Well after being diagnosed with GCA several months ago I had my first visit to a Rheumatologist. Well I will admit to feeling very anxious but I had first class treatment - spoke with the Registrar who took all the details regarding my medical history and then me gave a thorough examination. She seemed to ask all the right questions and was very understanding. She then introduced me to the doctor who also gave me a thorough examination and again asked many questions.
In summary he has given me a planned schedule for reducing the preds, along with blood test requests and an emergency number to call if I have a flare-up or any concerns when reducing the preds, strict instructions on what to do if the flare-up occurs out-of-hours and reassurance that the A & E Department will deal with this as an emergency and that they will call him. He organised for me to have a chest x-ray and a multitude of blood tests today. On top of that he will refer me so that I can have a belated biopsy and also a referral to a neurologist.
All in all both of them made me feel like a person not a number and that they are concerned for me - they want to try and reach a firm diagnosis of GCA - get me off the preds - and both said that even if I haven't got GCA I can remain on the Support Group and help others who have this terrible thing!
I feel a lot more positive now. Tired after being prodded and poked about but at least I feel that I am in the right hands. If only this had happened months ago.
Margaret, so glad all went well and you now feel positive and well supported. After what you have been through, you really deserve good treatment. When doctors are at their best it takes away so much stress.
Hi, this made interesting reading, I too have had GCA for several months but am treated solely by my GP. Monthly blood tests, monthly visits to GP, reducing pred (with caution) and all going well, but referral to anyone else has never been mentioned, is this normal or possibly because treatment going ok so GP does not feel it is necessary? Find this site really helpful.
Thanks Pat for your kind comments.
Pamb - Have you had a biopsy and what are your blood count readings? The Rheumatologist explained to me that a definite diagnosis of GCA is critical - so often GPs rightly put suspected cases of GCA straight onto preds with referral to a rheumy (this should be an immediate referral) thereby condemning the patient to approx 2 years of pred treatment with all the inherent side effects. My feelings and these are just my feelings - a referral to a rheumy is desirable as they can manage the condition, help with research, and give you the support that you need. However, I know that it is difficult when your GP has been so good to "demand" a referral and also it depends where you live as to the standard of care of a rheumy. Perhaps the helpline can give you more insight into the advantages and disadvantages of a referral to a rheumy. All in all I am glad that I insisted as my rheumy's are excellent and attend all Support Group meetings. Good luck with everything. Remember you are not alone!
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