Just discovered this group, what a great community and source of information
Was diagnosed in 2021 with GCA after first having diffuse symptoms during a year, night sweats, flu like colds, strange headache and culminating with what I thought was an eye infection (conjuvitis). When I discovered that I had double vision (up and downwards) I thought it was a stroke first and went to the ER. After a full investigation a minor stroke was found, but also that CRP was very high (70), so I was referred to a specialist. The day before the appointment had partial vision blurr in one eye, only like 20-30 sec. After diagnosing he put me on 80 mg of prednisolon and ordered a TA biopsy. Had another vision blur the day after I started with the medication but nothing more since. Have been tapering and was down to 2,5 after about 1 year, but ordered to increase to 5 and then 7,5 after CRP was a bit elevated, currently back at 5. Did not experience the ”normal” symptoms during the flare, maybe a diffuse feeling in the head, like a very vague ache behind the eye, and some muscle stiffness. Feeling pretty OK right now, apart from some muscle stiffness/pain, comes and goes and might be sciatic (had a herniated disc previously), and pulsating tinnitus.
What differs me from many in the group is my age, ”only” 59, so either I was lucky to get it while the body could better handle the side effects and complications, or I have 20 years of more or less pain and discomfort to ”look forward”. Like my dad says ”growing old aint for sissys (think John Wayne said it actually) and ”welcome to the golden years” (he is 90)
But guess I was lucky considering the complication with the eyes (sofar at least), and my illness sofar has been very mild compared with many of you in the group.
Again, many thanks to the contributors and posters
Written by
Gilmor
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Welcome! This group is a real help in a world where GCA and PMR are not always recognised and treated in a timely fashion. Lots of useful information in the FAQs
Yes, hope for the best and prepare for the worst ; )And google is of course both a blessing and a curse in these circumstances. That is why this group is so great, real people with real experiences (although the persons without issues might be lacking so it could be a bit biased?)
Has anyone considered doing a survey/poll? Might be useful info if the group is large enough
There are lots of people with fairly straightforward journeys - because many people join early on at a point they don't know if it is going to be hard. People stick around just because of the nature of the group;
Actually once I was diagnosed (and that’s was a saga in itself) my journey with GCA was quite straightforward-maybe have a look at this -healthunlocked.com/pmrgcauk...
..and my profile if you have a few hours free! 😊..or cannot get to sleep at night 💤
Thank you for your very useful post which reminds us that GCA can manisfest itself in all sorts of symptoms, apart from the standard ones that doctors seem to hone in on . Many medics are completly oblivous to their lack of knowledge in this respect, so if you don't have temporal pains, jaw claudication or scalp tenderness, or if you're not older than 70, they think it can't be GCA. Also watch out for ear issues as a possible sign of a relapse - I know this from my own experience. You can find out more about this on FAQs on this forum. You have tapered pred within a year fairly quickly compared to the experience of most posters on this site, and as you say, there are not enough posts from those who have a fairly smooth and speedy taper. I agree it would be helpful and encouraging to hear about more such case studies.
Welcome, welcome! I was finally diagnosed with GCA in 2019 after losing some sight so I am thrilled for you that you Drs responded the way they did and got you started. The night before I had those same strange visual disturbances...but had no idea. This forum and the people in it truly kept me on a positive note..and enabled me to be an informed patient. So happy you are here!! 💕
Hi Gilmor 👋 I was diagnosed last year too (at the age of 53). I’ve had eye problems but they tell me they are not related to my GCA. All my GCA symptoms are confined to the right side of my face, and it’s my right eye that’s problematic- it often bulges, I get burst blood vessels in it occasionally and it can feel like there’s pressure behind it. I’ve been told it’s Graves Disease (although my thyroid has been kept under control with drugs for about 20 years now) but I’m skeptical about there being no connection with the GCA.
Thanks for sharing your story and welcome to this friendly place 😊
Burst blood vessels are probably due to Pred -I used to get them at higher doses-first time they were checked by ophthalmologist-he wasn’t worried -so long as they go within a couple of weeks no issue - just look pretty grim at the time!
Bulging eyes could be thyroid issues -in our family -but fortunately was picked up in my late teens and sorted (mother on the ball!)
Have your pressures been checked by ophthalmologist/optometrist? -Pred can raise them.
Thank you Yes, I've seen an eye specialist, who checked the pressures. Hopefully they are correct about Graves Disease and it's not connected to the GCA. Just seems a bit of a coincidence that it's all on the one side.
Yes just one side is not usual for GCA - won't say never - but over they years I have noticed that if only one eye is affect it's very often the right one, so I think I might want a bit more certainty that all is okay.
That's what my GP said 20+ years ago, but she arranged a thyroid test 'just in case'. Turns out my thyroid was severly overactive, but meds sorted it out and it hasn't bulged since - well not until recently. I was diagnosed with GCA in June last year, so I did wonder if that's more than a co-incidence but the doctors seem to think not.
Hi Gilmor and welcome to the group. I have also just been diagnosed 3 weeks ago after many missed opportunities and have been lucky to have got this far with only minimal eye damage. I started on 40 mg pred and have started tapering a week ago, took my first 30mg this morning. This group has been my best source of advice and information. I’m 65. Good luck and keep us informed how your journey goes.
Is it your Rheumy who has told you to reduce and has s/he given you a tapering plan?
40mg to 30mg is a big drop, normally it is recommended no more than 10% at a time.
It took me who started on 60mg to get down to 20mg nearly 6 months.
It would also help if you could fill in your profile, ie date diagnosed, what dose started on, other illnesses and current meds. This helps us to answer any questions you have a bit better with background info.
Thanks for replying. The tapering schedule came from my Rheumatologist and was basically ten days on 40mgs then down five msg a week so last week was 35mg and I have just dropped again to 30mg this morning. So far it is ok although I can see that I wasn’t on the start dose as long as many on here.
I thought I had amended my profile but I may have done it wrong! Will go back and check. Thanks again.
I was surprised how quickly the rheumatologist started to decrease - I did 10 days at start dose of 40 mgs, a week at 35mg, and now I have reduced another 5 mg today. So far it is ok, though. Thank you.
Trouble is, you may not be on the lower dose long enough to be sure it is still enough so if symptoms return you don't really know where it went wrong.
Ok…but do monitor things. And obviously if you start to get issues you need to speak to Rheumy asap. The problem with reducing weekly is it can take longer than that to know whether current dose was enough. If it wasn’t and you do that a couple of times, you end up flaring…,
It can take at least 2 weeks for some people to know current dose isn’t enough… not sure all doctors appreciate that.
Thank you, I also asked my Dr if you could have the visual manifestations while asleep, and he confirmed that it could happen. If that is true guess I (and others) are ”lucky” to experience the disorder while awake, otherwise I might not have been able to react until too late ?
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Yes, I've seen an eye specialist, who checked the pressures. Hopefully they are correct about Graves Disease and it's not connected to the GCA. Just seems a bit of a coincidence that it's all on the one side.
up it goes again ! 
Father diagnosed with GCA with extreme vision loss
Newbie with questions
