And I’m still on 60mg of prednisolone . Life has changed quite a bit and that’s not a bad thing really. I get very tired and feel a bit disoriented when I go outdoors.... really a bit jittery and disoriented. Hot and cold sweats aplenty too.
Any tips always welcome.
Hi David
It’s a big dose of prednisolone & takes a bit of adapting to.
How long have you been on it, a week or little bit longer?
You will get used to it & resting is really the best thing for you.
The hot n cold sweats are not much fun but again hopefully they’ll settle soon.
Take Care
One of our GCA’ers will be along soon l’m sure to give you some tips.
Kind Regards
MrsN (PMR)
2 and a bit weeks now. I am resting as much as I can. Ha ha. Thank you D
The Pred can make you a bit restless too!
Take Care
MrsN
Hello, hang in there; it gets better. High dose Pred brings a funny (one word for it!) combination of fatigue, jitters, racing brain which is foggy as well, uncoordinated body. I know that disorientation outdoors and realised that for me it was because my eyes couldn’t change focus quickly enough. I could walk in the empty fields but through a woodland, no way because of the passing greenery that my eyes couldn’t cope with focussing on.
Exactly for me. Eyesight is a bit off at times. D
It will be and can change through the day. I got a fright when one day I thought the GCA was coming back when I was reading then looked out of the window and everything was completely blurred and I’m long sighted. 5 mins later it was ok, but would do this every time. The optician said this is normal for Pred. Others have said their spectacles stopped working for them. This improves with dose.
I am going to book an appointment with the opticians tomorrow. My eyesight has changed a bit. I’m 67 now and I reckon I am due a proper check up. Thanks. D
My optician was very nice and checked my ocular pressures every 3 months for free. It takes a few minutes. He said that is one of the the biggest risks for high Pred takers.
Not a good time to get new lenses though as the Pred does affect your eyes but good to have a test to see their general health.
When l was on 30mgs of Pred I had a pair of middle distance specs made as l could see ok in the distance & to read ok but anything just around me was generally very blurred!
You're the first person here who has described exactly the disorientation and slowness to focus that I have experienced on developing PMR and taking Prednisolone.
It was very weird, like my hands were not in focus so anything arms length was very difficult to see properly.
I also found if l used the iPad & then wanted to watch TV l’d have to give my eyes chance to adjust!
David I remember you telling us you are flying to Cyprus on the 1st June. You really should consult your GP or rheumatologist if it's safe for you to fly. Your present state doesn't sound you are well enough to fly.
If you and your wife have to cancel your flight because of ill health , then your insurance should cover you.
Hope you feel well quickly.
Thank you for that. Duly noted. I see rheumatologist next week. D
HI David, I am one of the GCA'ers Mrs Nails said might be along. First I Had GCA for 5 years and am now into 8th of remission.
This is a journey none of us ever wanted or would have chosen to undertake, but you can cope, it just means learning to walk to a different tune.
I will send you a PM which will give you a link read as much as you can and download anything you want to keep for future reference.
The high dose you are on will be reduced, but always no more than 10% at a time and always try and give it a month before you take the next drop. I am assuming you have been referred to a Consultant Rheumatologist, as unless you are under a GP who has dealt with or knows exactly what GCA is all about that is where you should be dealt with.
The jittery feeling and the sweats will ease, it is just at present your body needs all the help it can get and it is now dealing with an auto-immune illness and also medication, which is powerful, but stands between keeping your sight or losing it, partially or total. So just remember that fact.
One thing, we are all different and can and do react slightly differently from one and another. You will go into remission..................but not cure as currently we do not know the cause.
Ensure your optician gives you re-actolite rapide lense. Pred and sunshine not a good combination as it can cause existing cataracts to grow or encourage them along.
One thing if you are still having a problem with sight, contact your Consultant.
No more, as this is too long an answer............will send a PM.
Keep on coming back to this site and ask questions.
Thank you so very much. My glasses are light reactive and double up as sunglasses. I am going to check about flying and if that’s off we will cancel our Cyprus holiday and go on a med cruise from Southampton. All I need is fresh air, warmth and somewhere to laze about for a few weeks. David
I would opt for the cruise and forget about aeroplanes. Maybe your travel company will do the switch for you when you explain the problem. Like GCA etc.
I cruised many years ago and loved every minute of it.
We "cruised" too (mainly on rivers though), really miss it now. The ramp getting on and off the boats are very steep sometimes, also steps to go up to the promenades.
Ah well! One "accepts"!😏
I was so up and down on the really high doses. But lucky it made me happy not depressed. I would get up at dawn and bake cakes. However I was working long hours and would often break out in very unpleasant sweats which made me look as though I had water poured over my hair. I found regular meals and lots of fluid stopped me zooming up and down. You will survive.
Starting actemra this month
Prednisolone for 14 months.
Severe pain for 5 months
After 9 months of Pred...
