Since when did 3am become morning?

I think I overdid it, but am managing to keep my senseof humour! Sorry about the length of this post.

I was diagnosed with Pmr in Jan15 and started on 15mg pred which was like a magic bullet, after 3 or 4 days I was 95% pain free. However, within another week sharted with pounding temple headaches and jaw pain on eating that made most food a chore, and eye pain, but not much scalp tenderness apart from the temple area. Managed to get a gp appointment on the Friday evening, she checked my hospital letter and rang the oncall reg at the hospital who got me in for blood tests that evening and upped my pred to 60mg arranged an opthalmology appt for the Saturday morning (which was ok) and I got a phone call on the monday to go for a biopsy on the Wednesday. Im sure you will agree, an amazing response by the NHS, to what I understand now to be a medical emergency.

However, me, trying to carry on as normal, checked with everyone I spoke to about being ok to fly as i had a weeks holiday booked for spain, flying out 4 days post op, not a problem they said. I think maybe differently now.

I had some effects of the higher dose pred at about day 3 which i sort of expected but felt very ill with, low bp but fast pulse which passed. Packed for the holiday and slung my bag over my now pain free shoulder and went to the airport. Noticed a slight swelling in my neck, which got bigger and bigger through the flight and on arrival at Malaga I was not sure whether to tell the taxi driver to head for the hotel or hospital! Plumped for the hotel and put a cold compress on my neck and although painful, it went down again over the next couple of days.

I had planned loads of things to do/ see but did none of them due to turning into a clutz, I fell over twice in the hotel room, walked into an open window frame and cut my head open, wrenched my once pain free shoulder in bed (somehow!) got the shakes so bad that I had to hold my mug/glass with both hands to get a drink, plus buzzing around like a duracel bunny, waking up after 2 hours sleep (at 3am) craving carbs and generally feeling not me.

Im home now with no further mishaps, but still buzzing and hoping my next appointment on 18th Feb can start to see a reduction in the pred so i can get some sleep

3 Replies

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  • Have they said the words GCA welcome to the club there are only approximately10,000 of us in UK First slow down . All the things that happened to you are from the pred as you will find from others on this site.Call the help line talk to them . Yes3am is the new morning

  • What a shame your holiday got spoilt! Have they contacted you with the results of the biopsy? Though the results of the pred sound fairly confirmatory of GCA on their own. Had they not warned you to watch out for those symptoms after the PMR diagnosis - if they ever happen again go straight to A&E!

    I think you should tell your story to the people who said it would be fine - I'm really not sure I'd have travelled at that stage of query GCA. Claim on the insurance and replan the trip when you know how you are reacting to the pred. Some people are reasonably OK, others not but obviously your medical team could do with some feedback for the next patient!

    The bad news is that if they do decide it is definitely GCA (and it doesn't need to have a positive biopsy by the way) then I'm afraid you will be on a pretty high dose of pred for the next few months. And watch those carb cravings - that way lies the dreaded weight gain!

  • Thanks for the replies. At hospital on 18th for results. Yesterdays flight home took it out of me and apart from loading up the washing machine, and letting the dog out, have rested, trying to get the swollen anKles down.

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