I just started taking Revlimid 25 mg and after about 5 days I started to get a rash all over that is red bumps and itches very bad. I only took it 7 days and now am on my week break from my chemo stuff. Next Monday before starting it all back up I see the doctor.
In the mean time, I was wondering if a lot of people get this rash? I looked it up online and the pictures of Revlimid rash looks just like what I am getting. I can't imagine how bad it will be after 3 weeks straight of taking this pill. Grrr
Any tricks you can share about this? What kind of cream did you use for it or did you take any meds? I have been using Benadryl [diphenhydramine] cream & pills. The pills help a little with the itching, but the cream doesn't seem to be helping much.
Any tips for this itching lady here?
Forums
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Terri Michigan - Name: Terri Michigan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 2009
- Age at diagnosis: 45
Re: Revlimid - rash and itching - any tips?
Big question: have you told your oncologist about this?
Because this rash CAN be very serious. I'm not saying that it absolutely is, or probably, or even likely is, but it certainly can be, and every single month I'm told to check and be certain to report ANY rash to my doctor because of the chance that it could be a life threatening problem.
Because this rash CAN be very serious. I'm not saying that it absolutely is, or probably, or even likely is, but it certainly can be, and every single month I'm told to check and be certain to report ANY rash to my doctor because of the chance that it could be a life threatening problem.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Revlimid - rash and itching - any tips?
Terri,
When I started my treatments of Revlimid and dexamethasone in February of this year I had a rash that started at the back of my neck and then continued around to the side of my face. It seemed to show up overnight. I called my oncologist and he had me come in to his office. As dianaiad said it should be looked at by your doctor.
What my oncologist prescribed was over the counter Aveeno skin healing ointment and Allegra Allergy 180Mg. I only needed to take the Allegra for a couple of days and i continued to use the Aveeno ointment for about 8 or 9 days. It really worked well. The rash was mostly gone after about 4 days.
When I started my treatments of Revlimid and dexamethasone in February of this year I had a rash that started at the back of my neck and then continued around to the side of my face. It seemed to show up overnight. I called my oncologist and he had me come in to his office. As dianaiad said it should be looked at by your doctor.
What my oncologist prescribed was over the counter Aveeno skin healing ointment and Allegra Allergy 180Mg. I only needed to take the Allegra for a couple of days and i continued to use the Aveeno ointment for about 8 or 9 days. It really worked well. The rash was mostly gone after about 4 days.
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Revlimid - rash and itching - any tips?
Rash seems to be a fairly common side effect of Revlimid maintenance. I just did a search here for postings that mention both "Revlimid" and "rash", and came up with 9 pages of results!
https://myelomabeacon.org/forum/search.php?keywords=Revlimid+rash&terms=all&author=&sc=1&sf=all&sr=posts&sk=t&sd=d&st=0&ch=300&t=0&submit=Search
That said, dianaiad is correct that, particularly because you've just started the Revlimid maintenance therapy, you should let your doctor know about the side effect. One particularly serious side effect of Revlimid maintenance that is seen in very isolated cases is severe skin condition known as Stevens-Johnson syndrome. It's NASTY -- and potentially life-threatening. (The Wikipedia page about Stevens-Johnson syndrome is NOT for the faint hearted.)
The official U.S. prescribing information for Revlimid warns about the possibility of Stevens-Johnson syndrome on the first page. See the "Warnings and Precautions" section in this document:
http://www.accessdata.fda.gov/drugsatfda_docs/label/2013/021880s038lbl.pdf
Most likely, this isn't anything serious and you and your doctors will figure out a way to address it. But this isn't something you want to take too lightly.
https://myelomabeacon.org/forum/search.php?keywords=Revlimid+rash&terms=all&author=&sc=1&sf=all&sr=posts&sk=t&sd=d&st=0&ch=300&t=0&submit=Search
That said, dianaiad is correct that, particularly because you've just started the Revlimid maintenance therapy, you should let your doctor know about the side effect. One particularly serious side effect of Revlimid maintenance that is seen in very isolated cases is severe skin condition known as Stevens-Johnson syndrome. It's NASTY -- and potentially life-threatening. (The Wikipedia page about Stevens-Johnson syndrome is NOT for the faint hearted.)
