Is anyone else struggling with the sun? Every time I try to go outside - even if its only a few minutes I feel terrible.
Normally I love this weather and spend all day in the garden but after 5 mins out now I feel sick and exhausted. Had to visit someone at the hospital today and when I got home had to go for a sleep. So frustrating!
Hi Angel _b
Yes I do. Used to love this hot sunny weather, now it just drains me. I'm on betablockers and blood pressure tablets, and my cardiac nurse said they would be causing it, but maybe pbc has something to do with it too. I can't stand any kind of heat now and I'm always too hot when the rest of the family are cold. I have noticed though that even a cool breeze can be like a miracle cure.
Hi emerich.
That’s funny. I’m on beta blockers too. Although I’ve been on them for a few years but I’ve recently increased the dose. I take them to prevent migraines.
I’m the same with a breeze. At work we have walk in fridges and I go in there to cool down sometimes.
Seems like it could be the beta blockers after all maybe. I used to take them in the morning and always had to have a sleep around lunchtime as I was completely exhausted. Eventually wondered if it was the tablets I'm on after a heart attack and discussed taking them at night with the nurse, she agreed and it has made an amazing difference. I take the beta blocker 1 hour before I go to bed and fall asleep easily. It used to take me hours to drop off. I feel so much better during the day now. Might be something to consider, obviously you would need to discuss it with your gp before trying it though. Doesn't help much with the heat though.
Thanks emerich.
I take one in the morning and one at night. I usually only take one in the morning but had it increased to night as well. Might be worth while when I go back down to one to change to night time.
Hope your keeping well now.
It's worth discussing with your gp, might help. Maybe it's different with migraine treatment though. I'm lucky my numbers are good for pbc. The specialist blamed statins for the awful lfts I had for a while, now I've stopped them everything seems to have settled for now.
Another thing I find that helps me with the heat at home are the cooling sprays you can buy, quite effective.
Good luck.
Yes , I'm finding this week a struggle too . Not sure if it's pbc or it's just to hot, it seems a little cooler today . I like it around 18 to 20 degrees perfect for getting things done . We just don't have the chance to get use to it in the uk .
Are you taking azathrioprine by any chance I have auto hep n take these awful Immunosuppressents and feel so sick dizzy in the sun
No I don’t take them. I’ve heard they are quite harsh though. Are you on them permanently or does it fluctuate? Dizziness is awful I get vertigo as well now but have so medication that helps when it’s bad.
On both continuously blood tests every 6 weeks
Every time I taper down from these awful steriods I flare. So on for rest of my life maintenance dose also on for rest of my life azathrioprine too
I also have not been able to take the heat at all for a number of years. I used to love it on the beach ( I live nearby) and now I actually feel ill if I'm in the sun for any length of time. I go when I have visitors but I sit under the umbrella like an old lady (which I guess I am now!) I also am on beta blockers. When people ask about extreme fatigue and PBC - yes, I have zero energy - but I don't know if it's the disease, or one of a number of medications that I take. Almost every one lists fatigue as a possible side effect. And then I feel like I'm whining.
Many , myself included, have little tolerance to much direct sun. I try to be in the shade and wear a hat whenever I'm out in the sun. It does make me just feel 'sick'.
Travel insurance (I'm in UK) 
Anyone have symptoms like mine?
Bit confused about a blood test
Ocaliva is working for me 🙌🏻🙌🏻
20 Days post transplant
