Just wondering if there is anyone out there like me.
Started taking Tamoxifen 9 Nov 2010…absolutely no side effects whatsoever, regular periods etc…then on March 8th almost 4 months to the day started with a red hot itchy rash on the treated breast (had 21 sessions of radiotherapy, no chemo). GP presumed Radiation dermatitis and prescribed anti histamines to help me stop scratching and steroid cream (Betamethasone)…it worked…rash went…but it just travelled to more or less the rest of my body (back of neck, waist, hips, lower back, chest and underarms). Saw GP again last Fri who now agreed likely to be the Tamoxifen and is writing to Onc about switching to another drug.
Although itchy rash is mentioned on some web sites it doesn’t seem to be one of the major side effects. At my wits end with the itching and soreness.
Would be good to hear from anyone who has suffered similar?
Bettina - have you tried different brands of Tamoxifen? Sometimes it’s the bulking agents of drugs that cause allergic reactions, and these vary between manufacturers.
Yes I’ve thought about that especially as I had one month on Wockhardt 2 on APS then switched back to Wockhardt and then the rash appeared. I had been told that the Tamoxifen takes around 3-4 months to fully get into your system (I was querying why my periods hadn’t stopped yet)…so this 4 month timing would tie in with the rash starting rather than the brand as I was OK on the first month of Wockhardt…there again…could be the build up of Wockhardt in my system…Have just started on a pack of Generics today so wondering if that will make a difference…either that or maybe my body will just all of a sudden get used to it and stop treating it like an invader (which of course it is)…I do kin dof get the impression from the medical profession that I should feel lucky it’s a rash and not cnacer…but when you live with it every day it gets you down…when your tolerance levels are already lowered 'cos of the whol BC thing.
Hi Sebflyte - I was really interested to read your post as I am going through exactly the same thing right now!
I started Tamoxifen last September 2010 7 months ago before commencing radiotherapy which I finished on 21st December (so pretty much 4 months ago to the day) - I had 35 treatments of radiotherapy.
Almost 2 weeks ago my breast went red hot again right over the treated area with a rash and unbearable itching - the symptoms were actually worse than they had been during my radiotherapy treatment. I went to my GP who prescribed hydrocortisone which I used for a couple of days but I felt it was actually making the heat and itching worse. I spoke to my breast care nurse who thought it might be a ‘recall’ reaction to the radiotherapy (almost a delayed reaction) and she advised me to get in contact if it got worse.
After about 6 days the rash and heat went down however about 3 or 4 days after that (so beginning of last week) I began to get a rash and itching over the untreated breast and this rash has now spread to all over my stomach and my hip and each day it is worse. I should have contacted my bc care nurse but didn’t and now it is so itchy it is keeping me awake at night and I want to tear my own skin off! As it is the bank holiday weekend I can’t speak to anyone on tuesday but I will be calling them as soon as I can. I had a wee browse around the internet and have been wondering if it is a reaction to the tamoxifen so I will be interested to see what they say.
To top it all off I have to go for another appt at bc clinic as my GP was unsure about some lumpiness around the site of my scar and I have been worrying myself sick about it - I was hoping after radio treatment things would start to look up!
Thanks for adding to the thread although sorry to here you are suffering too.
The good news is that my rash and itching has completely gone. The bad news is that I am no further along with a definitive answer as to the cause. However, trusting my gut instinct which I did to satrt with when finding the lump I think it’s the Tamoxifen.
I have posted a few time smonths ago about how women get side effects to different brands. I thought it was not relelvant to me as I’d already previously taken the brand I was taking when I got the rash. However, I’ve now tried a 3rd brand and a week after starting it the itching went and I could cut down the anti histamines. I have also found on the interent research that explains with a drug allergy, there are very few true drug allergies…and in a lot of cases the allergic reactions show after taking the drug for the SECOND time…it seems the body remembers the “harmful” substance and has a built in defence ready for next time. This would fit with my situation as I first took Wockhardt for a month then APS for 2 months then back onto Wockhardt and it was after 2 weeks back on Wockhardt it all started. G.P. said that radiotherapy does in some way compromise the immune system (why they know not) and that could be the reason the symptoms/rash appear on the treated area to start with.
The location of your rash seem identical to mine…treated breast then other breast, stomach, hips and spreading round to base of spine/buttocks… I found it hardest to control on my upper chest areaa going up my neck where the skin is thinner. Nothing on arms or legs.
The itching became more of a stabbing with needles type feeling followed by burning if I scratched it. I dosed myself up on anti histamines (Chlorphenamine 5 times day and Loratedine once at night)…the steroid cream made liitle difference and I was aware it may thin my skin anyway so stuck to aqueous cream. This was a strategy to bear it but only changing the brand of Tamoxifen changed the symptoms. I was told on starting Tamoxifen it takes 6 months for the body to assimilate it. Have you changed brands since starting?
