Hi everyone just returned from my rheumatologist routine appointment I have PMR and was doing well down to 6 mg prednisone started at 20 in April
I was telling him I developed a floater in one eye in sept It’s so annoying because it goes back n forth and blurs out my vision I immediately went to my eye dr and was informed it was “ just “ a floater but a permanent one that will never go away l, it just happens ! went back a month later for a recheck She said my eye was healthy it’s just a floater but now my rheumatologist said it could possibly be GCA I do get minor headaches and occasional tingling in my scalp but no other symptoms but now he’s putting me on high doses of prednisone to see if the floater goes away
If it does than I have GCA I’m really concerned and kinda petrified from what I’ve read on here and on line about the vision issues and the possibility of aorta aneurysm Anyone else feel as scared as I do ?? For anyone who’s had a biopsy how was it done, painful ???
Thank you all for listening ❤️
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Mychis
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I certainly have shared the scary feelings on and off through my PMR (4.5 years) and then my GCA/LVV a few months. I applaud your Rheumatologist for thoroughness. I had large floaters long before any diagnosis and didn’t even mention it because my Optician had dismissed it as normal for my age. My GCA/LVV was diagnosed by a specialist ultrasound scan that showed signs in my armpit. I also had a scan of my Aorta that was functioning as it should. I go to my well equipped Optician every few months for a complete eye health examination. I have had a head MRI, a full body MRI and CT scans, to discount other issues. This is all to keep my eyesight fears at bay. My Rheumatologist has said that it is very unlikely that I will lose sight. Like yours, my symptoms were relatively mild. I came down from 40 mgs of Prednisalone quite quickly and was prescribed Tocilizumab.
Take heart that if you have GCA your Rheumatologist is on it pretty fast. Prednisalone will keep you safe, this is a treatable disease.
I haven’t had a biopsy, someone else will have to tell you about that. Enquire about the Ultrasound Scan - it is just as accurate - if not more so and not invasive at all.
I was down to 3 mgs Pred when my GCA was diagnosed. Very disappointing but I had a hunch that all wasn’t well. Let us know how you get on and talk about specific fears, there is a wealth of experience on here and lots of generous people who will share it.
Oh thank you so much I feel soo much better and yes I’ll mention the ultrasound if it becomes necessary!! They will know next Wednesday after my blood work !!
I have had floaters for donkeys years, so may be the same as yourself. However, it's always good to be vigilant where GCA is concerned as it happened to me too. I managed to get down to 8mg from 15mg after being diagnosed with PMR. GCA kicked in. My symptoms were: Jaw pain, and tender head and headaches. I panic big time about my sight and asking for an appointment this morning as I have an issue too and would like it checked out. My eye pressure shad gone up approx 6 weeks ago, optician said he'd see me again in Dec....too long for me to wait, would sooner get them checked now. Or rather one eye, as lost the sight in my left eye years ago (but not due to GCA).
I too have floaters but have had them for a long period of time. After a period of time I find that I hardly notice them. Occasionally I think a gnat is flying around when it's one of my floaters, but that's about it. I am wondering why you said you had a hunch.
Perhaps the Rheumy doesn’t understand what a floater is and the fact it wafts about and the opthalmologist is happy, makes it unlikely to be GCA. I would hope the Rheumy has spoken to the Opthal in order to satisfy themselves it really is not just a floater, especially if they are pinning your Pred trial on it going. Your other symptoms are more possibly GCA but by no means definitive and their response to Pred would be more indicative.
As for terrifying yourself with all the possibilities, it just isn’t worth worrying about every potential bad thing with any illness without any real evidence. Like with any condition there will be those better off or worse off than you and you have no idea where you are on that line. So, read posts and park them, not run many bends down the road. If you did have some large vessel involvement then high dose Pred is the right thing. The biopsy is done under a local anaesthetic. Apart from the initial sting of the juice for a few seconds, I didn’t feel the biopsy site at all. High dose Pred can make one feel extra worried so it is a good idea to perfect having little talks with yourself to rein in the what ifs. One step at a time.
Sorry, not much help to you, but reading with interest. I hope all goes well for you, please let us know what happens next! I had a floater last week. Didn’t think twice about it, tbh, I’ve had them before. My Mum has a lot of them. It lasted about 4 days. All you experienced GCA folk...is this a symptom, please? Our optician has been shut, I’ve been shielded (other issues as well as PMR), so no test for 18 months now...but I have never read that ‘floaters’ are a warning sign...but I’m more aware of GCA now I’m down to 6mg. I rarely get headaches, but get occasional (twice a year-ish) migraines. My Dad has macular degeneration, I started wearing ‘thick’ spectacles age 7, am very very short sighted & aware my sight is incredibly precious! Thanks, S x
I’m new ( three months) to this condition, (GCA) , having my first eye check for two months today - and I’m concerned my sight hasn’t improved in the past couple of months, in fact may be very slightly deteriorating... I’ll find out later. Was told it could take up to six months to establish what sight level I’ll be left with... but rheumatologist said “none of her patients had ever lost their sight whilst on prednisone “. Didn’t have the biopsy as I was told it wasn’t always completely accurate ... didn’t know about ultrasound option. It’s a bit Russian roulette, I’m beginning to think. But everyone here gives such good advice ... day at a time, keep asking questions, stay positive as much as possible
Two years ago l suddenly spotted a Black Floater in my eye & l could ‘see it’ in the mirror it was most strange....
I decided as l am very short sighted that l better go to A&E in case it was a detached retina but after an Eight Hour Wait they described it as PVD (Posterior Vitreous Detachment) and had to attend the Eye Clinic at another hospital the following day, l was given an appointment & seen on time. It was confirmed as a PVD & l was promised the increased risk of one in the other eye.....
Six months later, yes you’ve guessed it, l had one in the other eye but by then l was a bit more savvy & knew about the Specialist Eye Service at Approved Ophthalmic Opticians, there is No Charge & it is Not an Eye Test but a thorough Examination of your eye health.
There is a Post on Pinned Posts explaining all this & l will copy you in the link shortly.
Anyone can take advantage of this Service, your GP Surgery can give you a Contact Number & it’s worth having to hand.
I found out about MECS from one of your earlier posts and I'm very grateful. I have problems with my left eye and I've made an appointment with an optometrist for Friday. I'm pretty sure it's something minor, probably one of the many side effects of pred, but I'd rather see somebody who specialises in eye conditions than my GP. It was good to be able to self-refer rather than having to go through the GP too. I'm glad the NHS still comes up with some good schemes.
It’s a fantastic Service, you’ll be there about an hour, after the first examination they’ll put drops in to dilate the eyes, you have to wait about 15mins for them to work then you’ll be re-examined.
It’ll be safe as there will only be Patients needing Emergency Appointments. You won’t be able to drive home because of the dilation so bear that in mind.
Let us know how you get on 🍀
MrsN
If they do find any issues that need further investigation then you will get a direct referral to the Eye Clinic.
I was very impressed by the lady on the phone, so I look forward to seeing her in person. No driving for me ever, so not something I have to worry about. It'll be a socially distanced masked ride home on the bus!
I had bilateral biopsies last Monday. A plastic surgeon did it and did an amazing job!! Right in front of the ear on my hairline. Did not shave my hair and just surgical tape until Friday when I get my stitches out. It was not painful especially compared to the headaches I’m suffering from. I chose to be put out with the drug they give you for a colonoscopy. I wish I could share a picture of what a great job he did. Good luck !
Now I'd say that's who SHOULD be doing them!! The average vascular surgeon won't be as familiar with facial structures and as for a general surgeon ...
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As long as you don't fiddle with the mask of course ...
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