Has anyone with GCA lost their sight?worried abou... - PMRGCAuk
Has anyone with GCA lost their sight?worried about this! had the painful temple and blurry eyes,steroids were increased from 12.5 to 42.5mg
Hi ritter here.diagnosed with GCA year gone Feb,biopsy same day had all the classic symptoms headaches flu like symptoms no energy all seem to be happening down one side of body and of course a lot of optical migraines,and ESR.s very high indeed,but i did not have double vision,started me olff on 60mg,s of steroids and hospital tried to reduce to quickly and that did not work so back up to high dose,but doctor left me on them as he was working off numbers instead of symptoms ,back to the Rheumy and he has started reducing at a much slower rate,I am now on 14.5 starting Tuesday,so do be very careful, if you dont get it sorted quickly you can loose your sight,good luck and dont leave things to chance and always get second opinion wer.e possible,ritter Anne
Hi heli13,
I lost sight in right eye in April 2012, unfortunately I didn't know I had GCA! I did have all the classic signs - tender scalp, jaw ache, difficulty in eating etc, etc. unfortunately, my GP put it down to a trapped nerve from a frozen shoulder (also wrong, that was PMR). I had a blurry eye for a few days, gradually getting worse, progressing up the eye, until I went to my local A&E dept when I woke up on the fourth day and the whole eye was affected. I was then diagnosed with GCA/temporal arteritis, call it what you like, and my sight was gone!
I don't what to be a scaremonger, and maybe I was one of the unlucky ones, but my advice to anyone who is worried about sight loss, is get it checked, if you can't get an appointment with an optician, then go to A&E, they usually have an Ophthamologist on duty. And don't delay, better be safe than sorry. Better to spend a few hours in A&E than lose your sight for life. Please let us know how you get on, and good luck. Dorset Lady.
Thanks for your reply, I'm so glad I found this site, as I don't know anyone else with this condition. Sorry to hear you were let down by the doctors. How do you cope with one eye? Can you still drive? Are you on steroids now? I'm seeing doctor on Wednesday so if I feel it's not improved they will probably up the steroids. Thanks for your help and hope you are managing ok. Helen
Hi heli13,
Yes, 18months in I do drive, long distance sight is not such a problem, you just have to think a bit more and turn your head rather than just glance with your eyes. It's the close up things that make life a bit difficult, like putting crockery on a table or pouring liquid into glasses etc, you lose the two-dimensional aspect of things with only one eye.
I started on 80mg Pred, and worked down to 12mg in June this year, then had a bit of a blip, and had to go back up to 25mg! Am down again to 15mg, seeing new GP and hoping to go down again by the end of October.
I also lost my husband in August this year, so life is a bit difficult at present, but as the song goes "life can only get better". Thats what keeps me going anyway. Take care, Dorset Lady.
Thanks for your reply, you are very brave and I admire your strength. I've just been put up to 60mg steroid and see Doctor at Eye Hospital this week. Just got to stay focused and keep going, like you do. Thanks again and best of luck with everything. Helen
DorsetLady: I am so very sorry that you lost vision especially after you were so diligent. I hope that you can help me. Did you ever have temporary loss of vision for a few seconds before the permanent loss? I have had the GCA since April of 2013. In July and Aug. I got the PMR. In Oct. I felt well but went to a Rheumy so that I would have a doctor in case the PMR came back. (I thought that it was some kind of arthritis.) November biopsy of arteries was positive although no giant cells were found. Had been taking many bursts of prednisone for "sinusitis." I had "flashes" in my eyes. The kind that often come with a migraine headache, but not temporary loss of vision. When I was down to 17 mg Prednisone the flashes came back. Prednisone at 30 mg prevents the flashes. Now I'm at 5 mg and may be off of it in 2 weeks. But the doctors don't know if the flashes are from the GCA or not. I had felt that I was OK unless I experienced some seconds of lost vision. I do have a neuro- ophthalmologist who looks in my eyes monthly and my retinas are good. I think that the disease increased my slight cross eyed-ness and near sighted-ness. What do you mean about the blurriness progressing up the eye?
