sun sensitivity

[Jynx93]

hello everyone,

I was just wondering if anyone else has had a problem with sun sensitivity whilst taking Peg, dose of 45mcg weekly. I’m ET jak-2.

Any ideas of anything that can help the symptoms as I’m going on holiday soon and not too keen on spending 2 weeks sitting in the shade and avoiding the sun. I’ve only been having this reaction since this really hot weather on the parts of me that see the sun. Mainly forearms. Any tips would be helpful thanks.

[hunter5582]

I have not experienced that issue due to the IFNs but do get eczema on the back of my neck with too much sun. I always use sunscreen and have hats with neck flaps I wear when out in the sun. There are very lightweight long sleeve shirts with UV protection. Many different styles available. Given how hot it is, I also use a cooling towel around the neck. coolibar.com/featured-colle...

smile.amazon.com/s?k=uv+shi...

smile.amazon.com/s?k=coolin...

WIth just a bit of caution, I expect you can enjoy the outdoors while on holiday.

[Jynx93 in reply to hunter5582]

Thank you for your reply

[EPguy]

I've had a different type of light sensitivity. All interior lights appeared super bright the evening of my 2nd Besremi dose. It has not recurred and I've not had the skin issue. I've had some other recent eye issues since taking Bes, so far it's not too bad but a concern.

[CLONDARA]

Hi Jyn, I have used Piz Buin factor 50 and P20 also factor 50, the latter is brill as the effects last 10 hours, on my fore arms and legs and went hiking in the Julian Alps with no sunburn. I also use factor 50 on my face, wear shades and a long peaked baseball hat. I am on Hydrea 5vtimes a week and am a fair skinned celt. X

[Jynx93 in reply to CLONDARA]

Thanks for the advice, I’ll try that

[NCB1983]

Hi Jynx93,I was planning to write a similar post on here!

I take 135mcg of peg and have noticed that I now burn really easily, especially on my tummy (where I inject).

I have always been a sun worshipper and have olive skin that has seldom ever burnt. Regardless, I have always worn sunscreen when in the sun, slapping it on routinely as part of my morning routine. This year however the factor 30 that I have always used has not been enough protection and I now use factor 50 (and my tummy still goes pink).

I mentioned it to my Haemotologist when we last spoke and he hadn’t heard of this as a side effect.

I would say that on holiday, use a sun lotion that you trust (I don’t trust Malibu but I do like the sainsburys own, piz buin, Hawaiian tropic, body shop), get yourself a beautiful sun hat and some funky shades! Then enjoy!!

[Jynx93 in reply to NCB1983]

Thank you for the advice, really annoying when you used to be able to sit in the sun but all things considered I suppose it’s a small price to pay

[jon1972]

I was photosensitive while on Peg. Now I'm on Besremi and have been at the pool several times a week this summer with no issues.

[EPguy in reply to jon1972]

That's a really specific difference, most interesting. It seems also that many get a red area near the injection site of PEG, but I've not experienced, nor seen here, that problem with Bes. Maybe some do?

[jon1972 in reply to EPguy]

That is the extreme side of the sensitivity. I would just put a towel or other cover over the injection area. But yea, if you don't cover it and get in the sun it will turn bright red. I was much more sensitive to the sun on Peg though overall though.

[Jynx93 in reply to jon1972]

The sun hasn’t seen my injection sites yet, it’s gone red since I first started but doesn’t bother me, fingers crossed it doesn’t get a lot worse. I’ll find out soon

[Wyebird]

Hi I had increased sun sensitivity even when on hu. Luckily enough even in the 40* heat I loved laying under a tree and feeling the dappled sun on my body. How about factor 50 sun cream?

[Jynx93 in reply to Wyebird]

I’ve just bought a supply of it, hopefully that will help, thanks

[Nc3500]

Good morning just reading your post about sun sensitivity I was just recently diagnosed with ET with a jak 2 mutation recently turned 45 years old I Have always been an outdoor person but recently I went outside and bruised in the sun and heavy itching told my doctor about it and he did not have an answer so I will be seeing another specialist symptoms are very bad but I am not on medication yet only on aspirin

[Jynx93]

It’s horrible when you suddenly get sun sensitive. I’m in Greece at the moment, it’s 38c and I’ve been using factor 50 (a lot of it) and it seems to have done the trick. I’ve been sitting out in the sun and no sensitivity. I’m on aspirin and peg interferon. Hope you get a definitive answer to the reason for your sensitivity.