GCA and Rip van Winkle!

Have been sleeping quite a lot lately in a strange and heavy way. Sometimes an hour in the morning and two hours in the afternoon. I am sleeping better at night - waking up only about three times. I am taking Mycophenalate but this began before the new drug. I get a headache, aching neck and sinus problems, then sleep and wake up feeling much better. I feel like I am sleeping my life away. My PET scan showed I have active GCA or the new rheumy now says it might be large cell vasculitis. My previous two rheumatologists said it was definitely GCA from my first PET scan. Does anyone else sleep in this odd way. I am on 10 mg of Pred but started at 60 mg and was on high dose Pred for over a year - reducing slowly and with difficulty. I am always worrying that I have something else going on. Any help would be appreciated. You are all so wonderful on this site.

11 Replies

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  • I'm left to ask how they can tell whether it is GCA or another large vessel vasculitis just from a PET scan. And GCA (giant cell arteritis) IS an LVV (large vessel vasculits.

    Have you told your new rheumy about the headache, sinus problem and the sleeping?

  • Yes I have but I dont seem to get any response

  • I do recognise that deep, deep sleep. I also have weird and wonderful dreams, sometimes tipping into nightmares but not that often. I find it restoring. I am on a taper towards 9 mgs. I look better for it too, clear eyed and younger which is nice what with the fat back and hamster cheeks.

    I was also puzzled by what your medics said I thought large cell vasculitis and GCA were indistinguishable.

  • On a PET scan they are. Only a biopsy shows the difference - and they rarely do one on the aorta for fairly obvious reasons ;-)

  • Well I must say I also thought they were the same thing. Good to hear Sheffield Jane has the deep sleep thing. I also have the fat face and hamster cheeks. Wonder if they will ever go.

  • I got rid of mine while still on 15mg pred. Cutting carbs drastically did the trick!

  • Not quite the same pattern, but Pred does make me sleep more. Have been reducing since December - generally, the more pred the more sleep. A relief to me! Not sure of current dose - have had a terrible bout of vomiting Fri-Sat. New diabetes med or something else? ? Not sure how much medication lost - took a bit more - fingers crossed. Feel ok now but blood sugar pretty high.

    Since GCA, I also have frequent headaches, aching neck and sinus problems (amongst other things). Sleeping doesn't always help those. When good, wake up feeling okay. When bad, wake up feeling worse than before. Like being on a helter-skelter - peaks and troughs.

    Hang on in there. With any luck, this too will pass.

  • Problem is that I have had over a year of this now. Feeling tearful and depressed today

  • You have all my sympathy. The thought of this going on for years is very daunting. Even now, I do get weepy at times. And am really fed up of being weak and wobbly, and knackered all the time.

    I'm down to 16mg Pred, thinking of trying 15mg. Had a flare last time I got down to 14.5mg. Side effects not good - the diabetes is steroid-induced and severe. Strict carb-free diet - no fun either. Couldn't tolerate the main diabetes med (abdominal pain) which is why I'm trying a new one. With much apprehension, am going to try it again tomorrow. Hope the weekend vomiting was food poisoning or something. Couldn't even sleep today - too tense.

    It's no fun, is it. But we have to remember that, sooner or later, there is every chance that it will get better.

    Lots of hugs and good luck.

    PS: realised I didn't mean a helter-skelter, but the one that goes up and down. Brain fog?

  • I sleep and sleep and sleep - during the day. Not so good at night and I am really worried (which makes my head ache) as I am attempting work for the first time in two months tomorrow. Wish me luck!

  • I am so lucky I am 64 and dont need to work now. Good luck, take it slowly

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