I'm so sorry you are having these experiences. Have you tried the Mylan brand version? Sometimes you have to call around to get it- like call a hospital pharmacy or a university pharmacy. It is by far the best brand with the least side effects for me. I couldn't tolerate any of the others, except the original brand that I bought on a trip in France. I hope things will get better for you.
I had stage 3 breast cancer in 2017 and did my chemo and radiation with minimal issues. My oncologist then put me on tamoxifen for 5 years and then he will switch me to another drug for the last 5 years....total 10 years!!! When I started taking the tamoxifen at the end of 2017, everything was fine. Then, I started experiencing migraines gradually in 2018 that have gotten worse and now I have itchy hands and feet too. The feet seem to be more so at night when I go to bed. Doesn’t help that I also have neuropathy. I am so, so tired of all of this, that I want to stop taking the drug, but I know it’s not an option. So, my oncologist is reducing my tamoxifen (20 mg/pill) from everyday to every other day to see if it helps with these side effects. I restart in 2 days after having stopped the drug for a week. Good luck everyone! You are not alone!
I have been on tamoxifen since Dec 2018. I started with hives that seemed to be brought on by contact (my shirt, grocery bags, purse, etc). I am typically limited to itching now. I tried different allergy medicine and Zyrtec seems to work the best. I have not changed anything else in my life and assume it is either Tamoxifen or my breast implants causing it. My doctor did a blood test and it did not show any signs of allergic reaction.
Just come across this thread, I’ve got extremely itchy hands and feet the last two days, it’s driving me mad. I’ve read it’s the menopause. Ive been on anastrazole and zolodex for 3 months so I assume as it’s put me straight into menopause this is the reason. It surely does drive u mad the itching 🙄 any tips? Vic x
Hi, I got the itchy scalp after four years on tamoxifen. It is unbearable. At first a cortisone oil from the dermatologist have me relief. Now I have it mostly under control. Every other day I use either selsun blue 2.5% shampoo, alphosyl shampoo or coal tar shampoo. On the days in between I use ihelmet. If I don't use it the itch comes back with a vengeance. Ihelmet gives breast cancer patients a discount. I'm so glad I found a solution though it is a huge amount of work to keep up with. Also if you use ihelmet, lie on your side with a narrow pillow you make yourself. Otherwise it is too heavy and will permanently cause neck pain 😞 Tamoxifen is so difficult. But it is worth it, to live longer. Take care x
My issue is not itching breast but tingling in my hands and a burning sensation under my left arm. I started taking tamoxifen three days ago.
Ten years ago I had a cancerous lump removed from my breast. I received both chemotherapy and radiation. It has now begun to itch unbearably. What's up with this itching?
I have been tamoxifen since sep 2015 . Since the last few months I have been suffering from itchy scalp and skin ( mainly on my bac - spine area) . Have been to a dermatologist who has prescribed elocom lotion - gave me relief for a short while but itching returned when I stopped the lotion. Today I applied it about 3 times - hope it's ok
Just a quick update, blood tests for both liver function and full blood count are normal. GP sympathetic but baffled as to my itching but it seems tamoxifen can be ruled out. Hope it goes as quickly as it appeared! How is everyone else getting along?
Just thought I'd update you regarding Tamoxifen and itching, I've been back to my GP today as the itching is still a problem despite E45/Aveeno, sea salt baths and the occasional application of vinegar! She was very sympathetic and has advised me to have a blood test to check my liver function. As the liver metabolises the drug we're taking she wants to check that all is well as she says that in conditions such as jaundice itching can be a symptom.
I'm hoping we can rule this out obviously, but in the meantime she has prescribed a different anti-histamine.
I'll keep you posted. How's everyone else getting on?
Ah poops, I thought I'd got some kind of allergy to plants, but after 4 days of antihistamines and anti-itching creams, it's not clearing up. I thought I'd Google tamoxifen/itching, and this is the first thing that comes up. My next box is a different brand, so let's see what happens... though I've got several of the old box left - hmmm! I may ask GP/nurses, but sounds like there'snot much they can do!
I'm 67, been on Tamoxifen since October 2016 since having breast cancer surgery and radiology. I noticed that my skin felt dry almost as soon as I started taking Tamoxifen. Then, last summer, I started breaking out in huge, angry bumps all along my jawline, hairline, and forehead, and red splotches popped up on my cheeks. I also got hive-like breaking out along my torso, on my thigh, on one leg, and on my left shoulder. The itching was horrific. My G,P, gave me a prescription Hydrocortisone Cream, and it helped a bit, but, the hives took 3 mos to actually clear up. They would disappear, only to return a couple weeks later. This went on throughout the summer and early fall. When the weather started getting cooler, my symptoms decreased. I live in a semi-tropical state, so as soon as we starting warming up this spring, my break outs came back. I have huge, sore, cyst-like bumps on my face and neck, and there is now a small patch of hives on my torso. I was miserable last summer, and got very depressed, too. I talked with my oncology nurse when it started this spring, and she was sympathetic, but, basically, said there's not much that can be done. I guess that's what's so stressful about this. I would be so grateful if someone could come up with something to help us. Just wanted to let all of you know that you aren't alone and finally, does anyone know if it's okay to stop taking it for awhile, just to get a bit of relief? I am not sure how long it stays in the system, so, if I knew that, perhaps I could make a decision?? Thanks, and please know I'm praying for us all.
