Has anyone else suffered a rash a few days in from taking Exemestane?
I tried Letrozole for 8 months, then Anastrozole for 8 months, but couldn’t cope with the severe joint pain & lack of mobility.
I had been so hopeful that changing to Exemestane would help, but instead, I have come up in severe, burning hives all over my body 
.
The lovely BCN nurse said to give it time, which I will.
How long did it last for any of you?
Hello
I’m not on Exemestane but I know a lot of people who are and I haven’t heard of anyone else having this reaction . It sounds as though you have a good relationship with your BCN which I have no wish to undermine but if this was me I would be quite concerned. If it’s no better on Monday I would be calling for advice and it might also be worth speaking to the Nurses on the helpline here as I’m sure they will have dealt with this before on 0808 800 6000 9am to 4pm .
Also think if there is a possibility that this could be related to anything else - new toiletries / washing powder / other new medication or an interaction between Exemestane and any other medication that you have been taking. I hope you get some improvement before Monday though . Xx
Thank you so much for your response.
It was actually a Nurse at the helpline that I spoke to (we don’t have allocated BCN Nurses at our trust). She says that apparently, itching is common when starting to take Exemestane, & that 1 in 10 women suffer from it.
She also thinks that as I have suffered such extreme inflammation reactions to each of the AIs so far, that I have a sensitivity to them. She said to give it time & hopefully my body will get used to the new drug.
I so hope this latest side effect settles soon - (I’m currently covered in Calamine lotion & the smell reminds me of when my children had chicken pox!).
The rash is definitely not down to washing powder/toiletries/drug interactions or similar, but is due to me starting Exemestane. Like you, I had been unaware of this particular side effect & I would love to hear from anyone else who had developed a rash too, & how long it lasted.
Wishing you all the best Xx
Hello, I also had a hives-like rash when I first started exemestane. I tried antihistamines and using an eczema skin care protocol but was still very itchy. My oncologist had me stop taking it for a month until the skin symptoms cleared up. I then restarted the drug and, although my skin is more sensitive than it used to be, I no longer have the rashes. I do continue to take a daily antihistamine as well.
In retrospect, I think my entire body was just overwhelmed, as I started ovarian suppression, exemestane and had radiotherapy all at the same time. It was a pretty brutal combination, and my immune system was also haywire after months of chemo beforehand.
Thank you so much for your reply @Briallen. It is very reassuring to hear that you have been in exactly the same situation.
A Breast Care nurse from my local trust has just rung & suggested that I stop taking Exemestane for 2 weeks whilst I try to get my GP to get the rash under control with a stronger antihistamine or steroids. To be honest, it seems pretty scary to feel unprotected for that time, but hopefully it will sort the rash & I’ll be able to go back onto Exemestane even if, like you, I have to take an antihistamine every day to counteract any skin effects. I would be happy with that.
I really appreciate your response & hope things are going well for you.
Xx
I am doing a lot better, have been on exemestane for over 16 months now. The side effects have become tolerable and I have found a lot of lifestyle changes that have helped along the way. I hope things get easier for you too 
Hello
I have been on Exemestane for 6 months and the severe burning hives have only got worse. MY BCN suggested I stopped taking them for a while because they were making life so miserable. I wondered how you got on eventually. Did your skin improve for you. I too have tried Letrozole and Anastrozole and am feeling scared about being unprotected against my cancer returning.
Hallo @alfie10
I’m so sorry you have been experiencing the same burning hives.
My oncologist wasn’t happy for me to go back on Exemestane due to the severity of the rash. It appears that I react badly and suffer from extreme inflammation when taking the AIs - Letrozole caused joint inflammation and carpal tunnel syndrome, Anastrozole caused even worse joint inflammation and I also developed plantar fasciitis, and Exemestane caused joint inflammation plus a very severe skin rash, and the Oncologist was concerned as to whether it might be affecting anything internally too.
I had looked into it a bit and asked whether he would be willing for me to try the original, branded version of Exemestane (which is called Aromasin) as it has less fillers, rather than have to try Tamoxifen (I have previously had blood clots so have been wary of going that) and he agreed that I could try it. And, over a year and a half later, I am still continuing to take Aromasin. I still have painful inflammation in my joints, so I hobble and limp, and it’s sometimes pretty miserable, but on the whole the pain is now manageable and I’m definitely coping better than on the other AIs.
I wonder if it might be worth you asking to try Aromasin? Apparently it is much more expensive than the generic version so it doesn’t tend to be prescribed at first, but for me, it has been a game changer. I know what you mean about not wanting to feel unprotected - I feel that I definitely want to do as much as I can and feel as safe as possible.
