GCA update

[bobless]

Hi all just a update i have received a reply from the roumy hot clinic it on ly took a fortnight to reply !!! . The consultant sent a letter to my GP stating that he felt ESR being only slightly raised AT 33 he felt with the 60 mg pred tapering should show improvement are he could send me to vascular clinic which may take a while so after considering everything i have decided to raid my piggy bank and made a private consultancy with a chap Called DR Chattopadhyay a well renowned in his field and im in the N/W his clinic is at Blackpool i was told about him by the lady who runs the support group in this area . To my mind it appears that a lot of you are having to fight to get a diagnosis and taking high doses of preds and the affects on our bodies is not good without a proper investigation i understand that the clinics are overrun to capacity however i feel that being left in limbo on pure guesswork and hunches without even seeing me is no good so im off to Blackpool and i would like to thank you all for for your information and good advise it has helped me greatly

[Celtic PMRGCAuk volunteer]

Bob, why oh why has the rheumy not arranged an immediate temple artery biopsy? Although in a few cases it can give a false negative result because the large cells they are looking for can escape the tiny portion of artery removed, at least if large cells are discovered then you will have confirmation of GCA. Ideally, the biopsy needs to be carried out within a week of starting steroids; however, it may remain positive for 2-6 weeks following initiation of steroids (see the BSR guidelines for the management of GCA recommended to you a few days ago).

In the position of consultant rheumatologist, he should be aware that it is possible to have Giant Cell Arteritis without a raised ESR. In any case, the CRP (C-reactive protein) test is generally considered to be a more specific marker of inflammation than ESR.

I do hope you manage to get an early appointment at the vascular clinic and that they will be more proactive. Meanwhile, if you have any unusual problems with your vision, take yourself straight to A&E.

[bobless in reply to Celtic]

Hi Celtic my gp ordered a biopsy from Preston Neuro got when he first put me on preds same day that was 3 weeks ago got letter this week for app this week for Wait for it 21st september 3 days after starting me on 60mg preds i saw doc again he phoned hotline to rheumy which is fast track got reply 2 weeks later from them stating how busy they are and he did not think it was GCA t/a as my esa is it called was only slightly raised 33 and then said that my gp could contact vascular clinic I have all the symtoms and pains of GCA t/a and now the affects of treatment with preds and im not happy at all with this i feel let down my Gp has done everything in his capacity but im streesed to hell and back could crush a grape LOL with all this i need to know whats going on with this im climbing the walls at moment not sleeping hardly getting a couple of hours usualy at 4am till 6am for days i cant think straight very confused and thats why im paying to see a consultant but not the 1 that dismissed me out of hand i have a appointment privately in on wednesday next week and i hope i can make some progress from there cos i cannot afford private fees but will pay for initial consultation the chap im going to see comes highly recommended all i want is a diagnosis and then to be treated for it whatever it is that is causing all this rather than gueswork . IM sorry this is a late reply but usualy replies come to my email but just found them while browsing on here

[Celtic PMRGCAuk volunteer in reply to bobless]

Bob, it really beggars belief that a consultant should decide that you do not have GCA because your ESR is only "slightly raised at 33"......without ever having seen you!

Lots of good luck wishes for the appointment with your new consultant on Wednesday, and do come back and let us know how you get on.

[bobless in reply to Celtic]

i agree im not happy with him either nor am i happy with the other hospital that my gp sent to for biopsy of temple got that through yesterday its for 22nd september its unreal crazy even . All i want is to know what is wrong with me if its GCA or something else im taking high doses pred stil got the symptoms and climbing the walls we stress its 2am in morning icant sleep its been that way for days probaly the preds affecting me iwill let you know how i get on

[jinasc]

bobless, you have been steered to a very good Consultant. Happy that you found Ann who runs the North West Support Group.

[bobless in reply to jinasc]

Hi Sambucca yes thankyou Ann is a lovely lady an angel and has spoken to me at long length on phone and helped me greatly she is a star i have a appointment next wednesday 8th July at blackpool

[PMRandRA in reply to bobless]

And then sue the Docs and Rheumys for nearly messing up your life!