I saw my very well equipped Optician today for a series of eye examinations, my last test was 2018, all was well. I had a peripheral vision test, an eye scan ( back of the eye etc) eye pressure. Various vision tests.
I have learned that I have cataracts, a haemorrhage in one eye possibly caused by raised blood pressure, which I have been dithering about and suspected glaucoma in one eye ( I failed two peripheral vision tests on my right eye - showing a blind spot in my peripheral vision). I have been referred to the eye hospital and may have saved my vision for £40.00. Even with no symptoms, we need to safeguard our eyes. My optician’s mum has PMR so he was understanding and kind. He knew about potential damage from long term steroid use.
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SheffieldJane
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That sounds the same as me - no eyedrops from the Ophthalmologist then?They apparently stop it from deteriorating. I have been driving myself distracted with information on it all. Lots of support on the Internet.
My head was banging after the tests, I’d also had those eyedrops that make it hard to see for hours. I don’t think I would be very good at being visually impaired. The optician - Simon - didn’t think that was causing the head pain, he also said he’d got cataracts too, he only looked about 40. Well that was a week of ordeals. I spent the evening watching a documentary about a wonderful religious hermit who lives in the wilderness on the border of Mongolia and Russia. Her family all died, she’s 70 and does all the hard manual work to stay alive ( they fled Stalin’s religious persecution.) I found her incredibly inspiring and cried it all out. The hardships, the sheer beauty of the mountains and river, snow. She had a breast tumour ( benign) the size of a football and she was chopping logs. She had real grace. It’s on you tube.🌻I need some of what she has. Bear with me, it’s an Adrenaline surge.
I am mental on my journey to finding the right dose and settling of gabapentin at the moment so don't worry that i notice others little Whoo hooo or boo hoo moments!
My first dose of the eye drops was awful and I think the optician gave me too strong a dose. I was totally unsighted and had to ask people to guide me to the bus stop and stick me on the bus, with syctns to driver of when to throw me off. It took about 12 hours to settle. I have them every year now and the dose is administered from a vial rather than a bottle.. Usually sunglasses and up to an hour and I can usually drive. My poor dog has her pupils permanently wide open and now has limited sight and took a couple of months to adapt.
Sounds like a tough woman.. Like the woman who never left the town cleared by chernobyl. Take care.... 😳
I am due for my annual test this month....I had cataracts normal for my age last time, but never take that for granted that it will remain so, and pay extra for photo of my eyes......
Hope the hospital sorts you out quickly and puts your mind at rest....I have always said it the extras to PM R that pulls us down....
Thanks so much for posting this. My biggest fear is loss of vision as I already have compromised eyesight (20/200 in left eye). Last I saw my optician was Aug/18, three months after PMR diagnosis. Next scheduled appointment is this coming Aug.
I’m SO glad you followed up. Sorry to hear of the woes, but good you discovered these issues now, before they progressed further. Bonus that your optician is familiar with PMR...makes such appointments that much better. Wishing you all the best moving forward.
My eye doctor sees me annually. When I started pred my pressure went up so he saw me more frequently, less so as the pressure diminshed as my pred was tapered. He wants to see me every year as long as I am on pred, no matter how small the dose. I also was told last visit (January '20) that I was starting to develop cataracts, but at age nearly 73 and five-ish years on pred, mostly really low dose, it's more likely age than pred.
Pleased you did it as well !! One of the reasons I am assiduous with annual eye tests is (as I have mentioned several times here before) my mother lost much of her eyesight to untreated GCA in the 70s-80s. It was her peripheral vision that was affected first and then other deterioration occurred accompanied with multiple small 'strokes'.
It is also simple here in OZ to visit an optician annually and they do a pretty good set of tests which would quickly reveal any encroaching or existing probs and then to an ophthalmologist if necessary. Re cataracts - they are the one 'major' side effect I have had on my 3 years on Pred and boy can they move quite 'fast' once in motion. I had mine done about 3 months apart - one publicly one privately (long story) but by the time the last one was done I could hardly see a thing out of that last eye - so best to get going on those. Thing is with eyesight it's amazing what we become habituated to - our brain 'helps' (unhelpfully really) to fill in the 'gaps' of things we are not seeing properly and that can become quite dodgy as you'd imagine. I also have had the delight of stupendously amazing vision following the ops - and yes it does modify to a new 'normal' quite fast - but being able to 'see' is such a FAB thing and it will give a real 'boost'.
I feel really positive about a cataract op. I have heard so many stories like yours. In a week when I have had a brain MRI, a Temporal Artery and underarm ultrasound, a Synacthen Test and the eye scans and so on. I feel a bit wired for the middle of the night. Headache still there but it has led to things that needed to be found I guess. I had a grandma who lost her sight to MS and a great grandma whom I suspect had undiagnosed GCA. It scares me too.
Gosh what a week! But good to have got them over and done with. Hope the results are good and there is some positive progress. It's hard having to deal with the unknown. Be kind to yourself this weekend and try and rest up a bit. x
My cataract op was no problem and I had instant improved vision - don’t think we realise how bad the vision gets because it’s a gradual deterioration. Before I went into theatre I was unsuccessfully trying to read a leaflet - when I came out I could read it all - I couldn’t believe the difference colours were brighter like someone had switched the light on! The nurse said sometimes it does happen but don’t be surprised if you get blurred vision for a few days which will improve - it never happened and my sight is still good.
