New here...wondering about visual disturbances

[Cobalt2sister]

has anyone had this kind of visual problem: not the whole eye darkening but just in the corner, peripheral like a thin band of black. As if a blinder on it...came and went but all I could find was information on it effecting whole i. They raised prednisone from 60 tho 80. But it happened again. Any thoughts? Thanks.

[DorsetLady PMRGCAuk volunteer]

Any visual disturbance should be checked.

Mine started, not quite like yours, but as a blurriness along bottom third of eye, gradually working it’s way up eye….although it didn’t come and go….just came and stayed.

Do you have an emergency contact number you can ring, if not then you need to visit ED/ER - just to be on the safe side - would suggest you need more Pred for a few days.

Please keep us informed….and fingers crossed.

[SnazzyD]

Hello, sorry you’ve got the stress of all this and the necessary high dose of Pred doesn’t help that bit either. Eye symptoms that are significant don’t have to involve the whole eye, so you do need to report it, especially as they said to do so and took action the first time it happened. Presumably an ophthalmologist gave your eyes a thorough examination initially? What channels of communication have you been given?

[MrsNails]

You really need to see an Emergency Eye Doctor ASAP any darkening of vision needs to be checked especially as you have GCA

[Cobalt2sister in reply to MrsNails]

Hi thanks for reply. Went to ED and first they said I'd be admitted and put on IV steroids for few days and neuron ophthalmologist would first see me. No N-o Dr ever came & they came back and said to up my prednisone to 80 and go home. I said I'm on 80 & they said no you're not!!! I explained it had been raised by my doc 2 days ago but she told me to go to er for iv. Dr just said take the 8o and follow up w/ my doc. I'm concerned cause it happened while I was on the 80. I messaged my doc but I don't think she's in til mon. My ESR had dropped down to almost normal. Never have had through eye exam. Am bit worried. Sorry to blabber on and on!! Thanks.

[DorsetLady PMRGCAuk volunteer in reply to Cobalt2sister]

Totally agree with MrsNails -ED -and never mind the ESR reading -your sight could be in jeopardy-that needs emphasising,

[Karenjaninaz in reply to Cobalt2sister]

I just wrote in another post. If its a clot then steroids might make it worse without anticoagulants.

[MrsNails]

No - we’re hear to listen to you - you really do need a proper eye exam & l know it’s Sunday but l think you need to go to the ED as it could make all the difference to your sight. Wishing you lots of Luck 🍀

What time is it there in the US?

MrsN

[Cobalt2sister in reply to MrsNails]

Hi. Its 7am US. I really need to be assertive I see..its so difficult for me. But I know should. Wish I had someone to go with me and advocate and understood about GCA. Thanks to everyone for support and replies

[MrsNails in reply to Cobalt2sister]

I’m so sorry you have no one to go with you but this is so important - if you get ready & go now. Explain you have GCA are on steroids but you are getting these symptoms of a black band across your eye.

Let us know how you get on 🙏🏼🍀🙏🏼

[PMRpro Ambassador]

My vote is also for the ED immediately - and you need the i.v. corticosteroid. 80mg is high - the i.v. can be up to 1000mg/day and FAR more effective quickly. And a study found that in the long run, most patients were able to reduce the dose better and in the end took LESS pred in total.

[jinasc]

I have joined in the others - go now and refuse to leave until you have seen a specialist. Kick up a fuss if necessary and take someone with you

[Nextoneplease]

Hi, another vote here for going to the ED. .Take a deep breath and assert yourself - I know it doesn’t come easily to all of us, but please 🙏 take care of yourself.

Let us know how you get on xx

[SheffieldJane]

We will be with you in spirit! 🙏💞

[Sharitone]

Yet another vote. I wish we could all come with you! Perhaps you could pretend to yourself that we have!

[Cobalt2sister in reply to Sharitone]

Love that idea...pretend you're all with me. Beautiful!

[Karenjaninaz]

This is called amaurosis fugax

This can be caused by an embolism. It needs immediate workup and maybe anticoagulants. Don’t wing it.

[Cobalt2sister in reply to Karenjaninaz]

I am on a blood thinner. You're right don't wing it

[Grammy80]

I'm in the states and wish I could go with you!! My experience has been it wouldn't help from a medical perspective. Initially, I was put on 125 per day, after the IV steroids for three days. I probably shouldn't say this but if the ER doesn't have your records right~I'd increase the prednisone. It will only be until you can get to see the neuro-opthlalmologist or a rheumatologist tomorrow or are you going back to the ER? Every soul here is with you....kick up a fuss!!!

