Things have gone from bad to worse

[shekinah66]

I’m sorry I haven’t been in touch but I am under the professor at the oxford orthaepedic hospital in oxford even though I have moved to Hampshire now. What is his name please as I’ve forgotten. It’s the well known pofessor.

I have not taken any steroids and the professor has put me on luflumonide but I have got to the point I’ve had enough and don’t care what happens to me anymore.

I am now in hospital and came in Friday evening as an emergency as my headaches had become worse and Friday night and yesterday morning I was put on I was put on 1000mgs both nights which made me a lot worse including pain on both sides of my face, left jaw and neck plus my whole head is burning and I can’t put a scrub is in as that hurts.

Also my skin is now so thin and my veins are near enough in visible. My whole body hurts.

Anyway I have refused anymore of the steroids which begins with m and were sneered via a drip and I’m going to call the professor tomorrow to call the hospital here. I’m seeing a doctor this morning and the rheumatologist tomorrow with a view to having a biopsy of my head or brain. I presume the GCA is to do with the arteries in the brain. I have been told I will probably be in hospital for most of next week.

I have also been feeling nauseous and dizzy for a few weeks now too

So this is where I am at

Page

[Rose54]

Hi

I am so sorry you feel so low at present so sending you a big hug.

Sounds like you are in the right place for now, hope thay get you sorted out soon and you quickly feel better .

xx

[PMRpro Ambassador]

It sounds as if they think you have GCA - and the biopsy will be of the temporal artery, to the side of the forehead. Your infusions have been of methyl prednisolone, that is the form of corticosteroid used for injections or infusions.

I do hope you feel better soon

[SheffieldJane]

Oh dear Page you have been through a terrible time. The biopsy for Giant Cell Arteritis involves a small incision in your temple and a section of that artery taken for analysis. Prednisalone is the only drug that safeguards our eyesight with GCA, I urge you to stick with the treatment for now. It will not always feel so awful.

If you would recognise your professor’s name, senior staff are normally listed on the hospital website.

Wishing you a speedy recovery - sometimes we just have to surrender. 🌸

[Marilyn1959]

Hi Page. Like the others I advise sticking with the treatment, however dire it feels right now. It may just save your sight. Thinking of you and sending hugs and best wishes.

[Horsewhisper]

Hi Page, sorry to hear that you are in hospital - I hope you start to feel better soon. At the Nuffield Orthopeadic Centre in Oxford, Professor Luqmani is known for leading on GCA and Vasculitis. Also in the Rheumatology department you have Professors Arden, Bowness and Wordsworth. Hope these names are of help to you.

[shekinah66 in reply to Horsewhisper]

Thank you it is professor luv mani that I spoke to and I believe he is the top professor in this country

[SheffieldJane]

Good luck now you have found him. 🍀