Goldilocks

Hello

I was diagnosed with pmr 18 months ago and was managing symptoms well. Even came off steroids a week before Christmas as GP said it would be possible was down to 1 mg. Was well for 3-4 weeks. Fantastic.

However 3 weeks, ago like Arnie, it was back. Phoned GP who suggested 5mg pred a day. I am actually on 6 and mostly feel ok, but....

I can't seem to control my temperature. I swing from boiling hot and sweaty to freezing (hat, scarf,duvet and blanket and still cold in a centrally heated house). Have a constant dull sickly headache and find sleep very hard to come by. Never seen a consultant but moved to a new area last September and thus a new gp. BP is knocking about at 140/90 so now borderline hypertensive. Think it's the pred doing that. Last thyroid bloods were ok. However feel lousy. Taking Aloe Vera daily in the morning - yuk, but ok with orange juice. Seems to help a bit I think, but the effect doesn't last all day. Any ideas? Thanks.

7 Replies

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  • Probably the flare of the autoimmune disorder - you haven't cleared out the existing inflammation yet maybe. Have you had your temperature and bloods checked? Are ESR/CRP reliable for you or didn't the GP bother to check them over the 18 months? I REALLY wouldn't worry about a BP of 140/90. And is there any chance you have a viral infection? That could have triggered the increase in symptoms too. Though you aren't the first to find that 1mg was keeping things under wraps and none simply wasn't going to work.

    I had the most awful time with the body thermostat and was permanently hot - until about 2 winters ago where suddenly I was cold! I had to go back to sweaters and socks in the house!

  • Thanks pmr pro. Previous gp amazing and although she checked by bloods she always treated my symptoms as more important. Yes, had my bloods checked last week awaiting result. Had to wait 2 weeks for the phlebotomy so was already on 6 mg pred for that time so not sure of what that may do to markers. BP usually around 110/60 - no hot baths for me- so it seems high now. Am doing home readings for a week to monitor. Will dig out thermometer, never occurred to me I might have something else too! Doh !

    Thanks.

  • The 6mg may well be enough to suppress the markers - it is in many people.

  • My thermostat has gone too either dripping with sweat or bone cold irrespective of external temperatures. Sleep was difficult for the first few months, now I seem to have sleeping sickness. Only difference is 10 mgs of Amitriptyline an hour before bedtime. I don't think it's that it's just the PMR merry go round. I mostly have a kind of thick head and feel generally blerg, worse since a recent bout of swab diagnosed flu. Struggling to get below 10 mgs of Prednisalone. No pain just all that above. I also have Graves Disease and wonder how the two autoimmune diseases interact. I don't think I would recognise "well" if it came and shook my hand.

  • Sorry, I have absolutely nothing constructive to add to this discussion - just wanted to tell Sheffield Jane that I think "generally blerg" is a wonderful phrase. Sums it all up, doesn't it?

    Happy days to all - no doubt they will be here again!

  • Generally blerg - love it!

  • Yes I liked "generally blerg" too and had to smile at " don't think I'd recognise well if it came and shook my hand" !!! I'm sure many more would concur with that unfortunately.

    Jackie x

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