Sorry I’ve not been around for some time, I’ve been feeling very poorly just lately.
I’ve now got a condition called uveitis, I’ve been feeling very ill, unable to eat much and generally unwell. Yesterday due to severe eye pain I went to emergency eye hospital and it turns out I’ve got uveitis, I’m now having dexametheson eye drops, eye drops for dry eyes and eye cream at night. It’s been very painful and I’ve not been able to see.
As this condition is related to immune disorder I was wondering if I should up my oral pred, I’m on 5mg at the moment, I have emailed rheumatologist but so far no answer. Has anyone else got this condition and able to help.
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2013mayo
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Nice to see you back 2013mayo. We all dip in and out with these things. Except our lovely ladies who are made of iron girders. I hope you get to grips with this latest manifestation quickly.
Thank you, I’m still having trouble with my sight re the uveitis, I may have to go back to eye emergency to get it sorted. Yes I’ve missed not being on this site for a little while, everyone is so kind and helpful.I’ve just met another man who’s just been diagnosed with GCA and is in a terrible state so I’ve told him to go on this site and he will get all the help and support he needs.
HiI think I’ve been suffering from this for some time, I had vision problems blurring fuzzy and so on, feeling very ill, unable to eat generally drained of all energy, I just put this down to temporal arteritis. It wasn’t until I got extremely painful eye that I went to hospital, unfortunately the doc who saw me was not in the least interested in my condition, very unhelpful, anyway she gave me dexametheson eye drops to use 2 times a day, lubricant eye drops every 2 hours for 28 days and eye cream at night.
She asked me if I wanted a follow up appt, of course I said yes, this condition has been going on for a very long time.
I’ve no idea of the long term results, perhaps you can help me.
Oh wow,I’m really miffed that specsavers did not see this 3 weeks ago, I told the optician my sight improves for a few seconds if I put in eye drops, she just ignored me, apparently she was a locum.
Well at least I’m on their radar now so hopefully they will keep an eye on me.
It is more comfortable today, yesterday I was crying with the pain.
Thank you for your help.
The one thing the doc did tell me, there are 2 types of uveitis, in the front of eye and at back of eye, mine is in the front at the moment.
She did say uveitis, but as I say she wasn’t too interested, I understand they are busy, but non the less, it’s my eyes and important to me.Your help has been invaluable, thank you so much.
Sorry to hear you’re unwell and I know only too well how scary and painful eye conditions can be. Are you taking Alendronic Acid or been given something similar? I’m convinced my eye condition was started by an infusion I received. The eye hospital I attended acknowledged that could be the case.
Hi 2013 Mayo my partner had PMR managed to come off pred eventually, he has something called BK27 i his blood and also gets flares of uveitis in fact he has this now and is back under the hospital. Drops every hour and his eye gets very painful with double vision. He also has myasthenia gravis, all autoimmune. Interestingly enough his mum had rheumatoid arthritis, his sister has MS and has for many years and his sister's daughter also has MS which she developed around the age of 40! Seems it's all related. Ask to have your blood test for BK27 apparently this is often the case with uveitis
However - before you panic or think you are not correctly diagnosed, you can be ANCA positive without having one of those vasculitides. PMR/GCA are a vasculitis but not ANCA positive. It is the degree of ANCA positive that matters.
Hi Dad2Cue, he has been having problems for a long time now. The first thing I noticed was the way he was walking, leaning forward a lot but we put that down to the fact he was waiting for a new hip. My partner used to be a marathon runner so he has hammered his body when younger.I noticed the head forward was getting worse and I know a consultant arranged a xray where the spondylitis was confirmed, he showed us the curve in his spine, but said nothing could be done about it.
The PMR came after and he was on prednisolone for over 12 months. Whilst that seems to have settled the trouble with uevitis continues, he had had flares of this several times and has it quite bad at the moment. It is all awful for him as well as having 2 hips replaced. The second one was done at the end of October which seems to have started the eye problems again
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Link between dry eyes and throat and PMRGCA? Any ideas?
"Wanted" side effects!
Discharged by NHS rheumatologist
past my sell by date
