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.
Just posting an update after having seen both my GP and Oncologist.
I prepared a diary of symptoms along with a diary of the tamoxifen prescription brands I had been on since I started the medication. The latter point about brands was after speaking to a pharmacist while I waited for my oncology appointment.
I explained my skin symptoms and also showed photos of them to my Oncologist. And also repeated what I had noted in my diary about progression and also point about brands. I also asked questions about any evidence of them being connected to cancer itself.
She said that she hadn’t seen the skin symptoms I had experienced at the beginning but said the raised circular inflammation skin patches did look like I had had some sort of allergy like a viral infection but that it was difficult to say what it was really related to after asking if I had either felt unwell or been in the outdoors a lot, which I hadn’t.
But when it came to the hives symptoms & reaction, she said she had seen other patients who had experienced this before while on Tamoxifen (so a known allergy). Given the change in brands and the timing of when these symptoms first appeared she suspects that I may be overly sensitive (allergic) to the coating on the one or two brands I took while experiencing the symptoms rather than the Tamoxifen drug itself. She said she had seen many patients who were sensitive to certain brands (so not unusual, but it also doesn’t affect everyone). Unfortunately the only way you will find out is by trying one or more brands first.
Reasoning was because I was doing fine while taking the first brand. So she has suggested that I recommence taking Tamoxifen, but to request the first brand I was on (I’ve been on 5 week break and my skin symptoms cleared after 4 weeks of my break, with the exception of some mild sensitivity of my scalp). Coincidently the 4th prescription brand I was given was of that brand so I’ve just restarted it today to see how I get on and hopefully verify whether this hypothesis is correct.
Keeping everything crossed that it is, but will then need to figure out how I manage requesting future prescriptions to be of that particular brand rather than ad-hoc ones. Interested to hear from anyone else who has managed to do this for any reason linked to side effects.
Thank you balchik. I’ve just posted an update after seeing my Oncologist. Hopefully there is something there which will help you decide what’s right for you if the reason you haven’t opened your Tamoxifen yet is due to fear of side effects. The only guidance I’d give is to speak with your oncologist to make sure you are making the correct decision for you, based on your own cancer profile risk factors and concerns over side effects which may or may not affect you
I will post a further update in a few weeks, so that you can see how I get on having recommenced it today.
Thank you TDG. I have my last post surgery follow up appointment on 23 Oct, but I don’t think anyone is going to persuade me to take Tamoxifen, my instinct is just telling me No. I fully expect a recurrence whether I take the Tamoxifen or I don’t, I’m hoping it will be Primary and not Secondary Cancer if it returns. Until then I’m going to enjoy being in good health. Hope it works out for you with the Tamoxifen, I’ll keep a lookout for updates.
It would be a good idea to try a different manufacturer to see if you have the same issues. (I take Mylan as this seems to be less problematic for many users based on message boards I’ve read). Also, I asked my medical oncologist for 5 mg instead of the standard 20 mg. (I use a pill splitter on a 10 mg tab to get a 5 mg dose.). I can be very sensitive to medication and have read the horror stories about Tamoxifen side effects, so I wanted to start low and consider going up in dosage if the side effects were tolerable. I am staying at 5 mg for now.
Just posting an update as it’s just over 2 weeks after restarting tamoxifen. I’m on the brand I took during my first month (Relonchem) when I didn’t experience skin issues and so far so good.
The only observation I’ve noted is that my scalp feels itchy, possibly dry. But it’s intermittent and not severe, so something that I consider manageable as it stands. I’m still keeping a watchful eye on any changes.
Thanks @katie5515 for the tip about “Mylan”, if for any reason my pharmacist can’t get a hold of “Relonchem” when my next prescription is due, I’ll ask them to try that one to see if I tolerate it better. Do your prescriptions have the brand name mentioned on them now?
@TDG I use Walgreen’s pharmacy in Illinois, USA. The manufacturer is listed in the bottle label and on the receipt/paperwork stapled to the bag when I receive it. I ask for this manufacturer specifically when I refill it monthly.
Hey TDG—that sounds really unpleasant/uncomfortable! I don’t have personal experience with Tamoxifen (my mom wasn’t put on it with her BC). I hope you get to the bottom of it soon.
Wanted to let you know that you might want to check out Dave the AI Cancer Mentor, he’s this amazing personalized AI mentor app who is able to answer questions related to cancer—about treatments, symptoms, side effects, etc. He might have some insight for you on this. He’s also really empathetic/supportive. You can check it out
playstore/app store under BelongAI – Dave Cancer Mentor. Lots of reviews there also, ppl seem to really like him! I found him really helpful providing info as a family member of cancer patient.