I blamed the steroids at first as blurry vision cleared when I got down to 10mg. Then I had a bad flare and had to go up to 15mg and blurry vision came back. It’s never cleared and now double vision has joined in. Excellent care at the eye clinic. MRI of my eyes showed slightly enlarged muscle. Also being checked for thyroid eye disease.
It’s always really bad when I am shattered so I would be very grateful to be rid of the fatigue.
I had exopthalmic goitre with Graves’ disease. My eyes were very prominent and there was some visual distortion. I was told that they would always be like that. However, over the years my eyes settled back to normal. Doctors can spot it, and so can I in others. Is this what they mean by thyroid eye disease?
The fatigue is awful, but we do tend to forget how bad the pain and disability was. Do incorporate a strictly observed afternoon nap. It really does help you to have an evening and not become too overwrought to sleep at night. Even if you don’t drop off at first, lying in bed, in a darkened room with your eyes closed, for an hour or so, is very restoring - no phone or IPad.
Thanks for posting. So I shouldn’t have had radio Iodine treatment. Well no one told me. I recognise most of those symptoms my horrid little sister called me Marty Feldman. I feel quite proud of my 30 year old self. I was working hard building my career with two little girls, I didn’t take much time off. I could take a leaf out of her book. I just sort of accepted it and got on with things. The beauty of being young and living in the moment, no brooding.
I have been left with a slower metabolism and dry gritty eyes. We are all still here though a bit battered but carrying on.
Happy Christmas PMRPro you have taught me more than anyone over the years. Thank you!
Just read that information. Thank you very helpful. Really appreciate your input.
Could I ask something else please ?
I just got home from A&E. I fell last Wednesday hurting my hand. It has steadily got more painful so had to give in and get it checked. X-ray showed tiny piece of bone broken off my thumb joint.
I feel ghastly. Probably bit of shock and miserableitis !! Do you think I should up my steroids for a day or so ? On 5.5 at mo.
I am so pleased to hear that you are having excellent care at your eye clinic. Double vision is caused by a huge range of problems from long-standing congenital or childhood squints, nerve palsies, decompensating latent squints and problems with the muscles themselves. Some conditions causing double vision are quick and easy to diagnose but others require more extensive testing and the fact that you’ve already had an orbital scan is excellent. Thyroid eye disease can cause swelling of the muscles so it is correct that they are testing you for that. Unfortunately most of these conditions are worse with fatigue. Fortunately the symptoms of double vision can often be alleviated with help from the Orthoptist so hopefully you will have seen one. Let’s hope you get a diagnosis soon 💐
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Tapering, back-update etc.
Worse after 2 years
Massive flare after 2 years
Going into month 2 of GCA and PMR 
PMR and now a heart attack
