GCA called by different name?

[Spanky2019]

Yes,I'm back & feeling better. Still on 80 mg pred. Have another visual field test later this week. Most pain symptoms gone with exception of VERY occasional zinger in back of head & RARELY now both arms. Some difficulty walking & memory but think that's pred effect maybe?? Sorry but can't remember 🤔if any of you great people already explained the following. 1. If DR calls illness systemic medium and large vessel vasculitis & other times calls it gca, is he talking about one disease or two? 2. Will/can all pain eventually go away if on pred long enough & high enough dose? 3. I absolutely learned my lesson last week by too much activity. I can really do my own adl's & that's pretty much it. DR says probably take 2 months before I can do more. Does that sound familiar or right to you? I guess the other dx, i.e. osteoporosis & major gastro issues complicate things too. What say you?

[PMRpro Ambassador]

1. Basically he's talking about the same disease: This link

academic.oup.com/rheumatolo...

talks about the different aspects of vasculitis at this level and how they relate. The text is maybe a bit heavy, but the figures and tables are quite understandable I think. GCA can affect the head (cranial) or the trunk (extra-cranial).

2. On enough pred you should get to a tolerable level of pain - but while it should be a LOT better, it may not go 100%

Sorry - OH is pacing, has just decided it is time to go out (autistic spectrum ) Will say more later...

[Spanky2019 in reply to PMRpro]

Thanks for connections. Able to read/ retain info better each day. As always, appreciate you helping me get through this.

[PMRpro Ambassador in reply to Spanky2019]

It's like starting school - no-one learnt to read on Day 1!

[Rache]

Hi Spanky. Glad you’re getting the treatment you need and starting to feel better. I’m sure one of the experts will be along soon to answer your questions. All I can say is that Pred at a lower dose than yours gives me brain fog and I am very forgetful at times - cannot string a sentence together! Have stopped driving when this is happening. The dose you are on is necessary at present but I’m sure you’ll be able to taper it down eventually and retrieve your old self ⛅️

[Spanky2019 in reply to Rache]

Thank you. Yes, the high dose pred is is producing some negative effect, but so worth being out of the heavy pain. Have a great day.

[SnazzyD]

Hello, glad your symptoms are getting under control. I only got as high as 60mg and it sure does fog up the brain at the same time as making it fire up too much. Physically is could barely function and did everything in slow motion for some reason. That does improve as you reduce the dose but not a fast as we’d like. As to how long, well that depends on your body deciding to go into remission and stop attacking itself. TLC is imperative, don’t push it!

[Spanky2019 in reply to SnazzyD]

Yes, slow motion is right. Helps to know others experience that at high dose s well. Wish it was easier knowing what's from illness & what are medication side effects. Hope you have a great day.

[Hidden in reply to Spanky2019]

Glad you feeling a bit better GCA wise....pred head/brain fog....what was I saying..🤔

[PMRpro Ambassador in reply to Spanky2019]

That will come over time - listen to your body and make notes if it helps. Some people keep a diary and say it really helps being able to look back at how they were on a given dose or how changing a dose affected them.

[Spanky2019]

🤔Probably had the fog before but can blame it on this now. Helpful to get each dx sorted out & fix what we can. GCA - What a disease to do interesting psychological case studies! Not on me though. Didn't know I could get so whacky. But thanks for helping on the path through this.

[SheffieldJane]

So glad you are feeling better. All your questions have been answered I think. 🌷🌸