I’ve had a persistent, very itchy rash for about 10 days. My pcp and dermatologist could only see a photo I sent as I’m not allowed in clinic. They thought it was Scabies or Folliculitis and have given me meds for both. Nothing has worked.
Yesterday I did a drive up appointment with our pcp, who came out to the car with a canister to freeze a spot off husband’s arm. I took the opportunity to thrust my foot out of window to show her the rash, also on soles. She has now referred me to onco as she no longer thinks it’s either of aforementioned conditions.
Onco must be too busy to read emails properly as she told me to stay off ibrance for 2 weeks and see. I’ve already been off it for 2 weeks and, at her suggestion last week, will stay off another 4 to give my system a boost during virus.
So hope it’s not the ibrance and Letrozole as I’ve done well in them for 5 months with the exception of low wbc counts and dizziness. Both tolerable compared to what Pfizer indicates are potential effects.
Anyone else had this?
Thanks and all best,
Kathleen
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Red1246
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Last November I developed what I thought was insect bites or hives all over me. They came and went during each cycle for about 4 months. I had to go on antihistamines. But they eventually stooped. None of the medicos knew what they were. I felt totally pushed aside by them all throughout the whole saga. But at least the antihistamines made me feel better.
Thanks so much, TimTam, for your speedy response. Good to hear they went away with antihistamines- what kind? I go bonkers with Benadryl and I’ve heard Prednisone can be just as bad. For the moment I’m taking x 2 Zyrtec daily and hope that may help.
So you never stopped your meds while having the rash? That’s interesting they never suggested it to see if that was the cause. Also, how long were you on the MBC meds before the rash appeared? Very good idea to keep a diary and I’ve photos too. Little red dots in clusters over most of body AND getting dangerously close to genital area so a bit worried! 🙁
Hey Kathleen, so sorry you are having problems with rash. I had one for the first 6 months or so. It started on my fingers.....and moved to my crotch!! YIkes!! I took Zyrtec and tried to ignore it as best I could. Hang in there.
Thanks AndI. Good to know as I’m also in first 6 months and the rash is dangerously close to my crotch as well.🤭
I think I’ve heard from enough people now to conclude it’s the ibrance. I’m so grateful to you snd others for sharing your experiences and remedies - much more helpful than my oncologist. My nurse told me to use Eucerin cream for moisturizing and, since I can’t take Benadryl or Prednisone, she thought Zyrtec would help. So it looks like I’ll just do that and hope for the best..
Thanks so much for responding, Sandra. Good to hear you’ve not had to cope with this as well. And, it may mean not ibrance related, which would please me no end! 😊
All best and hugs,
Kathleen
Hi Red -
I'm sorry about the rash, especially about the mystery / unknown. I do have a different question, though.
Yours is the second post I've read (I'm sure I've missed others...) re: pausing Ibrance in response to the virus. Would you mind telling me where you are located? Is there something in your history that might make this especially important (e.g. past serious infections?)?. I'm barrelling along with very low WBC's, including very low ANC's, with no mention of pausing....I'm curious about why some of us are asked to pause while others are not...
Thanks! I hope the rash clears up (I think TimTam's idea re: antihistamines is a good one)...
I’m in Napa CA and my onco recommended I go off for 6 weeks when corona announced.
I think my age (73), paralyzed left diaphragm (which of course makes breathing hard at times) and low white blood cell counts brought her to this. Plus my metastasis, stable in December scans, is in one area of mid-spine and 2 lymph nodes. I don’t see her often but rather her nurse practitioner, who gave me this directive.
I’m guessing she thinks I’d probably have more trouble with the virus than further metastasis at this time so treating me accordingly. I’m not sure if this helps... Please remember we’re all different and hopefully our doctors are making the right decisions.
Thanks, Kathleen, that's very helpful/informative. I keep thinking about throttling back on the Ibrance, but am currently isolating, although I can't do this forever. If the epidemiologists are correct, this virus will pass through 25-50% of the population...some say even more...How do we get through that event, for each of us? I've gone through every flu cycle with no vaccine (not that I'm opposed, believe me!) but this one is clearly very different. Can I isolate for 12-18 months until a vaccine is developed? What will the cancer do in that time frame? I dunno, but am taking it day by day right now, will sort it out later!
