Flu feeling

[Marie1479]

Day 10 on 15mg. Almost all muscle pain gone except left shoulder. 10 days ago could barely walk. The flu feeling won't go away and is horrible. Glassy eyes, nausea, no appetite and headache. By the evening it gets s bit better. Anyone having this problem ?

[jwb43]

I am not on prednisones right now but when I was I was on a much lower dose and I still had similar side effects to what you're having but not quite so severe. My last about three weeks so I don't know what can be done .

[SheffieldJane]

Hi Marie1479,

I am on 10 mgs now and I would say my symptoms are similar to yours with pain and stiffness hardly present at all. I just feel generally I'll and wiped out and quite irritable . I am hoping that the depression I had in the beginning is not returning. I am really not sure what my body is telling me with regard to my dosage. I have been told that Fibromyalgia is also present and this muddies the picture. In some ways the pain was specific and better for me, it kind of lifted the guilt around doing less. Really stuck.

However we must press on, Christmas must happen, but I do feel like running away and sleeping through the whole thing.

You have my every sympathy!

You may have a bug, I keep telling myself that.

[PMRpro Ambassador in reply to SheffieldJane]

"Christmas must happen, but I do feel like running away and sleeping through the whole thing"

Why must it happen? Or at least, happen in the form of the great stressful "thing" it has become in the UK?

I have run away - one of the lovely things here is that there isn't the pressure for such a major upheaval just because it is Christmas. We have Christmas markets which are heaving with tourists every weekend but the traditional Christmas meal here is more often than not soup with sausage because they have to go to church afterwards or if more upmarket it will be fish. On the 25th most people go out to walk, ski, do something energetic and often eat out in the evening - we go for a pizza - or have a family meal but not a fixed calorie mountain like turkey and the trimmings that takes so much effort to plan you are exhausted.

We never were able to have a big family Christmas in the UK - you can't when everyone is working in the NHS and live several hours apart in different directions. So it has always been low-key. When the girls were small we lived in Germany - same as here, the emphasis was always on reflection through Advent, and we continued the same when we came back to Britain.

Steak and chips/salad on Christmas Eve, pizza on Christmas Day, out for a meal on the 26th when the hotel in the village re-opens for guests after celebrating their Christmas...

[SheffieldJane in reply to PMRpro]

Sounds perfect PMRpro. It's the being sociable that I find so difficult these days. I feel pretty boring, nobody wants to hear about your aches and pains and apart from darling Theo they do tend to dominate my inner life. I wish my lot would troop off to church, I'd love the peace of it. It might help if I still drank but I gave that up for the duration. ( of PMR).Now I've said all this I bet it will be nice, I'm fortunate to be wanted somewhere, where I'll be fed and I am loved.

Happy Christmas all my fellow sufferers!

[PMRpro Ambassador in reply to SheffieldJane]

Being sociable becomes harder as you get older anyway and then you add feeling not entirely on top of things because of the PMR. A lot of people in the past have commented how they find noise and the disruption to a daily routine that they have developed to manage their chronic illness is tiring and even upsetting and leaves them sort of jet-lagged.

All it needs is to be late to bed because everyone is "doing" or watching something on TV and you find it hard to leave because you are afraid you will be the "party pooper" to be tired next day. Over Christmas, and often holidays in general, there is a whole load of food around that you wouldn't normally eat and is hard to resist. That overloads even the healthiest body - particularly when you consider how much sugar there is floating around!

So this wonderful family time becomes a stress - and we know already that PMR and stress make poor bedfellows!!!!!

[SheffieldJane in reply to PMRpro]

Exactly! Thanks for that! Hope you have a lovely one!

[PMRpro Ambassador]

The flu feeling is due to the underlying autoimmune disorder that is the cause of the symptoms we call PMR - and the pred has no effect on that at all I'm afraid. It has to be managed by rest and pacing. It will improve eventually - but don't hold your breath waiting! It may be a while.

[Marie1479 in reply to PMRpro]

Thanx everyone. Yesterday I felt so good and because I did I overdid it. I paid for it today. Low grade fever and heavy duty flu feeling. I had to leave school early and succomb to rest. By the afternoon it passed thank god.

[piglette]

When I first took pred it worked like a miracle. I think I got the headache from the pred as I never had headaches before and the flu symptoms from the PMR. I just give into it and take it easy.

[lindyloy in reply to piglette]

I have been on 17.5mgs.for a month, my third attempt, I thought I was doing great, but for about a week I have had an ache in my right leg, just like toothache, it goes away in the afternoon, the fatigue has got a lot better, but I am considering going back up to 20mgs. as I don't know if it is withdrawal or what. I don't want to fail again and think I may be overdoing it as I go about my normal routine just a bit slower.

[piglette in reply to lindyloy]

Dropping from 20mg to 17.5mg may be a bit too much. They say do not increase more than ten per cent at any one time. Could you try one mg at a time perhaps? The fact you have pain in just one leg does not really sound like PMR which tends to be bilateral. I may be wrong of course.

[PMRpro Ambassador in reply to lindyloy]

In the early stages or if the pinching of the nerve is only slight, sciatica can feel like an ache and would account for it being only on one side.

PS - I suspect piglette made a typo - think she meant DErease not increase...

[lindyloy in reply to PMRpro]

Maybe I should have said that I have numbness in both feet, they can't find the cause, just that it is not related to the GCA. My left foot went numb in March last year, the right just recently and ever since the ache has come and gone, but sinse I went down to 17.5mgs. it just seems worse.

[christine2715]

Firstly the numbness might be magnesium deficiency - was the case with me - due to the steroids. I just bought pills at the pharmacy. I have felt ill and fluey much of the time for 7 months - think GCA is the most awful illness. But I am now finding reducing by only 1mg per 10 days or fortnight does mean more good days. I am down to 17 mg from 60 in April.

[lindyloy in reply to christine2715]

I asked at my local Pharmacy, but I was told I must see the Dr. as I am taking a calcium supplement, the magnesium must be balanced with that. I wish I had reduced like you, I think I was reduced too fast.

[HeronNS in reply to lindyloy]

The issue often is - extra calcium causes an imbalance with magnesium. If this happens you need to take magnesium separately from the calcium or it may not be absorbed. Another way to get magnesium is through an epsom salts bath or even foot bath. You shouldn't need to check with a doctor about that, but perhaps I shouldn't be advising you to do your own thing!

Another important nutrient which will help with bone health is Vitamin K2, but don't be surprised if your doctor knows little or nothing about it. It helps avoid some of the issues extra calcium can cause.

[PMRpro Ambassador in reply to lindyloy]

I have never asked my doctor - and I take calcium as most of us do.

"Must be balanced with the calcium" - actually, given the opportunity to absorb it the body does a darn good job of that! Are we then supposed to ask the doctor if we can eat bananas, avocados and dark leafy greens which are rich in magnesium? Too much magnesium will give you the runs as the body gets rid of it. But the Epsom salt foot baths will be fine...