remaining scrap of vision blackening

[Jeromekjerome]

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???

[jinasc]

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.

[Hidden in reply to jinasc]

Would you suggest higher dose of pred until HOSP etc.

Jkj = I hope this can be stopped ASAP. ❤️

[jinasc in reply to Hidden]

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.

BTW Me? GCA 5 years, into 9th in remission.

[Hidden in reply to jinasc]

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.

[Jeromekjerome in reply to jinasc]

Thank you. Waiting in the eye clinic via A&E now.

[Yellowbluebell in reply to Jeromekjerome]

Good luckxxx

[scats]

Good luck. We're all behind you.

[Yellowbluebell]

This whole thing just get more dire by the minute. My hugs to you all. Let us know how you get on. YBBXX

[Hidden]

Sending Hugs to you & you Mum 🌷🌷🌷

Let us know later how things go xx

[Blearyeyed]

I hope you headed to A and E as suggested by Jinasc. I'm so sorry that you are both being out through such distress.

Good Luck , please keep us updated, and give our love and support to you Mum and take care of yourself too.xxxx

[Jane-s in reply to Blearyeyed]

I do hope you can get some helpful advice. I’ve been thinking of your Mum so much, Sending love and waves of strength

[Jeromekjerome]

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!

[Yellowbluebell in reply to Jeromekjerome]

Be as vocal as you need to get your mum seen.xx

[SheffieldJane in reply to Jeromekjerome]

Thinking of you and your mum and wishing for the best outcome. X

[GOOD_GRIEF]

Now start raising a ruckus. This should be treated as a medical emergency, like a stroke or heart attack would be.

[Jeromekjerome]

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!!!!

[piglette in reply to Jeromekjerome]

I feel so sorry for your mother. I cannot believe the attitude of some medical staff. They seem to think of people as just numbers. It is so wrong.

[Yellowbluebell in reply to Jeromekjerome]

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

[Jeromekjerome in reply to Yellowbluebell]

they have all been bad

[Yellowbluebell in reply to Jeromekjerome]

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

[jinasc]

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.

BTW which one are you at?

[Jeromekjerome]

Warrington

[SheffieldJane]

What a brute!

[CathyM64]

Wonder how he'd feel if someone treated HIS mum like that!

[Jeromekjerome in reply to CathyM64]

I know. It doesn't take much to add a bit of politeness and etiquette to bad news does it?

He said 'I don't want to get your hopes up' as if we were idiots and that excused blankly stating a negative diagnosis like my mum wasn't even there.

He looked like we had ruined his day tbh.

I would like to meet with an actual expert in GCA at some point but that seems impossible where we are.

[CathyM64]

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

[PMRpro Ambassador]

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.

[Maisiek]

So sorry : hoping for the very best outcome 👍👍

[prunus]

My thoughts are with you both. I feel for you. All the best.x

[crafty_grannie]

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.

Maryo