diagnosed too late. It has left me deeply scarred, as you can imagine. At the time, I could do nothing. Only afterwards did I know the truth. Too late.
I hope with all of my heart that you are through the worst of this illness and that you have not been too damaged by all the pred you have taken. Many congratulations on the massive drop in steroids. You have great courage, I'm sure. Take it real easy now.
Pats.
have seen a rheumatologist but he said yes I had PMR and just see the GP
Hi JC,
I guess it's the luck of the draw. I'm really grateful that I have a rheumy, but saying that there are GPs who know exactly how to treat PMR. I know because I have met two who were brilliant. Unfortunately, my own GP was not good, but luckilly I had already been referred.
Pats
I have monthly ESR and CRP tests from my GP. Other treatment is from a chiropracter and herbalist.
I began with pain seemingly everywhere and an ESR rate which went from 6 to 97. GP arranged a hurried hospital admission to have me checked out.. They kept me a couple of nights and said possibly Polymyalgia and performed many tests. Back home I kept badgering the GP practice as I felt so, so ill - pain, temperature, sweats, constant dull headache, lay on the sofa all day with exhaustion. Finally was seen, through pestering the practice, by 3 different GP's on 3 consecutive days until the third one said 'lets try steroid'. Diagnosis made. She referred me to a hospital rheumatologist who arranged neck x-ray and bone scan and to the physio for exercises - which I have been unable to perform. If I do, I get really bad pain the next day, so I leave them out pro tem. I am OK with my GP but have appreciated the Rheumatologist, as other things like the physio have been arranged by him.
I have been treated by my GP for 3 years and only just referred to the Hospital, but not to a rheumatologist, just a consultant in Care of the Elderly. Should I be asking to see a rheumotologist?
I have had PMR for three and a half years and am currently on 5mg of steroids. I have not been seen by a Rheumatologist since the first year. My GP who has been far from supportive retired recently and I now have a new GP. I saw him this week as I have not been at well for a while but did not see my Dr for the reasons stated above. I asked for asked for an ESR blood test (my old GP said regular testing was not necessary) and it was 12. showing I do not at the moment have PMR and have been needlessly taking steroids for goodness knows how long for nothing. I have osteo- arthritis which was made worse with the PMR. I am now starting to wean myself off the steroids although my new GP said they has helped my pain - but at what cost with all the side effects.
I have had PMR/GCA for two and half years, and was diagnosed in Spain when I woke one morning and found I had lost the sight in my left eye. When I returned to the UK I asked my GP to be referred to a Rheumatologist and was told there was a waiting list of 3 months. I asked to see one privately which I have done ever since, every month in the beginning and now only every three months. He has been wonderful giving me tremendous support and help, and has helped me through some pretty tough times. I am now down to 4 mg after 60 mg when returning from Spain, where the treatment was excellent.
Hi BB,
If I prove to be out of my depths here then forgive me. I have had PMR for 19 months now. I have had several blood tests, none positive, and yet two specialists have said I have PMR. The steroids have caused problems, but without them I would be a crippled wreck and most of the time, bed-ridden. I have had all the physical symptoms of PMR. The first rheumy I saw said that diagnosis is no longer reliant on blood tests , but on symptoms and the rapid response to steroids. On 30mg of pred I was pain free in 3 hours. I guess it can't get more rapid than that.
Your lack of a positive results in your tests does not mean you are free from PMR. Unfortunately, you also have osteo which will complicate a correct diagnosis and the steroids will have helped to combat this illness.
I really hope you are now free from PMR, but look out for a return of symptoms.
Pats
Hi Hwigston,
All I can say is that sometimes it's hard to believe what folks have gone through when suffering from this illness. Surely, your blindness should have fast tracked you to a specialist in this country. It's scarey to think that some of us could have been in your place.
Pats
Hi Pats. I had all the signs of GCA, severe claudication of the jaw, I could hardly eat anything it was so painful, ESR of 126, CRP of 65, fever etc etc. I asked my GP whether it could be PMR but he wasn't sure, but to go on my holiday and enjoy the sun. One week into my holiday I woke up and was blind in my left eye. On my return he admitted that he did not recognise the symptoms, despite the fact that a few weeks prior to my visit he had been on a PMR/GCA seminar in London!!
What can I say. Nothing! I can't even imagine how you must feel. I have just given a new member advice on what to do if she still has symptoms of GCA not under control - go to A&E pronto. I thought of you as I wrote it.
Pats.
Neurologist and GP
Acupuncturist
My GP diagnosed PMR and prescribed steroids, I have been referred to a Specialist, awaiting appointment in October.
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