Sun sensitivity

[Flowerwh]

Hi all,

I started urso last fall after being diagnosed. I sat in the sun the other day but not that long. I got a sun burn which really surprised me. Is sun sensitivity a side effect of urso or the disease? Just wondering. I am definitely more sensitive to the sun.

[Candy12]

Not sure I can answer what the reason is: I know that when I first go out in the sun I get a strange rash on any exposed areas but it settles down after while. Seems like my system needs to adjust to the sun or maybe the heat.

I also tan very quickly, thankfully I never burn though, people have already started asking me where I’ve been on holiday, like I’ve been somewhere exotic. They seem very surprised when I say just out every day walking the dog, especially as in the UK we’ve not had that much sun yet.

[Hidden]

I have never heard of sun sensitivity as a side effect of ursodiol and it is not in the patient information leaflet as being a side effect, so it has never been reported as being such. Like Candy12 says, our skin colour has or does commonly show a response/reaction to our autoimmune condition. Bruises that i had a year ago still show as a mark on my leg tho they obviously no longer are bruises. It seems to me to follow from all this that we could have a different reaction to the sun than we had before we had elevated levels of some elements of our blood on liver function tests (LFT's!).

I have a uvb unit, that I use to the recommended exposure that never colours the skin. Its help build vitamin d in winter months. I feel a reaction under my skin and sometimes it triggers itching for a short while. It makes me very cautious.

[kimphoebe]

Hi there

I have noticed over the last couple of years that I seem to more sensitive to the sun, can't seem

To sit in it as long as I used to. I to tan really easy and always look as if I've been on holiday.

[chrissey7]

Hi I to have asked this question before because I tan more easily now than I did years ago there was apiece in the pbc compendium once which said this is a bonus side effect we look too healthy for having this condition ah well every cloud 😊😊

[MissusTee]

It's worth checking out that you haven't (probably don't) have another autoimmune condition as with lupus people have sensitivity to the Sun. Have you had an Ana blood test?

[Flowerwh in reply to MissusTee]

Thanks. I will mention this at my next appointment. I did have positive ANA.

[Hidden]

There's an antigen known as AntiRo present in between 70+ -90% of people with autoimmune conditions including PBC, Sjogren's, lupus, RA which makes them photo-sensitive. I didn't read enough to know if any research has been done to say if we can acquire AntiRo antigen at any time after diagnosis with PBC, or if we always had it but not previously sufficiently to cause photosensitivity. PBC people report that their tan doesn't fade. Does it just mean that we were damaged at a deeper level than people without AntiRo who's tan does fade? It's tough when you've been hanging in there all miserable winter, thinking it'll be alright in summer...?

[billhunter]

Itchy skin is a symptom of pbc. With lots of sun it gets worse for me and turns into itchy lumps often called hives. My gastroenterologist is clear that this is correct. I love the sun but at the first sign of trouble move to the shade. Am on a daily antihistamine which probably helps. Hope this is of some use. William

[LorraineLouise in reply to billhunter]

I noticed since being diagnosed three years ago and being on Urso. I am hypersensitive to the heat and sun 🌞.

[ninjagirlwebb]

I’ve always been sensitive to heat & sun way before pbc. I get heat rashes & need to have sunscreen on. So I try to avoid strong sun & wear sunscreen at all times. I supplement with 2,000 mg of Vitamin D daily.