I really appreciate your reply, thank you! I hope your oncologist is helpful, keep me posted. In the meantime I'll give the cider vinegar a go, it's on my shopping list for tomorrow. 😀
I've been taking Tamoxifen for 16 months and thought I'd got off quite lightly regarding side effects, apart from the dreaded night sweats! But about 3 weeks ago I started itching, initially across my stomach and top of legs. Went to the doctor's after reading the leaflet (I panicked a bit), but she was happy it was nothing to worry about. I did change my washing power/liquid but quickly changed back when I though this might be the cause.
The itching has got worse despite using the aqueous cream I was prescribed, for moisturizing and showering, and the anti-histamine doesn't seem to have any effect. I've a few random red itchy spots in various places, but feel like I'm covered in them!
Thank you for listening.
Wow, sunnydsmomma, that is one heck of a reaction ! So do you need to take anti allergy meds every day ?
Been on tamoxifan for about a year now. Not only did I have itching and hives but sudden and severe swelling...lips, face, hands, feet, throat. My oncologist sent me to an allergist. She prescribedan epi pen and Zyrtec, which has worked wonderfully. There is somehing specific to Zyrtec that helps skin issues, however it does make you sleepy I have had so many cancer deaths in my family that I am terrified to stop taking the tamoxifin despite the allergic reaction, severe joint pain, and forgetfullness. After reading these posts I will ask her about switching brands. Stick with it ladies, the alternative is not worth it!!!
I was on tamoxifen, not currently, and yes itching of my skin was indeed a side effect I had. It started for me a few weeks in and wasn't as specific as the area as you have, but randomly all over, but I was certainly scratching it to red spots and bleeding in some places! It is my belief that skin changes can be a symptom of menopause ( as BIbi said) and therefore anything that can occur in menopause from hormone changes can occur with tamoxifen ( a BCN told me this). I have been on a prolongeddddd tamoxifen break, and the itching has disappeared. A guess a key to treating it might be to visit the menopause site where and find out if they have got some ideas for what has worked. As yours is on one side only and you have effects down one arm, I would say requires further investigation though.....as you say your primary doctor (GP to us folks here lol) needs to take a look. X
i have just developed raised red spots on my elbow too. They are itchy & a bit flaky (charming!). I tried hydrocortisone & e45 but no improvement. The pharmacist just told me he thinks it looks like psoriasis but I have never had that before. I checked dr Google & it can be the result of hormone changes, so I am pinning that firmly on the tamoxifen. Since my treatment ended I have just had a string of weird things popping up. So depressing when you're trying to get back to normal. If you find any cures please let me know. Hope yours goes soon. x
I am from Miami, FL and two months ago I began tamoxifen - I had been on exemestane and had terrible joint pain. Recently, I have developed little bumps, some red, some not, on my right arm and shoulder. I also have tingling down the arm which feels like someone is squeezing it. I have been to the dermatologist a few times; he has biopsed it, giving me prednisone, but it still persists. My oncologist pooh poohs that this condition has anything to do with Tamoxifen. It seems like I'm not the only one suffering from the itches and ongoing discomfort. Yes, I agree, we're lucky that we have successfully been through the cancer surgery, but the after effects of some of these drugs are terrible. Next week I have an appointment with my primary doctor. I'll wait to hear what he says.
Just wanted to throw in my two cents in case it helps anyone at all...there's a Japanese skin care line called Yu-Be, and their moisturizer is especially strong and known for soothing dry skin, itching, redness, etc. that occurs from side effects of different conditions and treatments. Worth a try!
I took only 3 tamoxifen tablets and felt dry skin all over - nothing helped!! My face is red like a sunburn and feels like a sunburn with a toughened skin on top! Take lits of omega 3 everyday and put oils on my face hourly! It has only stopped getting worse because I stopped taking the pill but that was 2 weeks ago! Any suggestions for me?? Have used the letrozole (?) & anastrazole both with different side effects!
I took only 3 tamoxifen tablets and felt dry skin all over - nothing helped!! My face is red like a sunburn and feels like a sunburn with a toughened skin on top! Take lits of omega 3 everyday and putboils on my face hourly! It has only stopped getting worse because I stopped taking the pill but that was 2 weeks ago! Any suggestions for me?? Have used the letrozole (?) & anastrazole both with different side effects!
Welcome to the forums, you've come to the right place for support as the users of this site have a wealth of experience and knowledge between them.
If you would like to talk to someone in confidence you may like to phone our helpline where you can talk to a member of staff who are there to support you. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.
i saw my oncologyst today for itching as i am on tomoxifin was on it 20 years ago was ok now i have this itching docthinks its because ive got a generic brand tomoxfen and im allergic to something they add to it so i am now getting the real brand of tamoxifen to see how i go
I have found a couple of things to really help with itching (i've had a rash on the top back of my legs too), one being natural sea salt for bathing, I won't name brands but can be bought really cheap in any health food shop (in the cosmetics section). Also neat glycerin (mix with water for moisturising) is good for skin complaints. Any chemist will sell this. Both products have no additives or nasties in them either.
