I wanted to find out if anyone else has experienced skin related issues such as rashes, urticaria (hives), sensitivity to heat, itchy skin etc… after starting Tamoxifen and if so how did you figure out if the cause was actually Tamoxifen or something else? And also what helped you with your symptoms?
The reason I ask is because it’s been 3 months since I started Tamoxifen. My skin related symptoms started 2 months after the fact, so I didn’t (still don’t know for sure though I’ve never experienced anything like this before) link them to the drug. My initial skin inflammation was just a couple of bumps, as it was summer the pharmacist said they looked liked insect bites and suggested using an anti itch cream and an antihistamine. They seemed to be getting better a few days on but then a week later I noticed them re-emerging and new bumps appearing, so went to the GP who prescribed a steroid cream and asked me to double the dose of antihistamine I was taking. A few days on I could see my symptoms clearing. But two weeks after that I suddenly get widespread hives (which I hadn’t heard of or experienced before until my GP said that’s what it looked like and prescribed a stronger antihistamine). It’s the most uncomfortable feeling, while the visible inflammation has cleared after starting the new antihistamine my skin still feels itchy all over, and it’s also super sensitive to heat (I mean even mild heat/warm temperatures feel like they are burning). Having read the side effects listed in the Tamoxifen box I am now wondering if that’s the cause and also if I should take a break from it to isolate root cause. Applying anything on my skin or even just touching my skin increases the itchiness sensation so I’m searching for anything that would provide relief. I am effectively covered up, wearing thin cotton clothes, having cold showers, and not getting much sleep at night due to the discomfort. I think I need to speak to my oncologist next, but wanted to see if anyone else has experienced any similar symptoms and what they did to help. I was previously on an AI (letrozole) and switched to Tamoxifen as I couldn’t tolerate it’s side effects and not entirely sure where I go from here.
Hi TDG. I’m really sorry you’re experiencing these side effects which you think may be related to Tamoxifen. I think it’s helpful to others to read this, so will you post updates if you find the cause. My Tamoxifen is still unopened.
Sounds miserable , I have neuropathy which causes similar symptoms ,the burning is really uncomfortable isn’t it ? Definitely worth running it past your oncologist , I don’t think it’s a common side effect of Tamoxifen but some of us are far more sensitive to medications than others unfortunately and taking a break to work out if tamoxifen is the cause may be suggested .Presume your GP has ruled out shingles ?
Yes, it’s such a weird & uncomfortable sensation (there’s no rash visible to anyone just looking at me now). I’m due to have a telephone checkin with my oncologist in 3 weeks time, but have left a message to see if I can bring it forward.
When I saw my GP last they said the inflammation rash looked like urticaria after which I was prescribed a stronger antihistamine (never mentioned shingles). I never even thought of linking Tamoxifen to my symptoms initially as they only emerged 2 months after I started taking it & neither did my GP who said if I’d been allergic to it, then the symptoms would have appeared earlier than this. But given that some of the skin symptoms still remain (thankfully inflammation has subsided, but I’ve stayed away from the heat all weekend) I’ve read through the tamoxifen leaflet which does list “skin reactions” and also “urticaria/hives” as a common side effect (there are so many others in the list). But then looking at the side effects associated to the antihistamine I was prescribed that also lists urticaria as a possible side effect so navigating side effects of these drugs can be really difficult.
I’ve decided to temporarily stop the tamoxifen, while I await my oncology checkin to see if my symptoms improve in the meantime (while continuing to take the antihistamine). I’m thinking that by 3 weeks time the drug should be out of my system. Does that seem logical? I also spoke to a pharmacist who said it will take time for a drug to leave your body when you’ve been on it for a few months and that it can be difficult to navigate side effects as everyone reacts to medications in different ways. The itchiness feels a bit milder today, and skin not burning. I’m hoping the symptoms continue to improve and that I can figure out what the cause is, after which I’ll have to cross the next bridge of what to do, if in fact related to Tamoxifen.
From what Ive read in the past oncologists seem to suggest coming off for 6 weeks to see if symptoms are being caused by the medications , problem is if it’s being caused by something else that could also improve during that time so you’d only really know by coming off for a while then trying again - not straight forward .
I think it’s a good idea to try and get some advice from your oncologist before your appointment in 3 weeks time and agree a plan of action .
I’ve got skin problems as well. I’ve had two chemo sessions (Paclitaxel) and one injection of Trastuzumab. I’ve had no terrible side affects so far except to my skin. Pimples under one eye, whiteheads on my chin, spots on my forehead and a huge spot on my chest. I’ve got a 24hr helpline number to ring but it seems too trivial to be called an emergency. I’m hoping it’ll be OK to wait till Tuesday when I go in again. If you’ve found a product that works I’ll be glad to hear about it.
It sounds like your skin problems are different to what I’ve been experiencing (perhaps due to difference in treatment, my active treatment is complete and I’m now on Tamoxifen). I don’t yet know the cause for mine. I haven’t been able to get an earlier appointment to speak to my oncologist, so counting down the days to see what is suggested when I do in 1 week, as I’ve temporarily stopped my endocrine treatment while I wait and to see if the symptoms subside. I’ve also got an in-person appointment with my GP to see what they say. For me rubbing my skin triggers more itchiness & my skin is also sensitive to heat, so I’m dabbing moisturiser on it rather than rubbing it through as I would have previously done. I’ve not changed what I use (but my usual skincare products were mild to begin with, i.e. low pH, and mostly fragrance free) as I don’t want to meddle introducing another factor that might trigger another reaction before I see my medical team. I’ve changed to the original antihistamine I was on after 10 days on the one that was prescribed by my GP due to bowel changes while on it. Such a lot to juggle and figure out with side-effects. I’ll post an update once I’ve had my appointments. Hope your skin side effects settle, and you get some guidance when you go in next. Take care.