Diagnosed with PMR in late 2010 - almost four years following my husband’s death. I have never been a good decision maker, so guess stress related to this may have led to PMR. After 3 and 1/2 years on prednisone, all was clear (so I thought). I had no idea that I was only in remission.
Along comes 5-5-2021 and I lose central vision in my left eye. Only noticed while driving and realized that I couldn’t judge whether or not I had enough distance to pass a car. Noticed again two days later, I called my optometrist & his nurse was told about problem. I had seen him about a month earlier for a routine checkup…… all was good- no change in script for glasses.
Saw him several days later & after testing, he said I had an ‘eye bleed’????? Sent me to an ophthalmologist- who after seeing that I had PMR - diagnosed GCA. By the way…. I DID NOT have the usual symptoms. In hindsight, I know I was tired (but 80 yrs old & taking care of a 2-acre yard & all that involves is tiring). Also felt that I had lost some hearing, but again ‘old’ age according to my kids. Biopsy was negative and all bloodwork was fine; MRI of brain was done; ultrasound of carotid was done. Treatment began with 60mg of prednisone for 3 days, then 50mg for 3 days, then 40mg for 10 days, 30mg for 2 weeks, 25mg for 2 weeks, 20 mg for 4 weeks.
Today—- I start on 15mg prednisone daily (all prednisone with bkfst, after a 40mg of omeprazole 30 minutes earlier). I don’t remember taking omeprazole with PMR, but do have acid reflux. I feel halfway decent until about noon, then downhill till 5 or 6pm. I find myself sleeping for most of the day & totally without energy. Ooooh and have gotten downright mean- a nicer word would be irritable.
I know this story is much too long, but really feel that this treatment is all wrong… but at a loss as to handle it. Three of the four doctors involved don’t agree with the ‘lead doc’ who is the ophthalmologist. It’s been hard for this 80 year old to handle such a change in lifestyle. I have 3 living children; grew up ‘picking cotton’ : and attended college off and on till I was 52 yrs old.
Thanks for any help.Read less
Written by
Elvisginger
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Well whether you have GCA or not ….. (Eye and hearing issues could indicate you have, Biopsy could be a false negative - lots are, Bloods aren’t always raised)….
the correct initial treatment to protect you was taken in my view, but the fast taper may well have left you feeling wiped out -and understandably so.
All you can do now is to continue to taper sensibly and hope your body adjusts accordingly….and wait and see.
What do the doctors who disagree with Ophthamologist think it is? …and more importantly what are they doing to ascertain what it is?
The ‘taper sensibly’ is the part that might not happen when the lead doc seems to be calling the shots. Most are feeling that it was a stroke of sorts. Neither the young rheumatologist nor surgeon agree with him…in fact, the rheumatologist said she would have to follow his lead even though she disagrees. Think they are afraid of his strong personality. My GP doesn’t agree either, (but honestly don’t think he’s that familiar with GCA). I didn’t count my grandson-in-law’s opinion but he DOES agree with the ophthalmologist …. But doesn’t want me driving, soooo I decided he was too young to count!!
During my 3-1/2 year journey with PMR, I had such energy.. felt like I could put a roof on a house…. But this is the exact opposite.
The ophthalmologist did say that up to 20% show no prior symptoms; but added that had I been 3 days later, I would have lost vision in both eyes….
At present, the memory issue seems to be the worst part! Thinking that causes frustration and anxiety issues.
I know I have to learn my limitations & develop a new mindset, but not easy when 80 and rheumatologist recommends yoga (hmmm) or meditation ( which I do all the time, but on the wrong things)…
Your grandson sounds very sensible!…and well done the Ophthamologist- I had already lost sight in one eye, but the quick action/diagnosis of mine saved my other eye…they do know the signs better than many Rheumies.
You’re never to old to learn…..meditation yes, but maybe bide your time awhile on the rest of the yoga, until you feel up to it….and certainly no more roofing!
And we need to ask - what do you DO in the morning before you start to feel bad? Are you simply trying to do too much then? Being on pred isn't a licence to springclean!
Question… If it were just a ‘regular stroke’ like grandmas and younger people have, would I have been put on prednisone? Or was prednisone prescribed because it was of the eye? I’m certainly not the ‘sharpest knife in the drawer’ when it comes to GCA…. And none of these thoughts and questions bothered me when I was diagnosed with PMR ten years ago. I just did whatever I was told to do and took prednisone as prescribed. I knew and felt the symptoms (pain that was very obvious), and knew when & what to tell the rheumatologist; but in this situation, I don’t even know if I had symptoms. I feel totally useless and a thousand times worse since the diagnosis and being put on prednisone!
The stroke in GCA is because either a tiny clot blocked the narrowed artery or the artery was so narrowed that the blood flow was reduced a lot. Either way, reducing the inflammation that is causing the swelling is the best way to reverse the condition - hence the very high dose of pred that is used in GCA so it works quickly - ideal is a very high dose as an infusion, works much faster than an oral dose.
It is actually not that often it is the eye itself - it is the blood supply to the optic nerve or the occular centre which is situated in the occipital region of the brain - often causing headache at the back of the skull. If it is due tp reduced blood flow you may not have pain - but the effect on the optic nerve can be seen by examining the retina and seeing the appearance of the optic nerve where it joins the retina. If the blood supply to the optic nerve is compromised over time, the optic disc on the retina becomes enlarged and paler together with other signs which are described here:
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