I was on the third week of lowering pred dose from 5mg to 4.5 using the five week go slow method. I was feeling good. The day after the Shingles injection I began to feel ill with severe stomach pains digestive upset, headache, lightheaded, Insomnia but extreme tiredness.
Could it be simply the fact of asking my body to deal with the vaccine at the same time as reducing steroids cause this reaction?
Sounds very much like adrenals struggling - maybe exacerbated by coping with the vaccine …
healthunlocked.com/pmrgcauk...
..just tread water on the tapering by repeating your current stage..a couple of times if necessary.
Thank you for your reply. I should have had more sense than try to reduce at all as I’d lost 3kilos over the last two months and experiencing diarrhoea but I thought I’d at least try again, slowly. But I think you’re right the Shinglex tipped me over the edge. I think I’ll stay on 5mg for a while, maybe forever!
Certainly stay there for a good while….if it is adrenals it will give them a chance to catch up. See how you go, you can always try a reduction in the future…but no need to think you HAVE to.
On the subject of weight loss… was it intentional? It could well be adrenals, but just make sure it’s nothing else….
No the weight loss wasn’t intentional, that’s what was worrying me a little. The weight has stabilised now. But dropped three kilos in about a month.
Well do keep your eye on that… fair enough if it stabilises, it could just be reduction in Pred. But do monitor it in new year - and if it continues then seek medical advice.
I will. Thank you for just being there.
As DL queries - the weight-loss PLUS diarrhoea maybe requires further consideration? Maybe a chat to your GP?
Disappointed for you having to pause Pred - getting down below 5 one can cautiously feel ‘“I’m getting there!” Then… PMR has its own idea about that! I’ve similarly had to take a rest at a slightly increased dose for a few months - and beginning again to test that 5mg mark. Good wishes.
Good luck with reducing this time. I can’t seem to manage to get below 5 mg without a struggle.
Know you only joined the forum in February this year, but not sure when your PMR started or how you have reduced…that’s why it’s always useful to put a bit of info on your bio.
But would say if you keep stuttering at the same dose when reducing, then a maybe that is your dose for the moment…won’t always be, but is for now… and that’s a good enough reason to stay there for a few months…
.. and whether you are using an ‘overnight’ tapering regime or one of the slower gentler ones, if you go below the dose your PMR needs, you go below it…with same result - a flare….end of!😊
I’ve been.on pred for four years. Started at 15mg and gradually reduced to five. Hiccup at 7-8 but managed to get past that hurdle. I think you’re right. Five is my dose. I doubt very much I’ll get lower as I need more gluteal tendon repair surgery next year when my previous glute surgery has completely healed. Plus I have arthritis in my foot. I so remember those joyful few months on 15 mgs and absolutely NO pain anywhere. Bliss. 🤗
Which shingles vaccine was it? Shingrix (this is a two-step vaccination so there will be another shot planned in the next 2-6 months) or Zostavax (which is just a single shot).
Yes it’s the Shingrix one. So undecided about getting the second. Maybe I could increase the pred for a few days if I go ahead with it. I never have any problem with vaccines usually but with this one my arm was really sore too.
You need both of the Shringrix ones or you don’t have maximum protection— but it can be anytime between 2 to 6 months for second one.
If your arm is sore would say it’s vaccine or badly administered vaccine… 😳
I'd definitely "risk" it - because honestly, if you think the jab has been bad, I promise that if you develop shingles that is likely to be even worse!
You do need the second shot, but check into whether it's a concern you're reacting so strongly to something in the vaccine. I certainly reacted very strongly, but it was fatigue. I knew that it can upset the digestion so was prepared by eating well early in the day, had vax early afternoon and very little to eat after that. About suppertime, which I don't think I ate, I quite suddenly felt like all the air had gone out of me, managed to do a few essential evening things, like making sure the cat had food and water and litter scooped, and then I collapsed into a comfy chair - and stayed there until morning! The extreme fatigue lifted nearly as quickly, over about half an hour, about 24 hours after it had struck. My second shot, which was about six months later, did affect me but not nearly as strongly There is a unique adjuvant in Shingrix which of course makes it work better, but can also cause stronger reaction. Can't remember whether my arm was sore, but it probably was.
edit; Haha, just found my post written shortly after my first shot, and apparently I did eat supper, which I regretted, but wasn't sick. Remembered the other details better, because it really was the extreme fatigue which was most notable.
Thank you so much for your reply and suggestions. I’ll certainly make sure I follow them. I did hardly anything yesterday but have done my usual 3k walk this morning. It knocked the stuffing out of me though. I was breathless and exhausted. Something is certainly going on with me. I’ve gone back to 5mg and will stay there. Hopefully all these weird symptoms will go away.
When I thought about it some more, remembered more; what happened was a very curious sensation that my digestive systen had simply stopped working! Probably settling into a comfortable position and basically not moving for hours was not a bad thing although I don't think I was actually able to do anything else at that time!
I never have had a reaction to any vaccine except the one for shingles. Had upset stomach, nausea, and fatigue with first shingles shot, but almost no reaction to second shot. Maybe you will have similiar experience with second shot.
That’s so good to hear. Fingers crossed for number two
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