Hi Asbeck,
No, I didn't have any temporary loss of vision prior to the permanent loss.
It's a bit difficult to explain what happened, but I will try. I first noticed it in the evening (Tuesday) when I was reading a paper, the bottom part of my eye seemed blurred, and I initially thought it was a mark on my glasses, so I cleaned them. In fact I took them off two or three times in all, but it didn't improve things. So then I thought I must have got some grit in my eye during the day, and it was just a reaction to that, so I washed my eye out with Optrex before going to bed expecting it to be better next day. It wasn't, but I wasn't unduly concerned, just rinsed it out again and thought it would be okay within 24 hours.
When I woke up on Thursday, and it was no better, in fact the blurriness seemed to have moved up my eye a bit more, I got an emergency appointment with my GP. His reaction, despite me asking if it could be related to the pains I been suffering in my head, neck etc (at that time undiagnosed GCA) said no, and he couldn't find anything untoward - I had no flashing lights, no temporary loss of vision other than what I have described. He suggested I make opticians appointment, which I did.
The rest of the day, the eye remained much the same, however during the next day (Friday), the blurriness again seemed to work its way up my eye, and by the evening, I could only see out of the top third. When I woke up on Saturday, I could see nothing out of the eye, so I spoke to optician who instructed me to go to A&E immediately - he thought it might be a detached retina! Unfortunately it wasn't! But they knew what it was - the dreaded GCA.
Sorry to ramble on, but I can't condense the explanation any more.
I'm sure the Pred is affecting my eyes rather than the GCA , (Ophthalmologist seems to agree) as I have slightly raised glaucoma pressures and beginnings of cataracts. Fortunately my reduction plan is going well at he moment.
Not sure what is causing your eye problems, as the higher dose of Pred seemed to control the flashing. I think you've just got to be aware of any changes, and speak to your Ophthalmologist between appointments if you are worried about anything.
Good luck, and keep in touch. You can always do a one2one message. DorsetLady
Others have all given you good advice. You cannot take chances with your sight.
Once you are on steroids (prednisolone) you should be protected from sight loss though. It is usually only if left untreated that the huge risk is there.
If you continue with blurry eyesight, though, get it checked out.
A & E not always aware of GCA symptoms so make sure you tell them exactly what
they are dealing with.
All the best
Thanks for your help, if my eyes continue to be blurry and temple hurts I'm going to doctors on Wednesday so maybe I have to have higher dose of steroid. You do feel a bit on your own with this problem, I don't know anyone else with it, so this forum is brilliant.
Thanks x
As an aside to this, how would you describe GCA symptons? At my recent annual eye test, I asked the optician if he knew what GCA stood for. 'Just testing', I said when he told me. But I then assumed that he knew all about it. He made a note of this website, when I told him about it.
Perhaps I am a bit hasty in writing this - reading the next posts give a good deal of information, but having a list would be useful...
Hi Heli13. I would advise act immediately don't wait until Wednesday. I lost the sight in my left eye 3 years ago, due to my GP not listening to me when I had claudication in the jaw and had great difficulty in eating, blurred vision and abnormally high ESR and CRP,. He told me to go on holiday and enjoy the sun. Two days into my holiday I woke in the morning and found I had lost the sight. I don't wish to scare you but you appear to have the classic symptoms of GCA. I would go to A & E ASAP. 60 mg is normally the start level for GCA. Good luck
Thanks for your reply, my doctor has just rung and told me to up the steroids to 60mg straightaway, so they are taking me seriously. Got eye apt this week at Hospital so shall be asking lots of questions. Sorry to hear you not as well advised, hope you are coping, very scary the thought of losing ones sight. Thanks again. Helen
Hi, Add me to the single-sighted list. Jan 2012 lost mine due to misdiagnosis so echo the others, get to a good Eye Hospital who know about GCA as soon as possible. Now driving again after 18 months of being dependent on others. Good luck, raymck
Thanks for your reply, everyone is so helpful on here. Doctor has put steroids up to 60mg so they are taking me seriously and I've got Eye Hospital apt this week so will be asking lots of questions. Glad you can drive again, that is a big worry of mine if I lost sight in 1 eye. Best of luck and thanks. Helen
Hello heli13, yes, I have found this forum so useful and we know we are not alone with the PMR & GCA. It is helpful to know of other people with exactly the same symptoms & often being misdiagnosed. 2 yrs ago I was diagnosed with a trapped nerve in the neck despite experiencing every symptom for these conditions ( not knowing at the time of course!). After 5 weeks of agony I finally had a blood test with extremely high ESR & CRP results. Immediate hospital attention then & biopsy to confirm. A very up & down illness with fluctuating steroids & Methotrexate medication. Good luck with your progress.
