Overall, how satisfied are you with your treatmen... - PMRGCAuk
GPs do not know enough about the illness themselves so they act as if they are superior and tell us what to do without explanation. The drug regime with steroids is not monitored sufficiently. The risks are not explained fully. The reasoning is not explained fully.
I agree with you, JC. I was diagnosed very efficiently by my GP. But what has been totally confusing are the various effects of the steroids and how they affect each patient differently. So you don't always know what symptoms are caused by the temporal arteritis and what symptoms are from the steroids. But I am learning as fast as I can! This web page has been a comfort.
I agree with JC1950 completely.
One thing that those of us with longterm PMR and GCA know is that they are fluid and ever changing diseases, and very few of us fit into the textbook scenario that GP's learn from. They do not have the experience to understand the diseases properly, they try to fit people into "slots". I've heard so many horror stories. I urge everyone with these diseases to find a good Rheumatologist who listens to patients. Mine trusts me to lower and raise the prednisone as needed, it's the only thing that works on this rollercoaster that we are all on.Nobody knows our bodies like we do.
I agree with the other comments above, although the guidelines state that immediate treatment is required to prevent loss of sight - many GPS feel that this treatment only requires high doses of steroids. Blood tests are not taken regularly and the need to refer to a rheumatologist is not thought to be of benefit. Not sure that hospitals are aware of urgency with GCA either.
I also agree. GCA is, in medical terms, such a rare occurrece that it is simply not recognised by the majority of GPs. I must have given pints of blood for testing because I'd got 'very high markers' and then sent for various scans, investigations etc. but not on my head, which was my constant source of complaint. Bright red bloodshot eyes for months with double vision and other visual disturbances, deafness, headaches and neck pain. The only thing that helped slightly was to sleep sitting up, which I'm still doing nearly two years on. That really puzzled my GP! Eventually, steroids were suggested which I was very reluctant to embark on I admit but they were like a magic potion from day one. Yes, they only alleviate some of the symtoms and are not a cure (and of course bring their own disadvantages) but 40 mgs transformed me. Not out of the woods yet but coming up to my second anniversary so am hoping it is rapidly declining. I hope I haven't depressed those of you who have only recently been diagnosed.
Incidentally, I did have a bout of it about seven years ago which, after numerous tests again, was never diagnosed. It spontaneously cleared up over a matter of weeks (having had it for months) and I have since read this can happen within the first year. If it goes beyond a year it will last for much longer.
I was very glad to see the article in this month's Saga - the only print one I have seen and I read a lot. The more publicity it gets the better, particularly if it prevents even one person losing their sight because of it.
Best wishes to all.
Mega
I wouls say that it was/is my GP practice who have been very well informed and thorough in my diagnoses and treatment of pmr/gca. GCA was diagnosed at my first presentation at GP with headache, fever, no appetite, muscle pain and general malaise. It was on referral to hospital that was the trouble. GP wanted biopsy done immediately, but could not refer direct for that, it had to come from a rhematology consultant, and they wouldn't see me for 5 weeks (urgent referral), by which time it was too late for the biopsy as I had been started on 40mg straight away. To me it seems that the hospital is just a formality, and the real care and expertise is my local doctor. My rheumy dept. just don't seem interested in the gca and only harp on about quick reduction and wan me t to be on methotrexate, AA etc....which I don't need! Think they seem to want to treat pmr/gca like rhematoid arthritis, not as a separate disease with different progression. Look forward to fast track referral for biopsy to be routine. Care at ophthalmology dept for related glaucoma has been excellent.
Fairly satisfied with my treatment ONCE DIAGNOSED!
I presented with severe head and jaw pain, vomiting and weight loss. It took 4 different GPs over a period of as many weeks to recognise it following my pharmacist's suggestion of possible GCA.
The pharmacist and I had put our heads together over her computer and decided that all my undiagnosed body pain of the previous year which saw me bedbound for many months linked up with my present symptoms to suggest the possibility of PMR and GCA. Wonderful pharmacist (sadly now retired) c--p doctors (sorry!).
I was not diagnosed correctly nor in time to recognise GCA, so lost the vision in one eye!
After Eye Hospital found the Arteritis, treatment has been satisfactory and to plan. No major upsets or alterations, however we all have to live with the side-effects of the steroids. This site has explained some of those & helped cope with them, for which thanks. My posts on DVLA will show how long it can take to get driving again [11 months in my case]. raymck