Hi Red,I had rash on my arms, I told my onc and he told me just use moisturizer cream but I didn’t stop taking IBRANCE I am taking IBRANCE only). The rash went away and came back again(moisture did not work). Now I am on cycle 16 and I have a very dry skin all over, but no rash!
Thanks for your reply, Zina. I suppose in the grand scheme of things, our rashes seem insignificant to the oncologists but it’s just one more thing for us to deal with. They all seem to be equally disinterested in them.
My skin has been dry since 35 sessions of radiation in. 2010 and nothing, no matter how expensive or by whom touted, helps.
I can live with it if the rash goes and I’m left with even drier skin. I’m not donning bathing suits much these days. 😊
You’re welcome! You’re right everything else unless don’t kill us seems to be insignificant! Now I am dealing with watery eyes and after seeing two different eye doctors and different meds, none is working! I let go of it! I am using out of counter eye drops and waiting for it to take it’s courses 🤞🏽
I too have watery eyes and have heard from my onc plus ophthalmologist that ibrance tends to dry us out. When the eyes are dry, they water to compensate. I use nightly over the counter Systane lubricating eye ointment (just a bit in each eye) and they also make drops for day time use. You can order from Amazon if you’re not going out.
I agree with your thoughts on their disinterest. I have had a few, (two,) other chronic health problems prior to my mbc diagnosis. And even up to my needing someone to take my mbc pain seriously. It took me almost yelling at a second opinion doctor for them to do a CT scan of my back to find out that it was mbc. No one believed I had pain. 😕☹️
One of my other illnesses is called “granuloma anulare.” An autoimmune disease of the skin. Since taking ibrance and letrazole it has all but cleared up. That’s why I think that there are some things about out medication that may ward off some of these viruses from our poor wracked bodies. We may be luckier rather than the unfortunate ones who are not on our medications! 🤪
Don’t worry. I won’t be out there touching things and testing my theory! But none of my medicos are interested to find out why it’s cleared up! It was driving me demented, and I was feeling depressed and almost suicidal at the thought it may spread to my face. And then I found out I had cancer and started the medication.
The medical profession are only human. They burn out. They are not gods. We need to be our own doctors and researchers in a lot of ways.
Rant over!
Thanks for reading!
Hi Sandra -
Glad you are able to continue with home delivery. I'll mention that, here in the U.S. (I think you're in Canada/UK? ), I always get home delivery and request "signature required" because of the rampant issues with "porch pirates" stealing packages from outside your door! Can you imagine having to pay out of pocket $14,000 because someone stole your Ibrance!
Actually, this brings back a memory from the very fuzzy recesses of my mind! I actually had my Ibrance stolen one time in the Fedex system! I was staying at a hotel in NYC to get scans, etc. (my son was staying in our small apartment) and had the shipment sent there. When it arrived, the envelope had been slashed and was empty!! Hotel security and the concierge worked with Fedex while I frantically called the NY hospital and insurance about getting an emergency supply. I got a one month supply, gratis, from Sloan, PLUS Fedex found the bottle on someone's desk. They had "found it on the floor" (probably stole it and then saw the baggie that read "chemo"! ). So that contributed to my current stockpile since I ended up with an extra month's worth!
So interesting! Kaiser Permanente, my medical group, won’t send ibrance through any mail system.
Seems like your thief might have been hoping for Oxy or something similar - funny (though not for you!) they found chemo pills instead! Probably dropped it immediately in fear! Ha.
I suppose all’s well that ends well however, and you at least have an extra bottle. Must have been very stressful at the time though. Can’t imagine being out-of-pocket for the Pfizer price! My co-pay is bad enough. Though if it’s helping I’m happy to pay it.
Hello ! I have been on Ibrance 125 mg for 29 cycles and I did develop a rash on one side of the body around my waistband and above it . I had it for several months and it came and went ... I didn’t help matters originally as I was constantly scratching it ! I showed it to my onc mid December ( after treating it myself for a few weeks ) and she said it was a bit pink but nothing else at that stage . And I continue to moisturise it now and it’s been clear in the last couple of weeks .
The good news is my ct scan a week ago has come back stable again (4th stable scan ) and I continue on the Ibrance !
I buy big tubs of Eucerin ‘very dry skin Advanced Repair Cream ‘ online , apply it several times a day on the area that was affected and it does help.
