Last year from Sept to Dec I felt so ill, and on the 8th Dec I was told I had GCA, I had never heard of it , but unfortanetly I lost the sight in my left eye due to this hideous illness. I struggle every single day but I also have lots of other health issues, so having GCA is very difficult for me.
I keep going but it’s so hard, like all of you know out there.
One day at a time!
PS: I have combined the two posts Meg1933 put up so all the responses will come here with all the info together, PMRpro
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Meg1933
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Hello Meg
Welcome 🌷 Thank You for Posting, l am very sorry to hear what has happened to you, our very dear DorsetLady will reply to you shortly & she also has had a similar experience.
Anything we can advise you on we will be happy to help.
Welcome to the forum....and to the mono-sighted amongst us. Plenty of the former, not so many of the latter!
Would you like to give a bit more information, both about your diagnosis of GCA and your other issues so we can tailor replies to you specifically.
Early days it is a struggle, but as you learn to cope it does get better, and you will get a lot of support from this forum.
When you feel able you might like to read through some of my posts - just go to my profile and have a look through - but this post I wrote a couple of years ago might help initially -
As you very wisely say, one day at a time. You can rely on PMR and GCA to throw you something new every so often. You have been unlucky but now you have found this group there will be someone to help you get through each day. Welcome.
Welcome, it is a tough disease and the first year can be very challenging. Slowly, slowly you will start to feel better. It truly is one day at a time.
Hi Meg. You have come to the right place for support be it practical or emotional. This community is worth its weight in gold, so I am glad you have found it. I don't have GCA so can't profess to know what you are going through, but just wanted to let you know I am thinking of you.
Thank you everyone for your kind words and inspiration. Yes I am struggling with this hideous illness but I also gave other health issues, which make me very vulnerable. 4 years ago I had right hip replacement but the surgeon involved, gas left me with damage to my sciatic nerve and a drop foot, so I need a stick to walk. Some of my days are very black but I am a strong wee woman and my pride keeps me going. Since my op I gave been in chronic pain 24/7 and now my blind eye is so painful, caused by nerve pain.
Feeling for you. Like you I was diagnosed with GCA six and a half years ago. I too had never heard of it. My son downloaded info so I could read all about it. I was nine days in hospital before it was finally diagnosed and they came and gave me predisolone late one Saturday evening. What a change it quickly made to how I was feeling. Be patient with yourself and you will get better. ; 0 ; 0
I was diagnosed w GCA in Nov 2016. I had also felt quite dodgy for quite a while beforehand, (thought I was just getting old!) but was lucky enough to be diagnosed before my eyesight was affected. I do feel for you - rotten luck.
By now I'm down to 4mg pred. Still not leaping about, but much better than at first. I would say that the first year is the hardest. You will gradually come to terms with it and, if you ask on this forum, you will find help with all the issues and uncertainties that arise. I found it enormously helpful. Someone almost always comes up with something helpful. And it's comforting even just to know that you're not alone.
During the last year and a half I have very gradually been improving. Snails pace - two steps forward one step back - but don't get discouraged. Sooner or later you will realise that you don't feel quite as bad as before. Don't try to rush, but try to build on it - little by little.
Sending lots of hugs, and wishing you all the good fortune in the world.
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