The official U.S. prescribing information for Revlimid warns about the possibility of Stevens-Johnson syndrome on the first page. See the "Warnings and Precautions" section in this document:
http://www.accessdata.fda.gov/drugsatfda_docs/label/2013/021880s038lbl.pdf
Most likely, this isn't anything serious and you and your doctors will figure out a way to address it. But this isn't something you want to take too lightly.
Re: Revlimid - rash and itching - any tips?
My husband had a severe full body rash- turns out he is allergic to Revlimid (it also caused a serious drop in his blood pressure)- continuing to take the Revlimid could have been life threatening. All rashes should be checked out so the Dr can determine if it is a side effect or an allergic reaction. Hope it gets better soon!
Re: Revlimid - rash and itching - any tips?
Terri-
When I first took Revlimid during induction treatment, I never had problems with a rash. I was taking 15 mg for 21 days on and 7 days off.
When I restarted taking it again after relapsing I had a rash on my head for a few days during the first and second cycles. Both times I took Benadryl and it helped to control the itching. I haven't had any problems with a rash since then - 18 months later. Again I'm taking 15 mg for 21 days on and 7 days off.
As the others have suggested, make sure that you let your oncologist know of the rash. I would call his/her office prior to your visit next week.
What is your dosing schedule? 25 mg for 7 days and then 7 days off seems to be an unusual dosing schedule. Is this your first line of treatment, a change in treatment, maintenance, or relapse treatment?
Nancy in Phila
When I first took Revlimid during induction treatment, I never had problems with a rash. I was taking 15 mg for 21 days on and 7 days off.
When I restarted taking it again after relapsing I had a rash on my head for a few days during the first and second cycles. Both times I took Benadryl and it helped to control the itching. I haven't had any problems with a rash since then - 18 months later. Again I'm taking 15 mg for 21 days on and 7 days off.
As the others have suggested, make sure that you let your oncologist know of the rash. I would call his/her office prior to your visit next week.
What is your dosing schedule? 25 mg for 7 days and then 7 days off seems to be an unusual dosing schedule. Is this your first line of treatment, a change in treatment, maintenance, or relapse treatment?
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Revlimid - rash and itching - any tips?
Thanks for all of the replies, I will definitely call my doctor tomorrow.
I am new to chemo treatments & have been taking Velcade / dex for a little over a month. I just received the Revlimid 25 mg & only had a week left in the cycle of Velcade / dex, so the doctor said take it for a week, no chemo for a week, then start everything back up on the 23rd. 3 weeks on 1 week off I believe will be how it goes.
I did look up Stevens-Johnson syndrome and it is scary looking. My rash isn't anything near that but it is driving me crazy and it is still spreading even though my last pill was 2 days ago. While googling rash / Revlimid this link came up:
http://www.drug-injury.com/druginjurycom/2008/10/revlimid-fda-says-celgene-drug-may-cause-skin-reaction---revlimid-lenalidomide---wsj-september-19-2008---by-jennifer-corb.html
and it is making me a little nervous. If I am allergic to it and can't take it, what will I take? I need to get this multiple myeloma taken care of some way.
Seems like this stuff is all scary and frustrating. I read the book about side effects etc when they mailed me my meds. Seems like it said everything and anything terrible can happen to you. It said everything except that it will cure my cancer or make me well.
I also have a hoarse sounding voice when I talk now, no pain just sound hoarse. I googled that and it looks like the dex can cause that? Has anyone experienced the hoarse voice? Did it go away eventually? I can't lose my voice, I always have something to say, ask anyone that knows me. LOL
Thanks again for all of the advice on this.
Terri
I am new to chemo treatments & have been taking Velcade / dex for a little over a month. I just received the Revlimid 25 mg & only had a week left in the cycle of Velcade / dex, so the doctor said take it for a week, no chemo for a week, then start everything back up on the 23rd. 3 weeks on 1 week off I believe will be how it goes.
I did look up Stevens-Johnson syndrome and it is scary looking. My rash isn't anything near that but it is driving me crazy and it is still spreading even though my last pill was 2 days ago. While googling rash / Revlimid this link came up:
http://www.drug-injury.com/druginjurycom/2008/10/revlimid-fda-says-celgene-drug-may-cause-skin-reaction---revlimid-lenalidomide---wsj-september-19-2008---by-jennifer-corb.html
and it is making me a little nervous. If I am allergic to it and can't take it, what will I take? I need to get this multiple myeloma taken care of some way.
