Well, I've lost more of my vision in my right eye. Anything I try to read is jumping or spotty...it is not clear...but it doesn't look like the smeared world I saw on Saturday. It was like someone had put vaseline on my glasses and I couldn't read anything on the eye chart except that initial huge E, even it was fuzzy.
I'll be on 20mg prednisolone for three weeks, then evaluation. It happened in April when I got down to six and it happened again Saturday. I'm just not interested in taking any more chances with my eyesight. I want to stay in my apartment.
At almost 80, I have so much to be thankful for. I'm at peace with where I am. I'm just hoping I can remain independent, communicate with all of you, my friends in the states, and paint. I'm content and even though some more sight has been lost I can still see plenty.
Life can be so damn demanding in different ways and has been at different times over the years..being where I am right now... isn't really such a bad deal. xo💖
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Grammy80
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Marilyn, you are absolutely amazing! You are an inspiration and my hero. I'm so glad that you were able to see your doctor and be treated so quickly. Timing is so important when it comes to our precious eyesight. Thank you for updating us. You have been in my thoughts since you first posted. You are in a good place...stay there and be well.💖and hugs.
Thank you Jean...things look so much better than they did Saturday! That was scarry. I'm just staying on 20 mg per day for a bit and we'll see. Thanks for the support.
Being on the forum and listening and learning what many of these ladies have been through and carried on ....has been a tremendous inspiration to me.
Right! That is quite a lot to take in. Your positive attitude is brave and commendable. What kind of chances do you feel you took? Do you mean your Pred dosage or the demands you made upon your sight?
Is there an organisation that you can consult that will help/advise and train you to make the very best of the visual impairment that you have? I would want to know what kind of equipment and technology are available to help me. I expect that right now I would want to stay in my apartment and assess the change without taking any chances. All change requires a period of adjustment. Having things to be grateful for and being at peace are tremendous gifts. I am sure you will retain your independence. Life is so damn demanding at each different stage - relentlessly at times - in amongst the inexplicable gifts and treasure. Sending love and hugs at this challenging time and my best regards to handsome Gus. 😽 keep us in touch with your progress. Love Jane xoxo 💖🌺💖
Jane! You are up late, if I'm right??😍😍 When I refer to taking chances, I mean that I'm not willing to work really hard at reducing my dosage of Prednisolone if every time I'm ready to go from 6mg to 4mg...I lose some more sight. I'm not willing to risk it again. My labs were normal too....symptoms rule.
There is an awesome organization here, The Iris Foundation. They have helped me so much. Since Covid there have been no visits but they helped with lighting and gadgets...and tips. She even organized a painting area for me....I think lots of people knew that would be my pleasant escape before I did. I'm a wanna be artist but enjoy it.
You have such an organization in the UK but I think a different name possible. Thanks for all the love, hgs and support~!!💖💖 Right back at you. Really, even though things are fuzzy, they are so much better than Saturday!!
The Iris Foundation is the kind of organisation I meant. We have the RNIB but I’ve heard that it’s a bit behind the times. The technology available is amazing though.
What kind of paintings do you do? I have completed two portraits of my grandsons ( got a likeness but not the sweetness) and some little skull tee light holders in Mexican patterns.
Yes I am awake in the early hours, with a sore throat ( not great with Tocilizumab) and worry about my son’s future career prospects.
Are your doctors connecting the sight loss with your taper? We really do work in the dark. I am coming down rapidly too.
I hoped that you might pass on a slice of that "worried about my sons future," cake. I would imagine that besides being a great inspiration to many of us fellow travellers you are just as good at loading up what you need to make "tough," even "tougher,"
Would you be annoyed if I told you that I love all of your good stuff,advice and everything,but I don't want the "tough," lesson.lol.
All joking apart I can only imagine the cumulative effect of your "load," at this moment in time so I'm hoping it will get better,quickly.Take care.
“I'll be on 20mg prednisolone for three weeks, then evaluation”.
If things deteriorate in any way in those 3 weeks you know what to do. Fingers crossed they won’t! But should they, then don’t ask us - go to ER immediately.
Told her not to do anything of the sort and that even 20mg was still low. She was going to call him but like lots of people I dont think she finds it easy.
Definitely, the man is a danger. You can not risk your sight. How much pred have you got? Can you get a prescription from your ordinary doctor. You need a new rhrumy like DL says and urgently. Hugsxxx
Over here....if you have GCA you see a rheumatologist...you are referred to one immediately....and no one else will prescribe the steroids or deal with the taper...it is hands off. For the ophthalmologist to tell me to take 20 mg...is really unheard of. I've got to make a decision....and she just might prescribe some???
Probably...but I'm getting nowhere....I wish I had a huge stash and didn't need to ever see him again....xo Old Grammy's not so pleasant tonight is she? Grrr xo
Your eyesight and more is at risk if you don't get the right dose sorted. Demand a second opinion. Wave the guidelines for managing GCA at the rheumatologist and ask him to explain why on earth he is going against them
Disgraceful situation and enough is enough. Speak to your GP /Ophthalmologist for extra pred ASAP. You’re stoicism Is to be commended - any further deterioration straight to ER.
I do feel for you, I recently left my neighbour., before moving, in a similar situation. He won’t move out of his place for anyone. If your courage is a measure your remaining site will stay.
I am so sorry to hear of the changes in your vision. You are amazing and inspirational. Despite this big set back, you are so positive. You are right that it is not worth taking any more chances when it comes to your eyesight. Relax as much as you can at home and I hope your sight improves again with the increase in pred. Xx
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Bloody eye with GCA