In the UK, you folks have done so much research and fast track etc. In the states I found knowledge of GCA at a premium. But, Colbalt, you go armed with what you know is right. Don't sit with any visual irregularities ....none!💕💕

[Cobalt2sister in reply to Grammy80]

Thanks Grammy. I'm embarrassed to say I didn't go back to ER...eye quiet and I looked into a specialty eye hospital but tomorrow ill speak to my Dr and tomorrow I have the biopsy. I agree, I had thought to raise pred on my own. I almost feel scared into inaction just trying to make it til tomorrow but if anything stirs up in eye will go to specialty hospital I found. Very curious..what was it like getting the real high IV dose. I see per my weight my dose would be 780 mg. Wouldn't that whack one out of their mind or wreck your body? Its scarey. What was it like and how do you taper from that?? In another post it also came up about anti coagulents. I take a blood thinner ( an antiplatelet). I thank everyone for support and encouragement and hope you don't feel I'm awful for failing to go back to ER...i am a fool though perhaps. I've only been dealing with this for 2 weeks so I really am just beginning to cone to terms with it and take appropriate steps when I can. All of your support and encouragement will enable me to act. Thanks.

[Sophiestree in reply to Cobalt2sister]

You have had a pretty scary event. And like others not one to be ignored so hopefully you can get some answers today. I had 3 days of 1000mg each day via a drip and it was instant relief. I felt elated and was so happy to feel like that. I then went on to 40mg a day as the eye clinic felt i didn’t need the usual 60mg that is often prescribed. So don't feel wary if they offer the huge dose, it might give you a better outcome long term. The side effects were certainly there but once you understand them they are easier to deal with and will reduce over time. Let us know how you get on.

[Lollybygolly in reply to Cobalt2sister]

I had the same scenario after my first Covid jab. Seriously bad headache, eye pain/interference/flashing and cloudiness. Important to get on to high steroids (I had 60mgs) amd drink plenty of water, rest snd stay very calm and chilled. Warm flannel helped face pain. Opthalmologist saw no increased pressure in eye just swelling of membrane - by then my sight was 20/20. It’s scary but you are ok if you keep on the plan. I took 150-300mgs of aspirin when I felt my head would burst and it helped. Sleep is your friend as are healthy foods and comforting music/talking books. Good luck! Get well soon.

[Grammy80 in reply to Cobalt2sister]

The 1000mg IV for three days gives your system a jolt, it is like someone throwing you a lifesaver, literally. After that you can just go on the tablets. It is true the steroids will have side effects but it becomes a matter of weighing benefits against disadvantages. With a good MD and a good rheumatologist...these can be balanced. I'm living proof of that. I also have found a good neuro-opthalmologist a real plus.

I've been told not to take any aspirin products, only Tylenol, as long as I'm on steroids. Aspirin, Ibuprofen or Aleve; any of those upset my stomach normally and it not advised with prednisone.

I'll be anxious to hear about your biopsy and blood tests, CRP and SedRate (ESR). Let your vision be your guide. You have an army of sisters with you now. 💕💕

[Bcol]

Morning C2S, please don't feel embarrassed, awful or a fool. Having to deal with a) GCA on your own and then having to stand up to medical professionals and insist that they do something which they may not understand is incredibly difficult and goes against everything and the way most of us have been brought up. Yes, I agree with all the earlier comments but if things stay stable until today's appointments then OK. It's, what, about 01:00 with you, not sure what part of US you are, but if you get any other signs then please go straight to your nearest Ed and don't leave until they do what is needed. Good luck, keep us in touch and remember everyone here is behind and with you.

[Cobalt2sister in reply to Bcol]

Thank you! Its after 2am here...prednisone sleeplessness!! Though I did get a nap in. I'm in nyc. Yes, trying to get better about advocating for myself with medical professionals who sometimes can be invalidating. Had good day today, felt more mellow and eyes quiet. I had messaged my Dr yesterday and know first thing she gets in Monday she'll get back to me, she's very good about that. Then biopsy noon. Tell me :what happens if biopsy comes back negative? Can I still have GCA? Or does it mean its something else? Thanks again for your support. How are you doing?

[Bcol in reply to Cobalt2sister]

Hi, not an expert on GCA as so far I've managed to miss that one, but others will be around a little later to help with that. My understanding is that you can still have GCA even if the biopsy is negative it may be that the sample taken is from an unaffected area. But, as I said others with far more personal experience and knowledge will be along later. I'm doing OK thank you. Glad things are stable at the moment but if that changes then please don't hesitate to head to ED.

