Hello! My gp yesterday insisted I should carry on at 15mgs pred. for my GLC and Polymyalgia, so will see and go upa titchy bit if the pain continues. What I would like to
know is, should I be seeing a rheumatologist?? on NHS or privately if you think necessary???
Hello Isabella - Welcome, firstly I think you mean GCA, Giant Cell Arteritis.
I shall be interested to see what the others think, quite a few have seen Rheumy's with varying degrees of success. I have never seen a Rheumy but as I was getting on ok I didn't ask. See what the others say and keep in touch with this site it will be a good support. My thoughts, and I consider myself a learner, is that 15mg is too low for GCA that is prob. Why you are getting pain, but wait and see for the other replies.
Hi Isabella,
Just read your first post where most of us agreed that your GP dropped you too quickly from 20mg to 15mg. So am sorry you didn't get a better response from him yesterday.
The majority of people do see a Rheumy, although I saw one once, six months after diagnosis, and he wasn't really interested in my GCA, apart from saying the reduction agreed with my GP was okay, and that he could give me an injection for my arthritic shoulder! So I didn't bother again.
I think it would be sensible for you to request an appointment with Rheumy as your GP doesn't appear to be very sympathic about your situation.
CelticxDorset ladyx and Bettyx Thankyou so much for your replies! I am in
the South West I could go to Plymouth,Exeter or Torbay nhs or privately if anyone knows someone herebut would much prefer NHS of course. Thankyou!!
Isabella, everyone on steroids for Giant Cell Arteritis (GCA) should be under the care of a good rheumatologist. One leading professor of rheumatology with a special interest in PMR/GCA says that in his opinion even those with PMR should ideally have at least once appointment with a rheumatologist. Whether you see one privately or on the NHS is a matter of personal choice. Certainly, it can be much quicker to get a private appointment, sometimes within a few days, whereas NHS rheumy appointments can take anything from 6 weeks to several months. If you let us know roughly whereabouts in the country you are (if in the UK that is) someone might be able to point you in the direction of a good rheumy.
However, it does sound as though you are simply not on a sufficient dose of steroid to control your level of inflammation at present. A diagnosis of GCA needs a steroid starting dose of at least 40mg and remaining at that dose for 4-6 weeks until the inflammation/symptoms have improved, before embarking on small, staged decrements thereafter as symptoms/blood tests allow.
Does your GP think you have GCA? If he does he should refer you as an emergency (not just urgently) to a rheumatologist - he does not have access to the tests that may be needed and neither does he have the specialist knowledge. Most GPs would be capable of managing PMR - but PMR doesn't have either the long or short term risks that GCA does. It is also likely that if it is really GCA you would need rather more than 15mg - GCA is generally managed with at the very least 40mg to start with. Once you have a proper diagnosis and "just" require to reduce that is a different matter if you have a good GP.
PMRpro, yes I think he does! I am off to the south of Spain this weekend for afew weeks so may find someone there, if not will ask my gp here to!
Don't hesitate to go to a hospital in Spain if you have anything even vaguely resembling GCA symptoms. They SHOULD be quite good there - they have a very big research group in Spain. Don't ask me why when the further south you go in Europe the lower the rate of PMR and gCA!
PMRpro thats good news, I will enquire, just received the recommended paperback today so will read it and find out what the GCA symptoms are and ask the docs there about a good rheumatologist. I will be back in June so perhaps you will know of a good rheumatologist around the southwest. I hope you are having a nice life, you deserve it with all the help and care you give everyone on here!! xx
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