Both are very cheap and very good!
I had been taking Tamoxifen for 6 weeks when I came out in a rash from my neck to my knees . i was told to stop taking them (early Nov 07) then restart beginning of december to allow rash to clear up. rash was so bad I still have scar marks on stomach where I scratched and broke the skin. i restarted as planned but just after 4 tablets the rash returned. the onc has stated that i am allergic to tamoxifen and i'm due to see him on 10th Jan as he wants blood tests done before he confirms his intentions but looks like armidex and zoledex (think thats what it is - i know its an implant to stop the overies doing their job) but he doesn't want me to take tamoxifen again
I have had a rash all over my hands and arms for 2 weeks since swapping to Nolvadex. I was convinced it was the Tam swap then remembered that we have a real Xmas tree this year for the first time ever. Don't know if it is connected. Rash is now easing as I haven't touched the tree for a while. I periodically get weird rashes, however, so I will probably never find out what caused it. Being hot and stressed makes it worse. Cheap, over the counter anti histamines usually help.
Hi Ladies (I don’t quite fit into the girl category any longer! Not too sure about the lady bit either at times but I do try my best!)
The Tamoxifen I have been using since the beginning is also CP Pharmaceuticals Ltd Wrexham UK. I really as I say, have not had any major side effects from them until noticing the itching in the past few weeks and also the problem with my nails thinning. I mentioned the shower moisturiser but forgot to say that I use E45 bath oil. You can also buy E45 emollient bath wash and also body wash. The only problem with the pump action packages was that they tended to block in the pump easily whereas the bath oil comes in a bottle that you can use either in the bath or shower.
I never found that calamine lotion helped me that much, but what did help the prickly heat at one time is putting some bicarbonate of soda in the bath water and having a soak.
Hope this helps,
Love and take care
All the best for 2008,
Just been to the GP about my itching,its all round my jaw and neck also have a cold sore,,,,he said the cold sore is probably the tamoxifen but not the rash.He did say he has seen 100s of patients on tamoxifen and has not come across anything like nettle rash,he has put me on Cetirizine to stop the itching.He did say E45 may help sooth the itching also Hydrocortisone may help but not on my cold sore.
Hope ive helped in some way & sorry to go on a bit lol.
Thanks for the message and kind thoughts.I did have a nice Christmas and New Year mainly because the itchiness seems much better.
Like you I am fair skinned and can get prickly heat in the summer.Anyway have been using Dipro Base cream ( emollient )
which a radiographer gave me on my final visit, first thing and before going to bed. Have stopped using the calamine lotion
and taking the anti histamines.
Will start the tamoxifin again on Friday and am so hoping the awful itchiness doesn't return.
Best wishes for 2008
Thanks for the message.
The tamoxifin I have been taking in the last 2 months is packaged by C P Pharmaceuticalls Ltd Wrexham UK.
Haven't got the details for the first month.
It will be interesting to see what my GP prescribes if the itchiness return after Friday.
Best wishes for 2008
I'm on tamoxifen and get the itching. I've found its eased recently and am wondering if its related to a different brand. Has yours always been packaged the same way?
Hi Diane D
I have been taking Tamoxifen since May 2007. I have had very few side effects, practically none, but in the past few weeks I have noticed that I have very dry and itchy skin in the lower half of my legs and sometimes also on my arms. My nails have been in poor condition (I had quite strong nails before diagnosis but xeloda put paid to that) nail thinning is one of the side effects mentioned in the Tamoxifen leaflet.
I meant to mention the itch when I went for my check up but forgot. I use shower moisturiser which helps. As you say it feels like nettle rash without the rash. I feel it is worth putting up with if it keeps BC at bay. I have not tried anti histamines which I may do once the weather gets warmer!.... Sometimes I do get prickly heat as I am quite fair skinned.
I am prone to dry skin at times which I think probably does not help.
Hope you had a nice Christmas and best wishes for 2008
Love and take care
I've been on tamoxifen since Oct 18. I have been getting itchy all round my torso. It comes & goes. Having read the information leaflet I wondered if it was being caused by dry skin, so I am using moisturiser morning and night. I'm still getting a bit of itching but it's not so bad.
Been taking tamoxifen for 3 months and had no side effects until 3 weeks ago. Its like nettle rash but without the rash on my shoulders ,lower back and arms.Got steadily worse and keeps waking me up during the night,
Am taking sleeping tablets,antihistamines and dabbing with calamine lotion but its driving me mad.
Today I re-read the information leaflet given with the tamoxifen and found out if you have a nettle rash you should stop taking them and contact your doctor IMMEDIATELY! Panicked a bit! My doctor told me to stop taking the pill for a week to see if the tamoxifen's to blame.
Sorry for the rant. But It really is getting me down Finished rads 18 days ago and things were going well.
Would just like to know if anyone else has suffered with this itchiness .how long it lasted and how they coped.