Tapering with gca okay

[Spanky2019]

Saw ophthalmologist on 8/15. Says "eyes are better, but not there yet. " Will do another visual field test in one month. Showed me test results on computer screen with dots filling in much of the outer parts of image which I understood to be damage in peripheral visual areas. Does this make sense? Haven't read anything about peripheral visual damage related to gca. Rheumatologist just called yesterday and said, "go to 30 mg prednisone and let's see how you do. We will readjust if needed." Was on 40 mg - 80mg a few weeks ago. Still difficult walking, weakness in lower back and glucose is high for first time this month. I never think to ask the right questions when they're on the phone. According to your taper schedule that's too big of drop, right? Also, rheumatologist was very "concerned " that I haven't started the i.v. boniva he ordered. So hard to add something else right now. Finally, gastroenterologist just put me on level 2 dysphagia diet due to swallowing issues. Still believe all of these health issues are connected. Actually, though not real well yet, I'm feeling much better than I have been for months. Not losing weight anymore, feel hungry & sleeping better.

[HeronNS]

I don't have any experience with the issues you raise but I agree if you feel the taper is a bit too big or too soon, trust your instinct. No one ever wins an award for tapering too quickly! Glad you are beginning to feel better.

[DorsetLady PMRGCAuk volunteer]

As you say, peripheral vision damage is not usually quoted in relation to GCA, but I think it may have been mentioned on here in the past, but I’m afraid I cannot remember who posted about it.

As you say, the reduction is quick, but you can only try and see what happens.

[Rache]

Glad to hear you’re feeling better after all you’ve been through. Sorry can’t advise on your eye issue. Hopefully someone else may be in position to.

[Hidden]

I have just been trying, trying being the operative word, to understand an opthalmology paper on GCA and it seems that peripheral vision can be effected. I can't go into further detail as I am trying to do it on a small smartphone. So I can't tell you anymore than the fact it was mentioned. I can link it if you want, you may make sense of it. But the fact it is common enough to be mentioned in the paper might ease your mind.

I would ring your opthalmologist and ask if the next exam was based on you still being at 40mg or if it is ok to reduce to 35mg or 30mg.

I am glad you seem to be doing a bit better. Onwards and upwards.

[Spanky2019 in reply to Hidden]

Thank you Poopadoop. You've been with me from the start and I thank you. I will call ophthalmologist.

[Hidden in reply to Spanky2019]

No problems spanky.. 🌻

[SheffieldJane]

I never think to ask the right questions either. I also worry that the visual field tests are inaccurate - they are so quick. I would come down from your high dose Pred more gradually than he says - taper, maybe 2. 5 mgs at a time, listening to your body all the time. I guess you might be feeling better coming down from the really high doses. You still don’t have a proper diagnosis though. If you get typical symptoms for GCA like jaw pain, unusual headache, visual symptoms, just get yourself off to A&E with any paperwork you have. It’s a puzzler!

I don’t blame you for not wanting to add in another heavy drug yet.

[Spanky2019 in reply to SheffieldJane]

Thank you. Yes, I will slow down tapering as you suggest. My main serious diagnoses are gca, osteoporosis and esophageal dysmotility. As I am finally getting my feet on the ground literally and figuratively, easy slow taper and wait for boniva is best plan for me. I have a little bounce in my limp today!🥰

[SheffieldJane]

Oh Spanky2019, a little bounce in your limp! Bless your cotton socks. I think we are all invested in your recovery here. Xx

[Spanky2019]

Thank you so much for your advice, encouragement and care along the way.

[Meggsy]

Can’t advise you Spanky, but sending love. 💕💕

[Hellyowl]

I have peripheral vision damage from GCA. It seems to get slightly worse every year and the opthalmic consultant gave me the impression it is common. I am waiting to see Rheumy because opthalmic consultant is unsure if I should continue taper

[gifford7]

re: peripheral visual damage related to gca

It might be a type of eye stroke called BRAO or BRVO.

"Branch retinal artery occlusion (BRAO): This blockage is usually painless and occurs suddenly. The patient usually loses peripheral vision, and sometimes central vision as well. Underlying causes include narrowing of the carotid artery, high blood pressure, cholesterol disorders, and/or cardiac disease.

Branch retinal vein occlusion (BRVO): This type of blockage causes bleeding and clotting along the retinal vein It may result in decreased vision, peripheral vision loss, distorted vision, or blind spots. This type involves one eye and may be caused by high blood pressure or diabetes."

healthunlocked.com/pmrgcauk...

My sister had BRVO in her good eye. Vision improving; she didn't mention peripheral damage. Pred maintained at 7mg by opthalmologist.

[Spanky2019 in reply to gifford7]

Thank you gifford7. Interesting and a lot to learn. Hope you have a beautiful day.

[cranberryt]

I detest those visual field exams! lol I have had to do them every 2-6 months for the past 6 years for another condition I have (psyeodtumor cerebri) that causes peripheral vision loss. It is my understanding with those tests that they are looking to compare them over time to see if the amount of loss is getting worse or staying steady. Also the test will repeat missed blips multiple times to give you a proper chance to see them. I have wondered about the peripheral vision loss question as well since I had my last test in May right when my PMR symptoms were starting but I hadn’t been to the dr. or diagnosed yet. At that time my ophthalmologist said my visual field was much worse as it had been holding steady for years she was going to chalk it up to an anomaly and see me in 6 months. But I do wonder if it is related to the PMR or even GCA.

[Spanky2019 in reply to cranberryt]

Seems there are always more questions than answers. As long as there is improvement I'm good. Well, at least the visual field test beats having a colonoscopy. Lol

[cranberryt in reply to Spanky2019]

Yes. I should be thankful there is a test to track our vision but I really do hate taking it. lol

[Pippah45]

I believe all issues are connected in some way. How can they not be in the same body?