My skin on my chest area got really dry and flaky and peeled quite heavily in patches but that was 2 weeks ago and it’s now back to normal and feels very soft even if it does look a bit wrinkly (but I think this is the effect of the Tamoxifen on skin per se…(the menopausal thing, where the elasticity goes).
Sorry to ramble on…hope you get some relief…feel free to contact me to ask about anything further…hope all is ok with the lumpiness around site of scar…? I know it’s worrying…any little thing but I think it’s natural and best to be aware and get stuff checked than not.
Thank you so much for your informative and detailed comment! I am so glad that the rash and itching has gone for you. Can I ask you how long that took to go? I spoke to my breast care nurse on tuesday and she advised me to stop taking it till I go for my check up tomorrow and then hopefully there will be someone who can help me and advise me. I know it has only been a couple of days but the rash doesn’t seem to be any better and is still as angry looking.
I too read the post on different brands of tamoxifen - it seems to be a minefield and it also feels from other people experiences as if the professionals don’t exactly take the situation seriously so it will be interesting to see what my breast clinic say.
It is also interesting your comment about the reaction occuring after the SECOND time of taking the drug. I had a weeks break about 3 weeks ago as i had forgotten to get my prescription organised so had no tablets to take and in hindsight it was after re-starting tamoxifen that this reaction started so I shall mention that tomorrow.
The pattern of the rash does seem identical - although my breasts are red and itchy the rash does not seem so bad there now - it is worst on my stomach and hip.
I haven’t changed brands atall - have been taking the Wokhardt (sp?) brand since the beginning but with the week break about 3-4 weeks ago.
I do hope you find some solution to the cause - I feel as if I have become a hypochondriac since my diagnosis - every little thing sets alarm bells ringing - I guess that is the worst thing for me about all of this - feeling it has changed my personality from being level headed to hypersensitive. I have my appointment tomorrow morning (no watching the royal wedding for me!) and can’t wait for my mind to be put at ease.
How long the itching took to go is a difficult one to answer.I started itching around end of Feb…it stopped 12th April…I know that date as it was such a relief to suddenly realise I’ve stopped feeling like an ant’s nest is crawling all over me at feeding time!
In hindsight I suffered for 2 weeks not doing anything . Just using aqueous ceam, wearing loose clothing, cool baths and lying on my bed feeling sorry for myself etc before going to GP and getting the anti histamines. But at first these and steroid cream(Betamethosone) made no difference…think the anti histamines took a while to build up in my system. I would say I took them for 2 weeks before I noticed the itching was controllable, not gone but I had respite where I didn’t feel so uncomfortable and then just looked out for the prickling returning and then took another pill…the Chlorphenamine was meant to be 3 a day but as GP said they are not addictive and the body doesn’t get used to them I upped the dose to between 4-6, with the one Loratedine at night…and that seemed to work…that is as well as changing brands…that was on 5th April…so at same time as I could control the severity of itching…but it took only a week from then for it to go to the extent I found I was taking less antihistramines (down to 2 or 3 a day)…which is what makes me suspect the brand of Tamoxifen.
It was Wockhardt so if that is all you have taken it may be worthing trying a different brand…
Re stopping the Tamox…I know it is supposed to stay in your system for a while (and that makes sense as they say it takes around 6 months fore your body to fully assimilate it) but if my theory is correct you would notice a difference in about a week to 10 days. If you’re pre-menopausal/young (I’m 46) there is no alternative drug…so even though we are the ones suffering and it’s our call ultoimately as to whether we take the Tamoxifen, I took the view I’d put up with the rash itching rather than risk a recurrence or a 2nd new tumour.
I’m just back from GP this morning…got stocked up on 2 months supply of the anti-histamines and tamoxifen…going to try to reduce anti-histamines right down but wanted a stock in case it flares up again…will let you know.
I agree, I feel like a hypochondriac/very old person. I’ve hardly ever taken medication in the past…making up for it now:-) But you know I think feeling that way is completely normal…after what we’ve been through how can you not be on high alert for every little thing…and better to be safe than sorry (well for me…I know some people prefer “not to know”).
Good luck, if that’s the right phrase, for tomorrow…let me know how you got on
This is amazing as I seem to have an identical rash - it started on my untreated breast, under arm, around waist and on hips. It is red, raised and incredibly itchy! It comes and goes in different places but is mostly always there - the doctor doesn’t know what it is and has treated me for different things including eczema with a strong steroid. It is at its worst today and I am going to the doctors later.
I have been taking Tamoxifen for almost 4 years though, however, the past couple of months I have been on completely different ones in a green foil packet. I just wonder whether it is these tablets which have started this rash off.
As I am currently awaiting a liver ultrasound due to tenderness under my right rib I was worried it might be to do with the liver, but have heard that liver related itching doesnt usually have a rash.