My wife is experiencing what seems like a Revlimid rash on her scalp after four months maintenance of Revlimid, Ninlaro, and dexamethasone. She experienced the same rash on her scalp and body at induction of Revlimid, Velcade and dex. She began taking Claritin (loratadine) daily as that seemed to help during her induction therapy. Now not so much.
She underwent a stem cell transplant in September 2016 and has been on maintenance for four months beginning in January. The reason for the maintenance combo is she has high-risk chromosomal abnormalities of del 13, gain 1q, del 1P, and t(4:14) translocation.
Is a rash from Revlimid on the scalp a common side effect, and what can be done to relieve it?. Her multiple myeloma specialist recommended a steroid cream, but she doesn't want to do that on her hair. Also wondering if anyone has a theory about what causes Revlimid rash? I haven't really found an explanation for what causes it other than it's a side effect. Perhaps if we understood the root cause a better solution could be found to relieve the itching.
Regards to all
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9 posts
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wemery - Name: Wayne Emery
- Who do you know with myeloma?: Wife Nancy Emery
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 66
Re: Rash on the scalp, probably from Revlimid
Hi Wemery,
EJ had a rash all over his torso from Revlimid, Ninlaro and dex. We thought it was the Revlimid, but the nurse thought may be it was the Ninlaro. Claritin worked for EJ, but some docs recommend alternating Claritin with Zyrtec. You may want to give Zyrtec a try.
Good luck!
Lyn
EJ had a rash all over his torso from Revlimid, Ninlaro and dex. We thought it was the Revlimid, but the nurse thought may be it was the Ninlaro. Claritin worked for EJ, but some docs recommend alternating Claritin with Zyrtec. You may want to give Zyrtec a try.
Good luck!
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Rash on the scalp, probably from Revlimid
Christa's Mom,
Thanks, will give Zyrtec a try. I've read it works for some and not others. It seems odd the Clariton is no longer working. Can't figure that one out.
Hope all is well with you and yours.
Regards
Thanks, will give Zyrtec a try. I've read it works for some and not others. It seems odd the Clariton is no longer working. Can't figure that one out.
Hope all is well with you and yours.
Regards
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wemery - Name: Wayne Emery
- Who do you know with myeloma?: Wife Nancy Emery
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 66
Re: Rash on the scalp, probably from Revlimid
I am on my third 3-week cycle of Revlimid, Velcade and dex, but the Revlimid started 4 days behind the other two.
I developed the same scalp rash and was given a 3-day prescription for a weaker prednisone to tide me over to the next dex and that took care of it.
I take Claritin every day, and it has not come back, thank goodness.
I developed the same scalp rash and was given a 3-day prescription for a weaker prednisone to tide me over to the next dex and that took care of it.
I take Claritin every day, and it has not come back, thank goodness.
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mtsmith - Name: mtsmith
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb '16
- Age at diagnosis: 56
Re: Rash on the scalp, probably from Revlimid
Hello,
My father is also experiencing the same problem. But he has never been put on Revlimid. The doctor believes that it was due to his autologous stem cell transplant (ASCT), which compromised his immune system. The rash in the scalp was one of the system's response.
It got so bad in 2014, six months to a year after his ASCT. But as of now, though, it still persists, it has become much milder. He was prescribed a low dose methylpredisone (4 mg) by the dermatologist, and after a course of a week of treatment, the rash went away. He has received such treatments twice.
Aside, he also experiences many courses of dry cough that resembles allergy-kind of cough, not the flu kind. Only time heals. He did try Claritin (loratadine) and other allergy meds, but they did not work.
I hope this may help.
My father is also experiencing the same problem. But he has never been put on Revlimid. The doctor believes that it was due to his autologous stem cell transplant (ASCT), which compromised his immune system. The rash in the scalp was one of the system's response.
It got so bad in 2014, six months to a year after his ASCT. But as of now, though, it still persists, it has become much milder. He was prescribed a low dose methylpredisone (4 mg) by the dermatologist, and after a course of a week of treatment, the rash went away. He has received such treatments twice.
Aside, he also experiences many courses of dry cough that resembles allergy-kind of cough, not the flu kind. Only time heals. He did try Claritin (loratadine) and other allergy meds, but they did not work.
I hope this may help.
Re: Rash on the scalp, probably from Revlimid
Hello,
After diagnosis back in 2014, I was on 25 mg Revlimid 21/28 days. and 40 mg dexamethasone once per week. I was doing fine and numbers looking much better. Then after several rounds I started getting a rash around my neck and some of my scalp. It eventually spread to around 60% of my body. I usually wear a ball cap (I have way too many) and none of them fit. I even had swelling on my head due to the rash.
