GCA ongoing battle

[Spanky2019]

First battle it appears for so many of us is to accept that GCA is a game changer, and for me at least, is not going to be survived by strategies of the past. Had 3rd visual field test & was well enough to be shown/understand results. Yesterdays result actually improved from others but DR says, "not out of the woods yet." I do have sight in both eyes but not normal sight. All DRs involved agree 80 mg prednisone needs to be continued and that risks of other complications are worse than side effects. They said go to ER if any increase in any symptoms. Actually don't really feel too bad as long as I don't do anything & keep mind from being overly introspective. Rest & relaxation is my new friend. Screen time is limited as it too is difficult. But this forum has/is part of my treatment plan. I do read & feel for all who post here & send love & support to all.

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Hi Spanky

Follow the treatment plan & listen to your doctors & Rest, Rest, Rest as much as you can. Pred at that dose can make you restless ( or hyper in my case, though not for GCA - I’m a PMR’er)

We’re all routing for you 🌷🌷🌷

Kind Regards

MrsN 🌷

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Hopefully staying at a big dose for a while should clear out the inflammation. Rest and relaxation a good thing...some fresh air (out of the sun) with good sunglasses will help too. Hope you are on the upwards trend from now on. 🌻🤞

[DorsetLady PMRGCAuk volunteer]

Glad to hear there’s some improvement in your visual field sight, and continuing on 80mg may help it improve a little more.

As you say screen time is limited, as is reading I imagine. I was/am a great reader, but find now that audio books are my favoured way. I do sometimes download digital books - at least you can adjust the type size to suit.

Not sure if you can get them free through your libraries in the States as we can in UK. Might be worth checking, here we have to register with local library and then you can get access to either Borrow Box which is run by international company - bolinga.com for audio books or CloudLibrary (Bibliotheca - again international) for digital books. Both can be found on Apps Store - free.

Take care.

[Spanky2019]

Thank you Dorsetlady. Didn't think of this as option. Will try to get this today.

[PMRpro Ambassador]

You have a serious systemic illness - and are on a high dose of a heavy duty medication. You need plenty of rest and TLC. And it will get better.

[SnazzyD]

Sounds like the path is clear for now and hopefully you can settle into it. Glad you’ve found that ‘new friend’, stick to them like glue!

[SheffieldJane]

I really think that your are dealing with this so wisely Spanky2019. I know exactly the introspective place that you mean. I find Radio 4 a great help to keep my mind looking outward. Keep us posted, you are very much on my mind. I want you out of those woods!! 🌈

[Blearyeyed]

I know it's hard , from a GCA perspective , the added burden of vision tests and the larger doses can add more to feeling a bit overwhelmed and more Fatigue and drowsiness at first.

But the fact that you are feeling better because of pain , and that in itself is helping to clear your mind and be able to concentrate enough to cope with Doctors appointments is a huge step so well done.

It is alot to accept , especially the need to take alot more rest in the beginning when getting the inflammation under control.

But you seem to be progressing to the type of acceptance you need , and while you are stuck in rest and recover mode you can always plan ahead by making notes of how you can adapt things in the future to help you pace yourself , look after your health and have quality of life .

Don't forget to relax , do what makes you feel good rather than what you think you should.

It's your turn to be looked after by the World at the moment not the other way around.

So , getting some plans in place to spread the chores around and get practical help with things that need doing that you aren't physically up to is another great way to help you cope too.

Take care and remember you have done really well to be thinking as you are in such a short time.

[Spanky2019]

Thank you. Yes, I'm trying & your words help.

[aladymo]

Hi. I Too started out like you and my advice that I can give is make sure you take time to rest. Make it a part of your day like a meal. Go lie down morning and afternoon (if you need) it makes a world of difference. I didn’t do this in the beginning and I recommend it so highly. ( 1/2 hour does it for me with a warm heated blanket, and a welcoming pillow. May you have very few bumps along this journey. Take care of yourself

[Spanky2019 in reply to aladymo]

Truth is, I only have strength to get up every couple hours now. DR said couple months of rest the weakness will get better. Doing all I can do right now. Thank you for your thoughts. Have a beautiful day.