I have regular checks as I have macular oedema, by regular I mean every 6 weeks. I was told a while ago that I have the start of cataracts but they don’t seem to be progressing and I think it is because I wear reactolite glasses and also a baseball cap when the sun is bright
Just remembered that I was told I had glaucoma and put on drops. A more senior opthamologist said on my next appointment that I didn’t have glaucoma. My cornea are thick and that makes the “puff test” inaccurate. So he took me off the drops. Another opthamologist (a trainee I think) tried a different piece of equipment to check my pressures and they came out normal when the puff test showed them to be higher
I got the impression that the peripheral vision test with a consistent pattern of missing dots of light, in two consecutive tests, was what concerned my Optician particularly.
I have reactolite glasses too. I remember reading somewhere they are advised for protecting your eyes. I've also been reminded by this thread that I got a letter to make appointment for eye check. Predhead strikes again
Dear Jane, it has been a barrage of things lately, one can end up feeling rather bruised, literally and metaphorically. The eye problems sound like everything we are told to expect but it doesn't feel any better when we are told it is happening to us. It does sound like something that can and will be sorted and I am keeping fingers crossed for your. And regarding women with real grace; you have it in spades. Vx.
Goodness Jane, what a week! My optician discovered raised eye pressures in both eyes about 6 months after starting pred & have had 6 monthly eye tests ever since through the hospital. Much improved through nightly eye drops. You might find it takes a while to find drops which suit you. How did the synacthen test go? Any improvement in adrenal function? My Rheumy told me a couple of weeks ago they wouldn’t be doing follow up synacthen tests as it means I have to change to hydrocortisone etc & she seemed to feel it wasn’t worth the hassle for me. I was rather surprised but there we are. Currently nearly back to 4.5 after the Xmas overload....
Am I right in thinking that you have been told that you will be on a maintenance dose of Pred for life because of Adrenal failure? Surely you should be monitored quite carefully and regularly by an Endocrinologist? I don’t understand your Rheumatologist’s comment about Hydrocortisone at all. Yes it mimics our own Adrenal Function (better) in that it has a shorter acting life and I think you take it in 3 doses, but what difference does Pred make to the need for Synacthen Tests? Do they mean if you took Hydrocortisone there might be some return of function, but not with Pred?
I am in a research project that my Endocrinologist ( Dr Debono, Royal Hallamshire Endocrine Unit) is running on using saliva to test the function. You chew on a little cotton wool role for a minute then pop it back in a sample tube ( it made me drool) 🤤 No results yet, I’ll let you know.
Glad to hear about your finding eyedrops that suit you and that can be used overnight. I have heard that they make your eyelashes grow - is that true? 😳
I think some people don't get on with hydrocortisone and have a maintenance dose of pred even if adrenal function "nonexistent" . Some don't have symptoms prior to dx either.
Yes but Pollyanna declining it has been given as a reason for no more tests. I declined it because I thought Pred was my “ devil you know” not so sure now. 😕
I can only presume they have a plan (sorry for chatting about you pollya😕). I presume it's based on the need for full support of pred for pmr at present but I don't have enough info to hand. I think there's always room to ask for a rationale for a treatment plan in writing from a consultant.
We have discussed it on the forum before. She’ll be along. I question everything and began to unravel when my two consultants were at odds about my treatment.
When I saw the Endo last June, we discussed staying on HC or going back to pred. Yes, I may well be on steroids for life, no less than 3.5mg. I felt that the HC was not helping me as much as pred & having to take it twice a day was “inconvenient “ & I found sometimes I had to take it very late in the day which is not good for aiding sleep. I had been on HC from February to June whilst my adrenal diagnosis was ongoing. I will be seeing my GP in a week & so will see if she has the follow up letter from the Rheumy regarding further testing. Try & get the facts for you.
Thank you for this. I am not sure what I will do in this area of my treatment. I might be overtaken by recent test results anyway. Good luck with everything.
Thanks for the explanation... I am a little gaga today! I thought that would be the rationale and it's not just you that preferred pred to hc that I have seen in here. I suspect I will be on pred a long while before I even have a ST. my rheumy automatically tests at 3 to 5mg depending on symptoms of pmr. I got to 6 for a year but back to 7.5mg at moment. If that's my limit I will accept that as you have seemingly one re adrenal. I hope that makes sense!
I am better today than the rest of the last week or so. I dropped BP med this am and my brain catching up with my head movement! I didn't drive a few days it was so bad. Hopefully I am bedding in.... Until next increase. I will shift BP to night and sleep through dizzy spells. 🤞
Good you got through all your tests this week. What a week!! This time last year I had my second cataract done. Marvellous!! so grateful for the absolute change having them done, has made.
Yup, mine were too, but in 93 days they changed and met the NHS's criteria for surgery!!! I went private because I didn't want to wait 12 more weeks, but in 3 months they went from "you have the beginnings of cataracts, to... "YOU HAVE CATARACTS!" !!!!