Wishing you all the very best. Let me know how you get on?
Xx
Thank you so much for replying. It can feel very lonely and frightening when something like this happens. The inflammation is such that I feel permanently hot and itchy. Sleeping is difficult so in turn that affects my mood. I have an appointment with an oncologist in October to review my medication. I’ll certainly take your suggestion about Aromasin . May I ask how long it took for your hives to go once you stopped Exemestane and did you take steroids to help? I do take a daily antihistamine but not sure it’s helping.
Hi @alfie10
Yes, it can all feel such a lonely journey 
. And then it seems that some of us have more unusual side effects from the AIs so that can feel even more lonely .
I was prescribed a very strong anti-histamine which cleared the rash over a period of 3 weeks back in February 2025. I then had a 3 week break from Exemestane and started taking Aromasin in March 2025. I have always kept a symptom diary as suggested by someone on here, and I can see that it took a few months for the stiffness to become more manageable, but maybe, because I wasn’t also having to deal with the “extra” conditions that came alongside the first AIs, I could cope with that level of discomfort. I still can. I don’t love it, and when I am with friends who don’t have mobility issues, I can feel very “different”, and “disabled” due to the physical limitations, but I would say that I have now got my life back, although it’s not quite the same as before and I have had to adapt stuff. (I used to be a power-walker and now I walk very slowly and hobble - BUT I’m grateful to be able to walk as even getting up and down stairs was excruciating when I was taking Anastrozole).
Since starting on AIs and experiencing the inflammation, I have taken a daily cod liver oil capsule plus glucosamine chondroitin and I also now take a daily anti-histamine (Clarityn) as some people say that seems to help a little with inflammation 
.
What did you find difficult about the other AIs you tried? Did you have joint inflammation too?
I really hope that your Oncologist is willing for you to change to Aromasin. It sounds like you’re really having a miserable time at the moment, and I agree, that you desperately need to be to sleep.
Lots of love to you and do let me know how things are going for you xx
Thank you. I’m seeing the GP next week. What strong antihistamine were you prescribed initially? I can ask him to prescribe some.
I’m going to be tested for allergies. Since being on this medication I’ve developed an allergy to my beloved dog , grass and plants. Never had this problem before. I was a gardener but can’t do it now.
I think my poor system is just overloaded. I had a mastectomy but got cellulitis. Septic shock and then straight to chemo. Only one round and then I collapsed. Then they discovered I was also HER 2 positive. I’ve just finished a year of Phesgo. The problem has been knowing if the Phesgo or Exemestane is the main culprit. Probably both. However I finished Phesgo a while ago and my skin and allergies and inflammation are getting worse not better. My mood has plummeted. I think in part because it’s been a long time to have burning hives and heat and I expected to feel better once I completed the Phesgo. Fortunately whilst I am stiff but it’d not too bad. I do yoga and that helps. Luckily I can walk okay but I still get fatigue.
I just want to get on with life and have done really well but itchy skin and scalp non stop for a year is so debilitating.
Oh @alfie10 you have had a gruesome time of it. It’s bad enough being diagnosed in the first place but it seems that you have lurched from one health issue to the next, with no let up or time for recovery . I’m so sorry. No wonder you’re totally fed up and exhausted with it all.
My GP prescribed Fexofenadine for the burning rash, which worked, but the Oncologist was surprised that was the one I was given - no idea why. I was just relieved it was effective.
Huge love to you and hoping that things will turn a corner soon and that you will get your life back. I was diagnosed in 2023 so it has been a long journey getting to this point. I so hope that for you too 
.
Xx
Hi @alfie10 I have been struggling with both itchy skin and joint pain. Following chemo last year I was put on Phesgo and anastrozole and to start with all was good, then all of a sudden I got an itchy acne like rash over both arms and neck. I am on strong Fexofenadine but they don’t take the rash or itch away but make it slightly more bearable. I moved to Phesgo intravenously and changed from anastrozole to letrozole. The rash improved a little but my hip joints are so painful especially when I get up and take first few steps or walk too far. I have dogs and walking is a big part of my daily routine. I went back on anastrozole but the itching came back so now have been on exemestane for a week and my arms and neck are so itchy today. My arms are peppered with scars can’t help but scratch. I haven’t found a cream that takes the itch away. The best I found was E45 itch cream but does not take it away just soothes it for a while so I can get to sleep. Hips are still painful but Pilates today has helped. Have you found any creams that help with the itch?
Just to say you’re not alone - it’s so hard with all the side effects - seems never ending and the thought of having to take these drugs for life fills me with dread!