Having read of so many negative experiences with GPS and Rheumatologists, many of which left me seething at the sheer arrogance of those in whose care we find ourselves, I have to report a good news story.
I was diagnosed with PMR in April 17 by my GP when I first presented with symptoms of painful stiff arms neck and glutes. I was put on 15 mgs pred which had little effect. It was immediately upped to 20 which almost immediately made me feel like a new born lamb. I’ve always had a good relationship with my GP but he wanted to refer me to a Rheumy to make sure it wasn’t more complicated. My Rheumatologist is also a kind understanding man who listens. To date , I’m making good progress. I had a lot of trouble getting down past 17.5 and was started very reluctantly on MTX. It worked though and I’m now down to 6.5. At my last visit, last week, he said to continue the reduction at the rate of 1mg every month to six weeks. But, he said, if we need to go slower we will. We’ll judge it by how I feel.
I just feel very lucky to have got one of the good ones.
Written by
GerriMc
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I think the problem is for GPs in particular they are getting more stressed and less time with each patient, and the newly qualified doctors don’t want to come into general practice.
My GP who hasn’t got long until retirement is very pessimistic about things - I think they’ve had GP vacancies in our surgery for a long time, and it’s not as if it’s city centre, it’s 2 surgeries, one in small town, other in country, so not exactly rat race! Perhaps not interesting enough for some! Plus, if they do get younger GPs it’s seems to be more females and they only want to do part time because of family commitments.
I think the GP system here in Ireland is s bit different to the UK. They’re small, usually one doctor units, although group practice clinics are starting to appear. You can go to whatever GP you like and change if one doesn’t suit. I can ring for an appointment and never have to wait more than 24 hours.
My GP is also reaching retirement and I dread having to see someone else. He’s always been good, particularly when my kids were small. Ah well, I suppose we all have to move on.
When I first moved to my current address 7 years ago, I thought I'd really struck lucky with my G.P. practice. There were 6 full-time doctors and it was possible to make an appointment within a couple of days. Then very sadly one of the partners was knocked off his bike and killed, and another doctor also left. So they are down to 4 and it is very difficult to get an appointment in under a fortnight. They do see 'walk-ins' for an hour each morning, but you have to go through the third degree with the receptionist to be assessed as an emergency which isn't very acceptable as regards privacy. They only seem to get a locum when one of the regulars is on holiday. If they are advertising for new permanent doctors, they're obviously not having any luck. The fact that this is north London and a very expensive area for housing might be a contributory reason. I'm lucky enough to have a beautiful Housing Association flat which would cost 3-4 times my rent on the private market. I wouldn't complain except that my diagnosis of GCA and PMR was delayed by nearly 4 months despite my blood test results indicating the problems pretty clearly. I feel grateful every day that my eyesight wasn't affected. I think my doctor was probably less vigilant than he should have been because of overwork and fatigue.
I'm sure I'm not the only one whose sight has been put at risk by a combination of a lack of vigilance and a lack of knowledge. Unfortunately others have been left blind or partially sighted as a result.
That's great. The rheumy I saw last time mAde same comment. I am at 9mg and on mycophenolate. I seem to be having trouble at 9mg with thigh pain. Only about 10days on 9mg so will see what develops.
That sounds pretty perfect to me. Did you have many side effects from the MTX? I suspect it’s looming for me and I don’t really understand how it may help. I was diagnosed with PMR in March 2016 and am on the same dose as you and struggling a bit.
Jane, I was very worried about taking MTX given what I’d read about it. The only significant side effect was some hair loss. That seems to have settled down. I had started taking it in the morning one day a week and was feeling very tired that day but a friend who’s daughter takes it for Crohns, recommended taking it before bed and now I just sleep through the worst of it and it really doesn’t bother me. I think it works by further suppressing the immune response to lower the inflammation.
Yes - but is the quite ill the PMR/GCA or is the adrenal function lagging behind? It isn't JUST whether your adrenal glands CAN, it is whether they ARE.
And if that is the case - all the mtx in the world isn't going to answer that problem.
Thanks PMRPro, I almost welcome real identifiable PMR pain. This is like a chronic, exhausting virus. I am seeing Sarah Mackie this month, she wanted to wait until I was on 4 mgs before they did a Synacthen Test, for a clearer result. That might as well be the moon. I’ve lost the plot. After a pretty text book 2 years. I fit the profile for Psoriatic Arthritis too. You were the first to suggest that. In Aus my feet looked scary, red ,dry peeling and swollen. My fingers hurt when I put lotion on my body - that movement.My dr son in law had to put his nothing to worry about face on.
Trouble is when we see a doctor we need to prioritise what we tell them or they get confused ( bless) and no wonder. Should it be my exhaustion, my strained eyes, my knees, my digestive system, my feet, my ankles, constant headache, breathlessness, blocked nose, dry mouth, my inability to get below 7 mgs, my low mood?
Janice, once I started on 20mg pred, the pain improved almost immediately. The MTX worked differently. I was stuck on 17.5 mgs pred which was ok at controlling the pain but each time I tried to reduce by even half a mg, the pain and stiffness returned with a vengeance and I started to experience tenderness in my temples. Then I’d go back to 17.5 and be ok again. When I started on MTX, after about a month (4 weekly doses) I tried reducing again and was able to get to 15 in a couple of months. Each reduction brings a little pain for a couple of days but it passes and the tenderness in my head is pretty much gone.
I have regular blood tests which he plots on a graph and the drop in inflammation markers following starting on MTX was significant.
Hiya, where do you live and can I come and stay so I can see your wonderful GP and Rheumy? Only kidding, of course, but you are indeed fortunate. May you continue to benefit and do as well as you are doing now.
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Too Soon??
First visit to rheumatologist, fibromyalgia confirmed as well as PMR!
Know a good Rheumy in York or EA/London area?
Follow up from Dr Hughes appointment 
GCA flare, a lesson learnt 
