overlaps and confusion

hello

Today I have my appt . to go over biopsy report and talk over dosing.

I did not decreaes today due to being on the antiviral for a " shingle" like

rash, it is a typical as crosses the midline of my abdomen. stopped the spread so that's positive. I didnt decrease due to advice here, thank you.

I kniw if negative it can be a false result, having been on the pred, but It will still be good to hear that and see where we go from here.

What i find confusing is the overlap in side effects of med and symptoms of this disease

Is my face temple area sore, yes, but my incision line in tender, too

Cant pred cause blurry vision? Profuse in a puddle night sweats.. pred?, Pmr?

headaches, feeling of hypoglycemia gca ? pred? Then there is my drastic diet changes?( very low carb to none, no sugar salt) Is it possible to drink too much water? But after 5 days of 40 mg. before actual dx, then week of 60, 40 and next 30 so far no moon face , hunger ,and continued weight loss that was greatest advice ever . .

I think, the only clear pred side effects are fluctuating bad memory, brain fog, crazy energy highs and lows , so far anyway.

And who kniws what coukd be from high dose antiviral,only 2.5 days more on that

Maybe no question here, just early morning thoughts confusion.

Just that kind of morning

be well,gina

8 Replies

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  • Yes - it is possible to drink too much water, it can cause you too have too low levels of several things including sodium - at least some isotonic drinks are better above about 2 litres per day. In Germany (the land of beer) they actually sell alcohol-free beer as an isotonic drink for athletes...

    You're right - PMR can cause an awful lot of the pred side effects. I had 5 years to establish that! The question is - what was there pre-pred? Did you really notice a change on pred?

  • Hi,

    I'm four weeks in on 40mg Pred for ?GCA, which occurred over 48hours from essentially feeling normal. In the first two of weeks I staggered about wondering what was the Pred and what if any, was the GCA that was following its symptom path only just started.

    Think the Pred is: No muscle stamina, going from feeling a bit weak to feeling trembly and faint for no reason, trembly and faint due to sudden low blood sugar, out of puff occasionally. I feel vague yet sharp at the same time, such that I think I'm on the ball but find I have ordered 5 cucumbers and 1 tomato on my online grocery shop. My face has changed in three weeks but I've lost body fat and muscle density, but lack of my usual high level of exercise has just stopped. I have panda eyes and flushed face from 4pm and my skin is sensitive and dry. My active lifestyle working and being mum to a large household has overnight with Pred, become planning my day according to energy level which means no work, doing two chores a day and having a sleep in the afternoon. A 4km fast dog walk daily is now a 2km slow walk making really sure my blood sugar isn't low before I start or I'm in trouble. Not having PMR I don't have a relief of debilitating pain as a guide to benefit.

    Re water, I make sure my wee is pale and not strong yellow rather than sticking to a set amount that my body may or may not need according to conditions. However, I have noticed being on holiday this week and having a higher salt content it really makes a difference. I had bacon and sausages for breakfast instead of nuts and a banana and I didn't wee for hours and found I had fluid retention around my torso which sorted itself out overnight.

    I did however, feel so much better having the higher sugar diet overall in that i don't have an overall feeling of weakness going from one low sugar/carb snack to another. I know this is not sustainable. However, I had tea and cakes and felt terrible for a couple of hours followed by a whopping low. So, I guess needs to find the balance right for one's own body and I'm still at the drawing board.

    With GCA my eyes lost Long sight and I'm long sighted but made my near sight scarily good. I also couldn't adjust from short to Long quickly and moving my eyes in their sockets felt stiff and I couldn't catch up the focus when my gaze shifted. That all went in two hours on 60mg Pred.

    Antivirals can certainly make one feel decidedly off.

    Good luck with working out what's what and with your appointment

  • thank you for the response I recognize most of what you are experiencing, as far as the pred and my heart goes out to you having to having to take care of a family while experiencing this. I at least am past those years and have the ability to rest when i want .

    My pmr symptoms were mild compared to most but sudden onset. Vision never went dark, just a subtle blurriness with a headache, and that is why started on high doses. My sed rate was 50 but that was after the pred boost of 40 mg a day, But last week after sustained high doses it was 9

    my headache today resolved with tylenol, so guessing thats diet/ pred/ or anti-virals. I will say the type of joint/ muscle pain had pre pred is gone, it was specific to areas now its everywhere. Vision gets a bit blurry here and there but only 2 hrs into pred, and is fine by evening So I do believe the bulk of my ill feelings are med induced.

    I am looking closer at my water intake after I read prm pro response as well. I am drinking 140 oz an hr easily. Some are electrolyte enhanced, and on a diuretic,along with restricting sodium . I am doing this to stop the bloat and gain, but probably over doing and will cut that back.

    Down another lb today so there is a bright spot🌞

    Will see what appt today holds

    Thanks again

    g

  • I think it is fair enough to say that if the headache went with Tylenol it isn't GCA! Tylenol isn't an antiinflammatory - not something I use anyway as it does zilch for me!

  • Thanks. agree! So thats another bright spot!

    Pre pred, not even advil helped headache.

    Be well

    gina

  • Personally, I like cucumbers!

  • So do I, but it's nice to be able to have some warning, so I can get round to writing A 100 Ways With Cucumbers. Hopefully later this summer my greenhouse will do one better and give me 50 in the same week. My neighbours start to hide when they see me at their front door with arms full of them.

  • I was delighted when one of my neighbours handed over some of his excess - they were SOOOOOOOOOOOO much better than the Spar sells!

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