Tamoxifen caused a UV allergy

  Hi lovely people I had breast cancer two years ago which was dealt with. Since then I have tried letrozole, then Tamoxifen and lastly exemestane. I started Tamoxifen last June, in the hottest summer I've known for years.  Within a couple of weeks I had a horrendous red rash on my neck and chest area, and shoulders. I didn't know what it was and contacted the breast care clinic. They were unable to help me as they did not know what was happening. I had an appointment with the consultant in a few weeks and he did not know either.  Since then I have done lots of research on the Internet and have found American government papers that confirm Tamoxifen and the other medication I had taken can cause a UV allergy. I have since bought special clothing, Umbrella, wear factor 50 suncream and my husband has put special UV film on some of our windows at home. I am very frustrated that none of the medical community can help me I have seen a dermatologist privately but no one knows anything about this. I am having to work it all out by myself.

Apparently Tamoxifen also causes your body to heat up.  I was wondering whether anyone else had suffered from the same allergy. 

 

 

  • Hi WildRose7, not related to Tamoxifen, but I have a uva/uvb allergy that was apparently triggered by going on a contraceptive pill. The first I knew of it was on honeymoon in Tenerife not long after.

    In my case the rash starts as little red bumps which feel hard to the touch, and are itchy. If further exposed to the sun, these change to areas of broken skin, even when not scratched. A dermatologist referred to it as polymorphic light erruptions.

    This was back in the early eighties, advice/treatment may be different now. The dermatologist said make sure sun block is one for uva and uvb protection, as not all are. I'm the one on the beach wearing jeans and long sleeve shirts. I was offered a course of what essentially was sunbed sessions, I think with the intention of building resistance/tolerance, can't remember fully. However, I declined because of the risk of skin cancer and premature wrinkles. Plus the only machines available then were several hours drive away.

    Once you get into the swing of dealing with the allergy, it's not too bad. I found it harder as a young person because my friends could do things I couldn't, like throw on a bikini and run into the sea. These days I'm used to it, plus my skin is a bit less sensitive. 

    Bear in mind that you need sun to help the body produce vitamin D. For years doctors said I'd be fine and declined testing me for deficiency. About three years ago a new doc on the block did test me, and was shocked how deficient my system was. A course of booster tablets, then continued maintenance dose has made a big difference. These days medics seem more clued up on vitamin D.

    Hopefully other folk will come along with advice too. It's a drag when doctors give the bare minimum input.

    regards, gamechanger

  • Hi Wild Rose, I was, diagnosed with advanced metastic breast cancer a year ago and had the usual treatments of chemo etc, then in Feb of this year was put on Tamoxifen. All was fine apart from period pain and the usual 'power surges' /'tropical episodes'. Then in June I started to bleed heavily (I am four years post-menopausal at the age of 40). Coupled with this, I started to itch and burn severely on my arms especially and come out in painful blisters. It took me some time to work out that I was reacting to light. I suffer badly from hayfever and work outdoors so it was attributed to that at first. I spoke to my oncologist and he confirmed it was Tamoxifen related. It's a rare but known side effect. I've had to change lightbulbs in my home and keep my curtains closed. Halogen and flourescent lights are horrific for me. LED lights at 25W are less horrific as long as I'm using SPF 50 indoors. I've yet to find a sun cream that fully protects me given that I work outdoors for hours on end (and I also keep covered up) but Altruist, Ladival and Eucerin SPF 50 UVA/UVB 5* really minimise the effects for me. It's a relief to find people who understand the finer nuances of BC treatments and who can freely discuss them, as I feel personally that a lot of things, no matter how 'trivial' they may seem are actually a big deal to the sufferer and there's not enough info or support about it, which makes people feel alone and frustrated I reckon. Much love to all you fabulous ladies out there

  • Thank you so much for this! I had a reaction while on Femara (letrozole) an aromatase inhibitor.  There is little to no info on the internet about this and the "avoid sun exposure" is mentioned sometimes but it never says why (i just assume if you're a cancer patient it says that bc of risk of skin cancer.)