Ended up at Moorfields eye hospital with deteriorating sight (in one eye) and issues with peripheral vision. After several examinations, a scan, sclerosis is the tentative diagnosis but waiting a retinol specialist appointment on Monday for further scans (dye in vein one?). They don't think GCA, we'll see.
So, steroid drops hourly and 60 mgs of pred daily!!! Feeling a bit shocked by it all. Can you experienced folk tell me how you coped on 60mgs?
Glad to hear things are in motion.
To be honest when I was on 80mg initially for 2 weeks and then 60mg for 8 weeks, I think I was in shock from
a. losing sight in one eye
b. then relief that other one had been saved and trying to get brain around things both mentally and physically, and
c. what is this thing called GCA and researching it,
that being on such high doses didn’t really register.
I just knew I had to be on them…so just took one day at a time - absolutely literally in the first 2 weeks when it wasn’t guaranteed I’d wake up with sight intact.
I was a tad hyper - and could talk for England [late hubby very often told me to give it a rest!’] - would have won an Olympic gold 😳..
Didn’t sleep well, but that was no different. I hadn’t for months - but at least I wasn’t in pain anymore so could hack that..and it was summertime -so many cups of tea in the garden at sunrise.
I did have a couple of bouts of oral thrush, but other than that - and the inevitable weight gain [hadn’t found this forum then with all it’s good advice] not much in side effects line.
I still seemed to spend at least one day a week either at GPs or hospital being monitored.
If it’s not GCA, then you’ll soon be on lower doses - so hope that’s the case 🌸
Full of admiration for you, DL. You’re a feisty fighter and such a great example. 👏👏👏
😊others might say sheer bl##dy-minded
🤭
It's a roller coaster of emotions isn't it? Thank you DL, I'm grateful that I am being treated and the other eye looks ok. I am so sorry that you lost the sight in your eye but you are an inspiration to get on with it 😍
Tbh -to use a well worn phrase -it’s sink or swim isn’t it? Plus you don’t know what you are capable of doing until you have to -and there’s too much living to do. 😊
🌸🌸to you~! So beautifully written and expressed, you are unfailingly a strong inspiration for all of us.💞💞
TY -you too 😊
No steroids drops for me but also 60mg Pred for suspected GCA when I developed double vision. I was on that high dose for several days only and like DL was extremely hyper until various investigations including non-invasive ultrasound scan ruled out GCA. Hang on in there and best of luck 🤞.
I've been hyper on 20 mgs, better warn everyone!
🥴
Not been as high as 60mg but at 30mg I was hyper! Couldn't sleep much, mood swings and low tolerance. My doc prescribed Amitriptyline and sertraline to try to help with the worst of the symptoms. Most side effects disappeared when I got below 15mg. Make sure and find a series of books or TV series to help you through the wakefulness. I also did crochet when I couldn't sleep. Made myself a jumper! I call it my steroids sweater 😂
I had been diagnosed with PMR and was on 15mgs of Pred for about a year when I first had GCA. They put me on 60mgs per day for around a fortnight I think (it was a long time ago now). I remember feeling drunk all the time, and losing my balance a lot while walking to the station to go to work each day. A few times I ended up in people's front garden hedges, but just pulled myself out, dusted the leaves and cobwebs off my suit and carried on.
Even as I reduced to lower doses the drunken feeling persisted, but once I got down to around 20mgs per day things started evening out and I felt much more in control of my limbs and balance.
The second time I had GCA they put me on 50mgs per day, and this time I knew what to expect, so was much better at controlling the drunken reeling as I went about my work each day.
When in the situation you just do what you must to keep going, whatever that entails, beit pleasant or painful, it's life and we just have to carry on living it, one way or another.
Good to hear you have the proper management now. Can't help with the pred dose, never been there, but hold on to the fact it is needed to save your vision. And remember you are unwell - don't try to dismiss it as nothing.
Do let us know the final diagnosis. Swelling of the lids and surrounding tissue is not generally usual with GCA. Hope all goes well at your next appointment.
Thank you, will post an update later.
I was on IV pred for 3 days after my GCA diagnosis 2 years ago and then the usual very high oral doses thereafter. I was totally in outer space for a while with many of the symptoms that others describe here. Very wobbly on my feet, total "pred brain" and couldn't think straight either. I also got extremely jittery and would physically shake most of the time which was a bit disconcerting. The high dose symptoms for me seemed to settle once I got down to about 15mg.
Recently I'd been down at 5mg and travelling nicely, but had a massive GCA and PMR flare and am now coming down again from a couple of weeks at 50mg, so going through the same process all over again. Oh joy. At least I know what to expect this time…
I hope knowing that whilst it's unpleasant, your sight is being protected and that it's the pred causing the unpleasant side effects, which ease with lower doses, that this will help you get through it a little easier. My sympathies and wishing you all the best.
Thank you so much for your reply, I am having the wobblies and some manic laughter after a bizarre experience with a phlebotomist today. It's too long a story for here but believe me she literally shouted at me and ran away, eventually came back, my notes did not indicate covid positive at the weekend so i invited her to put on a mask, I was wearing a mask, may not have been positive (ran out of tests yesterday) on day 11. She eventually came back dressed in masks (plural) and all the PPE. She was still shouting at me at which point I had my mental health practitioner hat on and advised that she needed to calm down, that she was being inappropriate and unprofessional, she was safe etc... I told her I was feeling angry at which point she told me to give my head a wobble!! I eventually calmed her down and she apologised. It went on for ages!! I was laughing about it back in the waiting room, much to the consternation of the rest of the patients who thought I was losing it ( I probably am)
Anyway, I'll post an update on the eye, better news than expected.
Oh dearie me… But great to hear that your high dose pred hasn't affected your sense of humour. Well done!
I have had very high doses of prednisone for GCA for two episodes of sight loss. Fortunately for me currently my sight is fine and I have been off all treatment (prednisone and methotrexate). On high doses I suffered all quoted side effects. Initially in hospital I was so manic that hospital staff suggested I watched television in an unused room but all I wanted to do was run up the ward talking non stop. My husband fortunately was very supportive. After three years I have been off all treatment for 9 months. Good luck.
Oh well done, glad you are well
Symptoms recurring on 3.5 pred.
PMR Tapering
Covid Sick Day Rules
Feeling a bit down and lonely today so logged on here to connect with 'my (PMR) tribe'even though I should be doing other things
