RA/GCA Emergency

[Lollybygolly]

A year ago I was diagnosed with RA, having ground to a halt physically was joyous that 30mgs Pred gave me my life back. Painted around 70-80 pictures this year. Five weeks ago headaches and eye pain started just after Vax so I ignored them. Had to call 111 in agony last night and today everything moved so fast. Optometrist saw me: no pressure or damage visible. Doc spoke to my Rheumy and is pretty sure I have GCA, did blood test and I’m booked for scan/biopsy tomorrow. 60mgs pred per day for now to save eyesight, which is blurry in one, ok other. I’m shocked and surprised how the NHS which I thought was only dealing with Covid, has been so superb. The 111 call handler, nurse and doctor were brilliant and as I live alone, gave me courage and support at a frightening time. I hope everyone who experiences sudden temple pain snd eye pain gets quick diagnosis as I’m told it’s time-crucial. Blessings to all.

[DorsetLady PMRGCAuk volunteer]

It is time crucial - and well done to all concerned...and yes the NHS is open!

Just be aware of biopsy result - it doesn’t always come back positive- just depends if the sample taken includes relevant rogue cells....but sure as eggs are eggs it sounds like GCA to me.

[PMRpro Ambassador]

Hmm - wonder if that RA was really PMR? They don't usually use pred for RA these days.

NHS - when it is good, it's very very good. I think it is sinking in that a lot of people have been trying to "save the NHS" so when you do call them they jump.

[SheffieldJane]

Sorry this as happened but your care was exemplary. I hope your sight has been saved. Please let us know how you get on. I got GCA/LVV after 4 years of PMR when I’d got down to 3 mgs. We just have to get on with it really. The world has stopped to wait for us.

[Lollybygolly in reply to SheffieldJane]

Hi Jane60mgs of pred and I’ve been mostly awake... but no pain!

I looked at the life expectancy (silly me) and shuddered as my first grandchild is on his way in September/Oct. Then I saw you had done pretty well since your first diagnosis with GCA. So I’ll try to glean from others snd especially you how to stay upright and live longer!

Many thanks for your support - I’m having a bit of a life review and thinking about making decisions to prevent my being a burden to anyone. Back to bed amd maybe some sleep before tomorrow kicks off! Nighty bibes. 💃💃

[PMRpro Ambassador in reply to Lollybygolly]

"I looked at the life expectancy "Sorry - not sure what you are talking about there - it is well recognised that while there is an increased risk of stroke or heart attack in the first year after diagnosis of GCA, the overall life expectancy is unchanged. You have to remember that many patients are already at an advanced age and have comorbidities that contribute to their death.

arthritis-research.biomedce...

"We found no difference in the overall survival of GCA patients compared to matched controls, but there were differences in the distribution of underlying death causes."

Another paper

ard.bmj.com/content/77/Supp...

links shorter life expectancy with visual loss - and that suggests later diagnosis and more severe disease might also be a factor. They also say the cause of death is mainly infectious disease - to me suggesting a generally more frail patient.

[Lollybygolly in reply to PMRpro]

Thank you, that’s very encouraging!

[SheffieldJane]

Gosh! That is something I haven’t looked up. We really have to keep the dark thoughts away! Try anyway. How exciting about your new grandchild! Mine are the absolute joy of my life. They also give me an injection of good health and energy whenever I get to see them ( my family have emigrated to Australia).

GCA is not a death sentence at all. With good and careful care we can look forward to it going into remission. I know that the insomnia and the high dose steroids can really impact on your moods. Please stay with us and ask your questions as they arise. There is a lot of experience, knowledge and kind support available on this forum. It helps so much.

[Lollybygolly in reply to SheffieldJane]

Thank you so much!I’m pretty pragmatic - not brave - but for me I’ve always preferred to know my enemy up close, health wise, so I can concentrate on beating it. I’ve slipped into bad habits during lockdown, health wise, exercise and eating. So it’s time to be good and do what I know I can do. Onwards and upwards. Doc will call me with blood results snd then I’ll get started. Again: bless you! 🙏

[DorsetLady PMRGCAuk volunteer in reply to Lollybygolly]

18 months undiagnosed, 4 and half years on Pred, almost 5 years in remission and I’m still walking, breathing, thinking and virtually pain-free (apart from osteoarthritis) and in better health than I’ve been for ages.

TBH my OA (pre GCA and nothing to do with Pred) has caused more issues than GCA.

You’ll be fine!

[MrsNails]

That’s good to hear the NHS have moved so quickly, good luck 🍀 today & let us know how you get on.

In the past week a member of our family has had The Very Best Service on the NHS so it’s good to hear it can & still does work!

[Lollybygolly in reply to MrsNails]

I feel very privileged to have been in such good hands so far. Thanks, I’ll come back later. X

[Horizon12]

Great to hear some positive feedback.