Posted , 9 users are following.
Has anyone experienced any treatment for gca other than prednisolone? Are there any specialist consultants in this field in the UK? Has anyone been referred to one?
1 like, 14 replies
Posted , 9 users are following.
Has anyone experienced any treatment for gca other than prednisolone? Are there any specialist consultants in this field in the UK? Has anyone been referred to one?
1 like, 14 replies
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ptolemy audrey25251
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paula63201 audrey25251
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Kipppers7 audrey25251
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lodgerUK_NE audrey25251
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Prednisolone stands between you losing your sight, either total or partial and once that has gone, it is gone.
Whereabouts are you looking to se a specialist in the UK. Every major hospital has Consultant Rheumatologists and Vasculitis Consultants. Both deal with GCA. But Rheumatoligists are the Consultants whom you will be referred to.
Anyone with suspected GCA is immediately referred to a Consultant for urgnet treatment because of the danger of sight loss.
audrey25251
Posted
I went blind in one eye some fifteen years ago, and was referred to Moorfield Hospital who said they could do nothing for me. GCA was not mentioned. Then about 3 years ago I developed PMR and with it GCA. The sight in my remaining eye deteriorated, I went hard of hearing, and it was affecting my heart. I was referred to a rheumotologist and an opthalmologist, and put on a mega steroid programme (60 mg). Over the years I have reduced to 5 mg. PMR seems to be under control, but what worries me is that the little sight I have in my one eye is diminishing. Also my heart is badly affected. I see a rhemotologist every six months, and I am awaiting an appointment at a heart clinic.
I really just wanted to hear if anyone had any experience of anything other than steroids. I thought I remembered reading somewhere about a specialist clinic in Bristol dealing exclusively with GCA - obviously just in my dreams!
Anhaga audrey25251
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lodgerUK_NE audrey25251
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Professor Lugmani Oxford.
google them both.
audrey25251 lodgerUK_NE
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Willowherb audrey25251
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audrey25251 Willowherb
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Susanne_M_UK audrey25251
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I've had GCA for about 20 months, and before that, PMR for 4 years. Steroids seem to be the only available option unfortunately. I've just come off Methotrexate, which is a steroid sparing drug, and if and when it works, it will allow you to reduce the prednisolone quicker. It didn't work for me, as the side effects were far too awful.
I see a rheumatologist for the GCA, as I did with PMR. Unfortunately, even rheumatologists don't all come across patients with GCA all that often, so they are not necessarily up to speed with new developments and what actually works. I read up a lot on the subject so that I can talk "intelligently" to my rheumy about my treatment.
I do hope your sight can be saved.
audrey25251 Susanne_M_UK
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Thank you Susanne; your kind wishes are appreciated. I hope you have success with your rheumatologist. I'm afraid I don't have great confidence in their ability to make much difference to the course of this most debilitating disease.
Judyg audrey25251
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audrey25251 Judyg
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