Thanks for your reply, it makes me feel better just hearing from everyone as No one I know has even heard of these conditions! I'm on 60mg of steroids now so I hope I start to feel better soon.
Helen
I have had Pmr for 2yrs9months now,I finished prednisolone about 9months ago but have had relapses on and off and have to have booster injections of the steroids.I have now had a painful right jaw and headaches,my head is not sore or my temples,does anyone think this could be the start of gca.I have only just joined this website but I am glad I have as I was beginning to think I was the only person with pmr,any reply would be good.
Hello and welcome. I think the advice from anyone on this website would be that if you have any symptoms of GCA then you must seek medical advice.
Jaw pain and headaches are both symptoms of GCA. There is nothing to be lost by seeking an emergency appt with your GP or going to A&E especially with a previous history of PMR. I would be specific about your concerns with whoever you see and explain that you are worried about the possibility of GCA.
Good luck and let us know how you get on.
Yes, indeed, my mother lost her sight completely overnight in December 2012. She had all the classic symptoms: scalp tenderness, flu-like symptoms, intense headache and pain up one side of neck and pain in shoulder. She had been diagnosed with possible PMR a few months previously, after an awful lot of confusion over many months - the arterial biopsy was inconclusive - and was put on steroids - the GP lowered the steroid dose but her symptoms returned. She presented at A&E with blurred vision but there was a lot of delay in treating her and staff failed to recognise the condition. She was sent to another hospital (from Canterbury to Ashford) where there was supposed to be an opthalmologist on duty, but that person did not turn up for hours after she got there. They gave her the steroids too late. She lost her sight in one eye that night and by the next day had also lost the sight in the other eye. She is now 100% blind suddenly at 82 and this has been such a massive shock and major adjustment for her (and the rest of the family) which she takes stoically. She was a very independent lady and is now permanently reliant on carers. Please take the symptoms seriously and insist you are given the steroids immediately if you have any sight disturbance.
Yes I lost the sight in my left eye .Went to the Doctors July 13 with terrible head pains and raised veins Dr saw shingles on the back of my head .was put on Tramadol which knocked the pain out. It was September when the sight went and if asked I would have said I was getting better very little pain ,veins hardly noticeable I dont know if this information helps you . Take Care x
Hi everyone, it's such a relief to read all of your experiences and find people going through the same thing. I was diagnosed with GCA just before Christmas, I had terrible double vision in left eye, headache on left side and jaw claudication and put on 80mg pred. and had a biopsy. Now having to reduce it and last week went down to 50mg. but the headache is back and I am noticing the double vision more (my optic nerve was damaged so I guess I will always have that though). But the television is blurry and I keep cleaning my glasses because the left side is smudgy and I think there must be dirty spots on them. I have an apptmt with rheumy on Thursday but do you think I need to go to the hospital before then? It's so scary to hear that some of you just woke up next day and it was too late. Or will the 50mg of pred guard against me losing the sight in my left eye, so should I just wait till Thursday's appointment? It is such a steep learning curve and I'm so grateful to be able to read your experiences and thank you just for being there.
Not what you're looking for?
You may also like...
A tragic but inspiring and heartwarming story about someone running to raise money for PMRGCAuk after a friend lost her sight from GCA
Moderation team
