Just chatted with a gentleman with GCA

[Grammy80]

A friend told me she had a friend who's husband lost his sight completely due to GCA and gave me his phone number after giving him a heads-up. He is 79 also and lost his sight 15 years ago. He said he suddenly lost one eye but his doctor was so apprehensive about prednisone that he was never 'hit' with a heavy dose on diagnosis. He has a wonderful attitude. Amazingly, he said it really hasn't changed his life that much....but quickly added, "I have someone to get me everywhere, a saint for a wife." He listens to audio books, one per day, does the treadmill, attends meetings. He attributes his full life to the Iris Foundation, his wife and friends.....in other words ..SUPPORT.

It was a joy to hear his strong voice and good attitude. After I see what this taper does and the Actemra effect.....maybe February???? I want to do what I can to get my life functioning better.

I'm so happy I came upon this forum....have a great day~!!!! I'm going to wrap some Christmas presents. You should see them~!!! I just have different tissue paper...roll the gift up in it and tie it with a bow or red yarn....easy peasy.

Did I tell you all my family is coming down from Canada and spending three days. I've seen their parents but haven't seen my grands, 12 and 14, since last July....pre GCA

I can't wait...doing stockings and the whole nine yards.....xo WooHoo

[PMRpro Ambassador]

Onwards - what a lovely story.

[Grammy80 in reply to PMRpro]

It was a wonderful conversation......calming. He felt like his experience was a piece of cake since he is surrounded by family.

[Hidden]

What a heartwarming story. So glad he has great support and thank you for sharing his story. Have a wonderful holidays with the family. 💜🌈👍

[scats]

Thanks for posting. I'm sure you will have given hope to others here.

[Grammy80 in reply to scats]

Hope...support....talking....that is what I need most and I suspect others do too. I'm in the dark in more ways than one but sure don't feel as alone as I did before I found you wonderful people.

[scats in reply to Grammy80]

Me too, we have a real supportive community here.

[SheffieldJane]

What a heart warming post! Have a very happy Christmas and a wonderful New Year!

[Grammy80 in reply to SheffieldJane]

...and the very same to you....to ALL of you!!

[Blearyeyed]

Thank you so much for your interesting and helpful contributions over the last few days .

You may be New , but I as a GCA sufferer have found them really thought provoking and useful in building up my knowledge and experience.

Take care and please keep posting xx

[Grammy80 in reply to Blearyeyed]

Why thank you....I have felt SO alone...but now I have all of you !!! <3

[nuigini]

A very up-lifting post...his story and your wonderful attitude. Have a marvelous Christmas and loads of fun with the grand children!

[Oumaof2]

What an inspirational story!! Thank you for sharing... Sometimes it takes something like that to get us moving and thinking how we can better help ourselves...

Enjoy those precious grandchildren and children...

Have a great family Christmas... 🎅🌲

[Jackoh]

Thank you for taking the time to share. Really positive! Do hope you have a wonderful time with your family and grandchildren.

[Dknutson1944]

Hi. 15 months ago I lost 75% of my vision in both eyes over a 3 week period - Drs failed to diagnose GCA over 7 appointments during that period. Drs put me on pred for about two months and then started me in Actemra while rapidly tapering me off pred. I get my Actemra by Infusion every 28 days because of insurance requirements.. I have no side effects other than fatigue. Don’t know if that is caused by 1. Actemra, 2. Underlying GCA or 3. A messed up internal time clock caused by constant dimness from vision loss. Or maybe because I’m almost 76😊.

Life is pretty good thanks to wife and friends who help me get around. Wish I could drive but perpetual dim sight and very little perrifial (sic) vision would make it very hazardous .

I can still read with big enough light and large enough print. Still like to watch sports on tv and in person but often loose track of the ball🙁.

Can still see beautiful grandchildren albeit with less clarity.

Hope you have good luck with Actemra as I have so far.

God Bless

[PMRpro Ambassador in reply to Dknutson1944]

Thank you for your story - I do so wish doctors who miss it as a possible diagnosis could read such stories. Yes, high dose pred has some downsides, but a relativiely short burst is better than risking a patient's sight.

[Grammy80 in reply to Dknutson1944]

Thank you so much for sharing with me..and everyone else. Our stories sound similar. I've a few more weeks on this taper(while giving myself Actemra weekly) before I breathe a bit of a sigh of relief that hopefully I will lose no more vision in my right eye, my left eye is gone. I'm a bit nervous, but feel positive about the sense of 'clarity' I feel having tapered from 64 mg a day (for 5 months, 120 mg the first two months)....32 this week. Yes, I miss my car too...I sold it immediately because I was afraid I'd wipe someone else out t o say nothing else of myself.

I do live alone and am paying for transportation to Dr. appointments...I'm hoping that the appointments become less frequent and I'm sure they will.

I can't wait to see my grandchildren December 27 when they will come down from Canada. They will not be clear but I was so fearful I wouldn't see them at all that I am thankful.

The state of Maine provides a wonderful audio book reader that I have really enjoyed. I've heard a few people say that being able to listen to the books has been a life saver. In many ways I think I'm still adjusting and haven't gotten into a routine but I do see progress.

Thanks again...bless you as well and Merry Christmas!!

[beringer]

I had to get off Actemra due to it causing Diverticulosis & a very large abscess. And it does have some real bad side effects.. wouldn’t do it again. Sorry, wish it could have been better news..

[Grammy80 in reply to beringer]

I've been away for the holidays with my Canadian family and just read this..... I know!!! I was not a good candidate because of a diverticulitis history, polyps and stomach bleeds. But, I have only partial vision left in one eye from the GCA (Dx Aug/2019) and have just started tapering methylprednisolone.....I really have no certain expectations...just being vigilant. I am now down to 24mg pred per day and a shot a week. Right now I feel my control is zero but this group is keeping me company on the roller coaster ride. Thanks for your input. I need all the knowledge I can get.