I didn't have a transplant, but it was the Revlimid that was the issue. Actually it was the 25 mg of Revlimid I was taking. The dose was too much for myself. I was taken of Revlimid at that point and the rash went away. Slowly went away.
A year or so later I was on another treatment plan which included Revlimid again, but at 15 mg. Never had the rash at that dosage.
Best of luck
After diagnosis back in 2014, I was on 25 mg Revlimid 21/28 days. and 40 mg dexamethasone once per week. I was doing fine and numbers looking much better. Then after several rounds I started getting a rash around my neck and some of my scalp. It eventually spread to around 60% of my body. I usually wear a ball cap (I have way too many) and none of them fit. I even had swelling on my head due to the rash.
I didn't have a transplant, but it was the Revlimid that was the issue. Actually it was the 25 mg of Revlimid I was taking. The dose was too much for myself. I was taken of Revlimid at that point and the rash went away. Slowly went away.
A year or so later I was on another treatment plan which included Revlimid again, but at 15 mg. Never had the rash at that dosage.
Best of luck
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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: Rash on the scalp, probably from Revlimid
Wayne,
Are there any other drugs that your wife is taking? During my stem cell transplant, I developed a rash on 30% of my body that made a miserable summer of 2016. None of the creams really worked, and the creams made me gain weight while I was on them.
After all the testing and re-testing for the rash, the doctors determined that it was probably due to a reaction from Bactrim (sulfamethoxazole and trimethoprim) that most patients receive after a stem cell transplant. The doctors also thought I was reacting to Valtrex (valacyclovir) after the transplant.
In December I started using both Bactrim and Valtrex again without any problems or rash, so the rash had to be connected to the melphalan and other drugs I received during the transplant, which the Bactrim and Valtrex reacted too.
Whatever the cause, I send my best for those that have a rash because I truly know the feeling.
Are there any other drugs that your wife is taking? During my stem cell transplant, I developed a rash on 30% of my body that made a miserable summer of 2016. None of the creams really worked, and the creams made me gain weight while I was on them.
After all the testing and re-testing for the rash, the doctors determined that it was probably due to a reaction from Bactrim (sulfamethoxazole and trimethoprim) that most patients receive after a stem cell transplant. The doctors also thought I was reacting to Valtrex (valacyclovir) after the transplant.
In December I started using both Bactrim and Valtrex again without any problems or rash, so the rash had to be connected to the melphalan and other drugs I received during the transplant, which the Bactrim and Valtrex reacted too.
Whatever the cause, I send my best for those that have a rash because I truly know the feeling.
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Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
Re: Rash on the scalp, probably from Revlimid
Thanks everyone for the suggestions on how to resolve the persistent rash on my wife's head. She only got temporary relief from the suggestions and the rash is really bothersome, to the point of being intolerable and unmanageable.
Met with the multiple myeloma specialist this week and he wants to determine if it is Revlimid causing the rash. She will stop the Revlimid maintenance dose for two weeks and see if the rash clears. If it clears, he wants to start her on Pomalyst, Ninlaro, and dexamethasone maintenance.
We would like to solve for the rash rather than stop Revlimid. There are only so many drugs available in the arsenal and we would like to use each to the fullest. I asked the multiple myeloma specialist if Celgene had explained the cause of the Revlimid rash to him. It seems if Celgene were to solve for the rash, more people would stay on Revlimid longer and Celgene would financially benefit from this. His response was that approximately 40% of patients taking Revlimid experience a short term rash that eventually clears. (My wife experienced this at induction) So I wrote to Celgene to see if they had interest in solving for the persistent rash. They don't. Their response was "We are not studying the etiology or causation of the rash." Personally, I wish they would. It seems to make sense to me from a business impact model.
Met with the multiple myeloma specialist this week and he wants to determine if it is Revlimid causing the rash. She will stop the Revlimid maintenance dose for two weeks and see if the rash clears. If it clears, he wants to start her on Pomalyst, Ninlaro, and dexamethasone maintenance.
We would like to solve for the rash rather than stop Revlimid. There are only so many drugs available in the arsenal and we would like to use each to the fullest. I asked the multiple myeloma specialist if Celgene had explained the cause of the Revlimid rash to him. It seems if Celgene were to solve for the rash, more people would stay on Revlimid longer and Celgene would financially benefit from this. His response was that approximately 40% of patients taking Revlimid experience a short term rash that eventually clears. (My wife experienced this at induction) So I wrote to Celgene to see if they had interest in solving for the persistent rash. They don't. