Tamoxifen side effects—prickly skin

Blacksheep27

I'm sure there's already a forum or discussion thread for this, but I can't find it, so here goes another one:

I'm in MENOPAUSE NUMBER THREE AND IT'S THE WORST OF ALL! MY SKIN IS CRAWLING!

I'm 70, so—menopause #1 was decades ago. I had a mastectomy in Jan 2013 (left side only - IDC, 2cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR+, HER2-) with no radiation or chemo. I took Letrozole for 5 years (menopause #2.) My oncologist switched me to Tamoxifen earlier this year—better for old-lady bones, he said. I had gotten used to the Letrozole side-effects, so the Tamoxifen has apparently sent me into menopause #3 and I'm not liking it at all. Mood swings—check. Insomnia—check. Hot flashes—the worst ever, day and night. And now that the weather is warming up for summer, I am experiencing, for the first time, the most horrible skin prickling and itching—mostly on my head, neck and shoulders, arms, and chest. I swear it feels like bugs are crawling on me. Nothing visible, no rash or other signs, and it's not constant. I shower and change my clothes twice a day, and that only helps briefly. I've been wearing stretchy camisoles since surgery (I'm happy being a breast and a chest,) and have switched to 100% cotton, looser camisoles, but this doesn't seem to help, either.

Has anyone else had this side-effect from Tamoxifen or other HRT? And what have you done? I thought I'd check here before whining to my oncologist.

VL22

I’ve been on Tamoxifen for three months and I started having that crawling skin sensation 2 months in. Mine started with a tingling numbness in my cheek. I thought it was my seasonal allergies. Started taking Claritin. My MO said not the tamoxifen. Stopped for two weeks, stopped taking Claritin then bam! My head, my legs, my arms.

So I kept taking Claritin, waiting for it to stop, stressing that maybe it was mets. I finally decided to take a break from Tamoxifen to see if it went away. Today is day 5 and yes, it is less and less. My tamoxifen drug fact sheet says “numb and tingling skin” may occur, so not sure why my MO said it couldn’t be an SE.

I did some internet searching and it can be found as an SE of menopause - not common however. Look up “formication” .

It’s horrible. If you do talk to your MO, please let me know what is said. I’m going to stay off it for 2 weeks.

Hope you feel better

Lula73

I have a little experience with this. A 24hr antihistamine like Claritin/Zyrtec/Xyxal/Allegra may help. The other thing that helps a lot (even with formication - note that’s spelled with an ‘M’ and not an ‘N’) is Vagisil cream. It basically numbs the feeling. I’ve used it over my back, shoulders, arms, neck and décolletage areas for that prickly, itchy, god awful, want to jump out of your skin SE. It works within seconds. The Walmart brand works just as well and is less expensive. Tried Target brand and would not recommend it as it didn’t rub in well at all. And yes it’s safe to use on other areas of the body...it does not contain anything that actually treats a yeast infection. It’s actually the same formulation as Lanacane (but they don’t sell it in the US anymore). Unfortunately this is not an option for the scalp if you have hair as it would make a huge mess.

Rozma

Hi, good evening. I'm rozma from indonesia, my parents/51y.o have been drinking tamoxifen for 2 years. But after I read book the side effects there is endometrial cancer and increase tumor? I became anxious with my parents. Please explain. thanks before

Or any somebody have experiance about tamoxifen?

dtad

Blacksheep...it sounds like neuropathy to me. Especially if there is no rash. It can be a side effect. Neuropathy drugs such as Neurotin can help if you want to continue the anti hormone therapy. Good luck and keep us posted.

Moderators

Dear Rozma,

Welcome to the BCO community. We are sorry that your parents' cancer has brought you here but glad that you reached out to our members for more information. Here is a link to more information about Tamoxifen on our main site. You also may want to review the topic A Bottle of Tamoxifen in the Hormonal Therapy Forum where there is even more information shared by members. Let us know if you need help navigating your way around. The Mods

new2bc

I have been taking Tamoxifen for more than 5 years. Recently I feel like having neuropathy in my toes . I did not have chemo, just radiation. I stopped Tamoxifen for 3 days and my feet were better. I took Tamoxifen again last night and the problem is back. Anyone experienced this? I also saw an orthopedic doctor last month which revealed I have arthritis in my feet. Does Tamoxifen cause arthritis?