My mum just called me to tell me that the tiny scrap of outlines in the top right of her right eye, which was her only "vision" left after going blind from late diagnosed GCA has started to blacken and fade yesterday and today.
We have been reducing her steroid intake from 60mg at the end of Oct to 20mg and it has been that for over 2 weeks now with no other effects.
I have left a message with the rheumatologist's secretary to call me and told her to take another 5mg steroid pill so that she has had 25mg this morning.
I don't know what else to do, should she go into hospital and get another large IV dose???
Written by
Jeromekjerome
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A&E now, is what I would do.....unless by the time you have read this the responsible medics have contacted you.
Your Mother needs prompt medical attention. Did you emphasise that when you spoke to the Secretary. You should have a had an answer within at the least 20 minutes.
Me, I would not have left a message I would have probably said, no message I want an answer now. But I do understand we are all not 'bolshie' like me.
Scoopitup, I was so concerned that I did not bother with anything else. Med attention was needed asap. I just hoped that Jkj would see the answer and get ot A&E fast.
I can only hope her Mother does not lose the rest.
However, Diagnosed Oct 2019 - 60mg and now down to 20mg........... 5 months at best.
In my eyes the problem has arisen with fast reduction.
My personal experience was Feb to Nov to get to 40 mg and then a 'flare' = back to 60 mg and this time, slow reduction - no problem till I hit 20mg, then back to 40mg. No problem thereafter, we had met Ragnar and the first slow taper was devised.
I could feel the urgency. I am hoping the issue addressed by now. I suppose I was thinking 60mg on the way to the A&E. I am keeping my fingers crossed now.
Got through A&E now sat waiting in the eye clinic. I had to be very vocal at all three desks to get to this point. The rheumatologist finally returned my call while e were in the waiting room and said this is what she would have advised! Thanks to this forum I am here and not waiting for that call!
Right well, the consultant was a real miserable nightmare. He was blunt as you like and told us that losing that last bit of perception was always a possibility and that she was "lucky" to have had it this long. I told him that nobody has ever told us that before, which he wasn't even bothered about. The whole thing was horrible.
I have to up her steroids back to 40mg for two weeks just in case in helps but he said it probably won't.
Parking at and negotiating Warrington hospital is a horrendous nightmare!!!
It all seems so unfair- her condition is so aggressive!!!!
I cant understand their total lack of care considering it was down to a lack of a high dose of steroids from them that hastened a loss in the first place. Are you considering complaining about this consultant? He needs to be taken to task. YBB
It sound like the trust is struggling and is probably failing but that doesnt excuse their manners or lack of. Your mum has suffered enough without more inconsiderate buffoons.xx
Stay positive you are doing everything you can. Do not let anyone fob you off be as firmly and as pleasant as you can be. . Ask if necessary to see Head Consultant in Rheumatology, if you feel any doubts before you leave that hospital.
There is a Consultant Rheumatologist with special interest in PMR/GCA in Leeds but she doesn't do private work as far as I know. Sorry I don't know of anymore but the more long serving contributors on here will definitely know I'm sure. Hope you and your mum are holding up ok after such an upsetting experience x
I'm so sorry - but however inept that consultant at imparting s&*% news, he was only telling the unvarnished truth. And possibly had at the back of his mind you may take this further so he might be in doodoo - which of course you really should.
So sorry Jerome. Incorrect diagnosis caused me to lose most of the sight in one eye. I can image how precious that small amount of sight is to your mum. I’ll be thinking of you both. All the best. Lots of hugs.
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