My GP prescribed ‘Allacan 10 mg Cetirizine Hydrochloride ‘ ( one a day ) which is for skin allergies , which I took initially when it was at its worst . She also prescribed me 5 tubes of ‘Dermacool ‘ which has 2% menthol in a rich aqueous cream ( you can buy this online )and I used that particularly at nighttime to stop the itching / scratching.
I cut my nails really short now to prevent any nighttime scratching to prevent it restarting again , and I even bought seamless underwear and vests online as it was particularly one side that was itching , and the waistbands were irritating.
Nobody has told me what it was , but after a few months of treating , I appear to have it under control . Hope you can too x
Thank you for the suggestions. I seem to be flaky and peeling all over! My med onc does not seem to be too concerned either and only comments that dry skin is a common side effect of IBRANCE. Has anyone tried any urea based products for dry skin?
Excellent news about your scan results!!! 🎉🎈🙏🏻 May they continue to be stable for many years to come.
The info re your rash is so very helpful - many thanks.
I will definitely mention the Rx you had to my onc nurse Monday and see what she thinks. And, as I’ve got an open cart at Amazon, will add the Drrmacool.
I’m sure you must be very happy with your stability and I’m so happy for you.
Hi, I have been on Ibrance for 5 Cycles. Just last 2 weeks developed a rash on my legs, Onco did not give it much thought just told me to watch out if it continues to spread. However, I decided to try Caladryl lotion and it did work as It seems to be clearing up, no longer itching.
Interesting to read your post as I just got off a video call with my dermatologist. Glad to hear your rash is clearing up. So annoying!
I’ve had my rash for 2 months and I think it might finally be coming to an end. Have been taking 2 x Zyrtec at bedtime (they make me dizzy) and 1 Claritin in the morning. If I could tolerate Benadryl I’d be on that plus using a steroidal cream.
Dermatologist thinks it’s an over reaction to something environmental (insect bite or other) and adds it may also be a result of my immune system leveling out after being suppressed on ibrance.
Thanks for your response! Hopefully you too will be helped by some of the responses I’ve received. All good info. Take care of yourself and try not to work so hard. Hopefully you’re able to work from home at the moment and out if harm’s way.
I had a terribly itchy rash on my hands in the first few mon ths on Ibrance. It was always at the same point in the cycle, about day 21. My onc was puzzled and had never seen that happen. After switching to 100mg after the first month due to low neutrophils it gradually stopped happening. I found Gold Bond excema lotion really helped.
I’m thinking my rash also began around day 21 of March cycle. I’m on 100mg of ibrance now and my onc (and I agree) would like to keep me there. I’ll see how it goes but in the meantime appreciate your input.
I developed a rash on my 4th round of Ibrance 125 that was horrendous itchy, only on top of chest and top of back. I used benedryl gel and my husband to scratch to scratch my back. By the time I started my 6th round I no longer get the rash the rash.
Thanks so much. That’s very helpful. I can’t take Benadryl orally so have been using Zyrtec. Thankfully my husband also scratches my back, but love the idea of using a Benadryl gel which is probably more long lasting.
The benadryl gel is also so cooling..I hope it will pass for you as it did for me. Mine was really really itchy but each month was less, hang in there. FYI keep clothes and bedding to a minimum because the heat increases it.
Yes, I bet it is cooling. Nice! I only wear a tee shirt to bed and inside out so the seams don’t further irritate my skin.
It - the itchiness - gets worse at night. Did yours too? So glad to know it goes away.
I loooove taking hot showers as the water stream feels as if the spots are being scratched. I then towel dry and put on a cream doctor prescribed which isn’t really helping.
I developed a rash across the top of my chest and top of my back on the 3rd round of Ibrance 125. Very itchy. Used Benadryl gel which was cooling, I took claritin, and my Hubby scratched my back for me. It actually diminished for the 4th 5th and 6th round, so now I don't seem to experience it. I have had a little scratchy on this 7th round but nothing to bitch about. I also take zyrtec or claritin daily since I live in Austin TX, which is allergy hot spot.
Thanks for responding! ! I’ve been taken off Ibrance to boost my immune system during pandemic. As the rash continues we know it’s not that in my case. A recent biopsy shows a reaction to meds I’m taking and Letrozole is the only one it could be. I’ll be seeing my dermatologist next week ti have biopsy stitches removed and we’ll discuss what can be done to mitigate the rash so I don’t have to go off Letrozole. It’s working well for me and so strange after 5 months this rash appeared!
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