Seems like this stuff is all scary and frustrating. I read the book about side effects etc when they mailed me my meds. Seems like it said everything and anything terrible can happen to you. It said everything except that it will cure my cancer or make me well.
I also have a hoarse sounding voice when I talk now, no pain just sound hoarse. I googled that and it looks like the dex can cause that? Has anyone experienced the hoarse voice? Did it go away eventually? I can't lose my voice, I always have something to say, ask anyone that knows me. LOL
Thanks again for all of the advice on this.
Terri
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Terri Michigan - Name: Terri Michigan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 2009
- Age at diagnosis: 45
Re: Revlimid - rash and itching - any tips?
Fortunately, or unfortunately, the drug companies are required to let you know of almost every possible side effect that you might experience with a drug. And, a lot of them are quite scary. Over time you will learn how your body reacts to the drugs we take and will also learn which side effects you need to really pay attention to for you and which ones aren't quite as necessary to report. But, until you know your body's reaction to things and what it means, letting your oncologist know what's going on is the best avenue to take.
I get hoarse for 1-2 days following my dex dose each week. Then the rest of the time I'm fine unless I'm talking for a long time at once, such as in teaching. I recently was scheduled to speak at a conference and a week later teach a continuing ed course that lasted 2 days. I asked my oncologist if I could stop the dex for a few weeks so that my voice would be robust enough to stand the rigors of teaching. He agreed to a break of a few weeks and my voice performed well. When I got back home again I resumed the dex schedule and am again experiencing the hoarsness 1-2 days a week.
I hope the rash resolves quickly for you,
Nancy in Phila
I get hoarse for 1-2 days following my dex dose each week. Then the rest of the time I'm fine unless I'm talking for a long time at once, such as in teaching. I recently was scheduled to speak at a conference and a week later teach a continuing ed course that lasted 2 days. I asked my oncologist if I could stop the dex for a few weeks so that my voice would be robust enough to stand the rigors of teaching. He agreed to a break of a few weeks and my voice performed well. When I got back home again I resumed the dex schedule and am again experiencing the hoarsness 1-2 days a week.
I hope the rash resolves quickly for you,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Revlimid - rash and itching - any tips?
Terri,
I just wanted to reply on your hoarse throat. I had a hoarse sounding voice about 8 months before being diagnosed with multiple myeloma. My wife kept saying that I should go to our family doc and have him look at it. Now, if I talk a little too much, or if I go for a long walk or ride my bike through our neighborhood, my voice starts sounding hoarse. Now, when I look back before diagnosis, could that be some sign of multiple myeloma?
I just wanted to reply on your hoarse throat. I had a hoarse sounding voice about 8 months before being diagnosed with multiple myeloma. My wife kept saying that I should go to our family doc and have him look at it. Now, if I talk a little too much, or if I go for a long walk or ride my bike through our neighborhood, my voice starts sounding hoarse. Now, when I look back before diagnosis, could that be some sign of multiple myeloma?
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Revlimid - rash and itching - any tips?
Hello Terri,
My husband has been on and off Revlimid for over 8 years. He always gets a red itchy rash. One time it was so bad that he was biopsied (negatively) for Stevens-Johnson syndrome. He also gets a rash from Pomalyst (same drug family). His oncologist has him start taking one over- the-counter Claritin tablet (5 mg) the same day he starts Revlimid. It has worked every time and no more rashes. If he forgets to take one, he starts taking at the first sign of a itchiness or rash. He takes it for the first 3-5 days of cycle. Check with your doctor first.
Good luck and I hope you find that Revlimid is a very effective drug for you.
My husband has been on and off Revlimid for over 8 years. He always gets a red itchy rash. One time it was so bad that he was biopsied (negatively) for Stevens-Johnson syndrome. He also gets a rash from Pomalyst (same drug family). His oncologist has him start taking one over- the-counter Claritin tablet (5 mg) the same day he starts Revlimid. It has worked every time and no more rashes. If he forgets to take one, he starts taking at the first sign of a itchiness or rash. He takes it for the first 3-5 days of cycle. Check with your doctor first.
Good luck and I hope you find that Revlimid is a very effective drug for you.
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