GCA Symptoms

[Newcomer22]

Hello, I’m curious of those that have gone blind in one eye, or completely, from GCA…did you have any symptoms? We’re you misdiagnosed? If you had symptom, were they consistent, and present all the time? How long did you have symptoms before going blind? Was your blindness abrupt, or a slow loss of sight? Sorry for all the questions. This is a fear of mine after being diagnosed with PMR.

[SheffieldJane]

It is a fear shared by many of us and the replies you get will vary. Sometimes there is no warning other times there are eye issues such as double vision, blurring, temporary loss of sight. Be vigilant for the other symptoms such as jaw claudication and an unusual headache. I have 6 monthly eye tests done privately by a well equipped optician as do others. He monitors everything to do with my eye health and retains the slides to be aware of changes.

People who have experienced this will be along.

[DorsetLady PMRGCAuk volunteer]

Am out at moment having a coffee -internet not too good -but have a look at my story to start with in this link - will get back later when home -

healthunlocked.com/pmrgcauk...

..and others here -healthunlocked.com/pmrgcauk....

[Blackcat1M in reply to DorsetLady]

just read your article you are one brave lady.

[jinasc]

This link is extremely useful: British Society of Rheumatologists.

rheumatology.org.uk/practic...

When you get to the initial page. Look at the box headed Current Guidelines and there you have the up to date on both GCA and PMR.

You can download and print them if necessary.

[PMRpro Ambassador]

I think it is only about 1 in 6 people with PMR go on to develop GCA - a lot of people with GCA have only GCA with PMR-type symptoms not apparent or only appearing as they get to low doses of pred long after the GCA was diagnosed.

[ubaoz]

Of those of us who did develop GCA after first having PMR, not all necessarily have the vision-affected version. I guess it all depends on which particular blood vessels get inflammed. I had minimal eye related issues, but with prompt and effective diagnosis and treatment (IV methyl pred initially in my case), the possible danger of blindness was averted just the same.

I too was fearful of GCA when I had PMR, but realised that the knowledge gained from this site put me in a good position when it did happen – I knew what to look out for and what to do, so that was most helpful and reduced my anxiety considerably.

[Newcomer22 in reply to ubaoz]

What an encouraging message! Thank you! I definitely have my senses increased to the possibility of GCA. I’m at 3.0 of pred at this point, and continuing the reduction. Going back to Rheumy in 3 weeks, and GP next week.

[Paulamac77]

I did not have PMR. I had suffered headaches for several months but despite visits to my doctor I was diagnosed with sinusitis then stress. I didn’t realise what was wrong with me even when I couldn’t see out of my left eye. Just don’t do what I did and that’s wait over a weekend before seeking medical help! I didn’t realise the seriousness of my symptoms. By the time I was rushed into hospital I had permanent damage to that eye. As others have so ably pointed out, be very aware of unusual headaches and jaw claudication and seek medical attention promptly. Better to be safe than sorry.

[Newcomer22 in reply to Paulamac77]

Thank you for your response. That must have been such a stressful situation, not to mention scary! I did see an optometrist several weeks ago. I wasn’t impressed. Think I’ll seek another. I currently do not have any blur. I’m on the downward trend of pred. Just went from 3.5 to 3 yesterday. Started having some slight, what I call “pings” on the left side of my head. I’ve read on this site, that just reducing pred May cause GCA type symptoms. Recent SED rates and CRP were normal, but I know while taking pred that’s pretty common. Had ultra sound a couple months ago, but that did not detect anything on side of my head. Going to GP next week. Not sure a biopsy would even detect GCA. While on Pred. I’m just hoping at this point that it’s pred reduction that causes these slight symptoms. Again, thank you, and I hope you are doing well!

[ubaoz in reply to Newcomer22]

CRP and/or ESR can still be helpful, if they are raised for you. I was at 7mg of pred, had had normal (single figure) CRP/ESR for months, but with the onset of the GCA symptoms (in my case mostly the severe headache, although I also had some jaw and ear issues too, plus the feeling unwell and extreme fatigue) they shot up very high (>100 CRP and >65 ESR), despite already taking pred.

[Newcomer22 in reply to ubaoz]

we’ll that’s good to know. I generally go get a blood draw every 6-7 weeks. I hope you are on the way to feeling much improved! Thank you!!

[Paulamac77 in reply to Newcomer22]

I am delighted to say that I am finally in remission and my rheumatologist doesn’t need to see me any more. He did say, however, that the slightest concerns I may have in the future then I am to contact his department at once. I can’t ask for better support than that.

I hope your PMR follows a similar pattern and you finally become free of what is a most debilitating disease. Good luck.

[GCAinCarolina]

My symptoms were night sweats, sensitive scalp and increased difficulty chewing. No headaches. Started with blurred vision in right eye. I was on vacation away from home and suspected perhaps a detached retina & on return, made an appointment with my retina doctor. He saw me immediately and within 30 minutes had diagnosed GCA, which I had never heard of. Sent me immediately to ER where I was admitted for tests and confirming biopsy. Although I got prednisone infusion the first day, sight in right eye was gone.Good luck and don't delay getting checked.

[Newcomer22 in reply to GCAinCarolina]

Thank you! I did go to optometrist several weeks ago. I wasn’t that impressed. May try to find another. I hope you are doing well. I’m so sorry you lost vision in one of eyes.

[Balletomane]

I have GCA. Symptoms I had before losing sight in one eye:-

Occasional ache in upper jaw on one side. Dentist found no problem, no sign of my grinding my teeth at night. GP said that must be what it is.

Very occasional small spot of ache on back of head, went when pressed with finger. GP no explanation.

If woke up when dark, sometimes briefly saw flashes in eye.

Pain between shoulder blades for a few months. GP eventually sent me to physio who was very puzzled and could find no reason for it. (Since, have met others who had same back symptom, then lost sight due to GCA)

Then suddenly one evening at theatre, as if someone had smeared thick layer of grease across one lens of glasses. Optician next day looked in eye and told me to go to Eye hospital emergency. I know now I should have gone straight to Eye hospital from theatre (I'm in London).

[DorsetLady PMRGCAuk volunteer in reply to Balletomane]

“Then suddenly one evening at theatre, as if someone had smeared thick layer of grease across one lens of glasses. Optician next day looked in eye and told me to go to Eye hospital emergency. I know now I should have gone straight to Eye hospital from theatre (I'm in London).”

To be honest I doubt it would have made that much difference - going on my experience -the damage was already done.

My experience was blurring moving up eye over a few days - no previous flashes or other issue. I always said it was like looking through a thick dirty net curtain, but know exactly what you means by grease smeared over glasses.

I was told that partial sight in one eye can be more troublesome than none, or virtually none. It’s neither one thing nor the other.

10 years on I rarely think about -as you know there are minor things that are a pain, but so can still drive and generally get on with life…

If you’re interested my story -sure much will resonate-

healthunlocked.com/pmrgcauk...