[Telian in reply to Cobalt2sister]

A negative biopsy doesn’t mean you haven’t got GCA. It means they didn’t get the inflamed bit. That happened to me. I had a positive Ultrasound. Do take the medics to task as difficult as that may be. Without your sight will be far worse for you. Best wishes. 🌺

[Cobalt2sister in reply to Telian]

Thanks. I'm seeing there are other ways than just the biopsy. Good to know.

[Telian in reply to Cobalt2sister]

Unfortunately Ultrasound isn’t readily available everywhere - due to lack of trained doctors. It’s not one lesson and off you go there’s much more to it.

[PMRpro Ambassador in reply to Cobalt2sister]

Takes about 6 months to learn the technique and it does require a certain gift, not everyone manages the compression aspect. And then you need to do that technique regularly to keep your hand and eye in - my colleagues doing other u/s reckoned they could feel a difference after 2 weeks holiday!

[Sophiestree in reply to Cobalt2sister]

Mine was diagnosed via a PET CT scan. I got home from the scan at midday and was rung at 2.00pm to go straight back for the drip.

[Cobalt2sister in reply to Sophiestree]

That's interesting hadn't heard about that diagnostic tool. How was being on the drip and were your eyes ok? Take care

[Sophiestree in reply to Cobalt2sister]

It was fine. I went to the day ward for the drip three days running.Felt quite wired after, but instantly better, understandably!

My eyes are just weird. I have floaters bang in the middle which are the most frustrating things ever, and now cannot read anything without +2.00 readers on which is a new experience for me. I have always been short sighted so only ever had glasses for driving. I am finding it a difficult transition. But I get my eyes checked every six months now. I have a distant cataract apparently that he feels will take a good few years to come to the front. It is all frustrating.

[Cobalt2sister in reply to Sophiestree]

Hi. I feel for you're frustration. Sorry you're going through it. We stand with you. Hang in there

[Hidden]

Good luck with biopsy today

[Cobalt2sister in reply to Hidden]

Thanks!

[Hidden in reply to Cobalt2sister]

How did it go?

[Cobalt2sister in reply to Hidden]

Well, I made it through tho have quite a bit of pain, swelling black and blue but it's done!! Hooray. They say 3-5 days for results. Dr thought now I'm doing alright on 80mg...I'll take it day at time and if I need to go to er ( may not be need at all) am going to the eye specialty hospital. I'll let you know when I get biopsy results and then see Dr on the 24th. Tomorrow I'm going out to visit my sister. Should be nice. Thanks for support! Take good care. I hope you're doing well.

[Nextoneplease in reply to Cobalt2sister]

Well done Cobalt2sister 😊

Enjoy your time with your sister tomorrow xx

[Cobalt2sister in reply to Nextoneplease]

Thank you...will do

[Hidden in reply to Cobalt2sister]

Take it easy

[crafty_grannie]

Hi Cobalt, five years ago I lost most of the sight in my right eye. It started with a narrow black line along the base one night. Didn't feel any different. The next morning the black line had moved most of the way up my eye. Went straight to hospital who sent me to a specialist nearby. They saw me immediately and I was prescribed 60mg Pred. Did not get any of the lost sight back but at least I didn't lose the other eye. I still have difficulties with double vision and depth perception. Following up on Orpheus on the forum the other day, who suggested seeing an orthoptist. Appointment booked in two days time.Do hope you don't lose any more sight. Thinking of you.

[Cobalt2sister in reply to crafty_grannie]

Crafty-grannie thanks for sharing. Really scary. Thank God you saved other eye. And how quickly it all happened. I'm on 80 now and will talk to my Dr today...see if I go up higher or what. Hang in there. Be safe and well

[Boss302Fan]

I live in Maryland.

Direct answer to your question, No I haven’t and initially was started at 80 mg Pred / day.

Have you notified your Optometrist that you are on Prednisone and the dosage? Prednisone can cause high intraocular pressure that if left unchecked can result in quite a few complications, even blindness.

In my case my intraocular pressure got to 31 (don’t know units of measure) and no other issues (I though high intraocular pressure meant glaucoma - wrong! Can lead to it and other conditions). She put me onto medicated eye drops 2x/day. Once my dosage got below 5 mg / day the pressure dropped, and by 2.5 mg she took me off the drops and monitored me after 2 wks, 4 wk, 2 mo…etc.

Anyway, once on Pred my Optometrist examined me every 3 months.

[Cobalt2sister in reply to Boss302Fan]

You're exactly right. Will return from my sister Friday and will make appt with my eye Dr to have pressure tested. Strong family glaucoma history. Myself had laser years ago for narrow angle glaucoma and than 3 yrs ago on drops for high intraocular pressure. Off drops and was doing ok but now it could be up again with prednisone. Will be vigilant about it. Thanks