Formerly in the UK anyone on pred was entitled to annual free eye tests to check for raised pressures as it is a risk factor. Cost-cutting ...
Be grateful that you can just pay an optician to do them to check - here I must get an eye specialist appointment just to get anything not quite right to be checked out, opticians only do sight tests and if they are different to what they expect they refuse to do any more until you have seen a doctor! OH wanted new reading specs after about 8 years and of course the prescription had changed but they wouldn't have it that was the case. Served them right - the doctor told him he needn't wear specs for driving - he's have got new ones of them too so the optician lost a sale
Interesting conversations from all. I developed glaucoma, been on prednisone for 4 years. A drop of Latanoprost in each eye every evening keeps the pressure at bay. I developed temporal arthritis 10 days after I had cataract surgery. The Dr. told me their was no correlation between getting TA and the cataract surgery. I am not sure I believe him.
The glaucoma was diagnosed on a yearly exam. The cataract in my left eye had been going on for awhile and it needed to be done. Well, finally decided to have it fixed, and 10 days later got ill with TA on that side. I hope I am finally getting to the end of this. It has been over 4 years and all is getting better. Down to 2 mg. a day, many bumps in the road on this nasty journey of what the "hell" is this. A real education of something I really did not want to know.
Jane, the opthamologist is not at all concerned about that but is concerned about treating the macular oedema. I have very thorough ocular scans every 5 weeks.
Not really - you need to identify the parts of the retina that aren't working and don't see properly. Once you get the concept of it in your head it is easier to cope with. Part of my problem is I'm afraid it won't be OK - I feel the same going for my dexascan - maybe it won't be as good as last time ... I'm having a PET-CT next week - my fear is it will be normal! I need to know there is a good reason for the symptoms. And not anything seriously nasty
There is no known connection between cataract surgery and GCA. Cataract is simply the crystalline lens becoming cloudy. There are different types depending on where they form in the lens and the speed of deterioration varies greatly from one person to another. In the early stages the cataract may not reduce the vision very much and many still pass the DVLA driving standard although they can cause glare particularly of headlights. Although it is a relatively simple operation all surgery carries a risk so best to be led by the ophthalmologist. Some can stay the same for years. My 94 year old mother has only very slight cataracts and they haven’t impacted on her life at all. It is advisable to wear UV filtered sunglasses to help slow their progress. Hope this is useful.
Whew~! So good to know the forum is in neverland with me~! My thoughts are with you, Jane and I hope you are doing well. I'd love to come by for that cup of tea...I assume that is what cuppa means. Am I learning?💗
Oh I've been threatening to get an eye test, that's it. I'm making the appointment! What a week for you. Bit of a whirlwind to say the least. Good luck with all the results. Hope it's not too long for all the results! X. Here's to a more restful week for you. Thanks for the timely warning to look after our sight!
Acceptance is an active state though, facing the fear, getting those tests, taking those meds, cancelling that holiday, going for that sleep, not burying your head in the sand ( talking to myself here).
It’s sparing yourself. I thought I was done having got through all the tests, but the results still have to filter in, so it was a premature sense of completion.
What a really interesting string. Within 6 weeks of GCA diagnosis aged 58, release from hospital, and on 60mg/day of steroids, I had 'pressure' in my eyes, and given all I had had time to digest what GCA might have done to my eyesight, I was proactive to find out what was going on. Within three sessions and one month with my private optician, I had gone from 23 in each eye to 43, referred to local Opthalmologist who saw me the day of the 43 reading which the hospital had confirmed and I was immediately put on night drops (Ganfort) - until I end being on Pred - the cause apparently! Fantastic 'remedy. 3 months later, left cataract dealt with, and a further 2 months after that right cataract dealt with. These may or may not have been related, but the speed with which cataracts developed for what had previously been very healthy eyesight (my passion is birdwatching...) lead me to deal with the health of my eyes as a top priority. I now wear a good pair of sunglasses and often wear a 'baseball cap', not least as it keeps the glasses free from rain as I have no windscreenwipers!
The point I wish to make is please do not underestimate what you need to do to make sure your eyes are healthy and this can be done via NHS but also done privately and not too much cost. It means you are dealing with another set of specialists, in more waiting rooms, but it has saved me from having too many more concerns with my eyesight actually working.
I still have to get off pred and reduce methotrexate, but that's another part of the story... Good luck to everyone struggling with their eyes.
Thank you for this helpful post. Good for you to be so alert in the midst of GCA. I hope you are back watching your beloved birds. I have two families of Goldfinches and one pair of Bullfinches in the small Laurel tree outside my kitchen window. I counted 14 birds last year. Yes, I feed them - only the best. It is a joy.
Little flocks of robins (American robins, relative of the thrush) come to my old backyard, have done for several years, to strip all the hawthorne and holly berries. One year I think because of the weather the hawthorne berries had fermented and we had a yard full of slightly tipsy feathered friends!
Thank you Elizacarroll. We really need to look after our eyes. I am glad for you that the terrifying vision loss was temporary. I have heard of this warning before, it doesn’t always happen though.
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