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.
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.
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
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?
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
JANE (Janerc001)
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.
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.
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.
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.
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 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.
I have been on Tamoxifen for a couple months now and just realizing after reading these posts and searching online that I could be getting rash/itching now from the drug. My scalp and neck are so itchy that i can’t hardly stand it. I have itched so bad on my neck that I have red bumps. I had my husband check for lice because it could be itchy but it’s not lice. I think it could be that my hair is gown back now a bit over an inch and is curling back into my scalp and itchy, but it is hurting at this point so I have tried some benedril creame around my neck to see if that helps some. It has brought some relief but my scalp is still itching me like crazy! Maybe I waited too long to wash my hair last week? I don’t know what else could have caused this though other than this Tamoxifen! I don’t see my oncologist until January so I may have to call him! Any suggestions???
Hi, I have been on Tamoxifen for almost 4 months; for the 1st 3 months Everything was fine and I was on a version of tamoxifen that was manufactured by: Watson Pharmeceuticals (WPI/2233) and then I noticed for my first refill that the pill looks different and it is manufactured by:Micromedex (M/274) - according to drugs.com there is a difference in the inactive ingredients including sodium lauryl sulfate… Within the last week I woke up in the middle of the night with a rash on the back of my left leg that was sort of burning and it felt like a bunch of bites and looked like lots of red swollen spots, there were also a couple spots on my right hip, it was starting to go away although on day 4&5 it was quite itchy and then I noticed something like it on my big toe this evening. It is all very painful albeit becoming more tollerable I suppose. I am continuing to take tamoxifen since I was on a weeks course of of Antibiotics so it could have been overload for my system. But I did not find any antihistamines even prescription ones to help. I suppose ice helped a little. Could someone describe their rash better, I took some pics of mine but it doesn’t seem as though I can post photos here.
I too suffer with itching from the tamoxifen. It’s worse when I take a bath. Just last week I came out in a rash that looked like I’d been bitten by fleas, very red and itchy. Dr prescribed anti histamine but doesn’t make much difference.
Aw petal it sounds like you’re having a tough time. I know how much it effects every day life. I was going to stop the tamoxifen a few months ago because of the itching and other se’s. I had a break from the tam over Christmas and then when I went for my next prescription I was given a different brand and thankfully the itching has dissappeared. I am also moisturising regularly. I really hope that you can get it under control tho. Big hugs x
And I thought I was the only one! I hadn’t connected the itchy scalp with Tamoxifen, but thought it must be due to my multitude of treatments - I’ve never mentioned it to my oncologist as I thought it was my hair growing back, but a year after finishing chemo, although I’m still on Herceptin, pertuzamab, Zometa, tamoxifen & Zoladex injection, I don’t think it is! Would love t know of any scalp treatments that help, and also for the sore/cracked skin on fingers. Also, does anyone else have trouble with their toes? Lol! Thanks 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.
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
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!!!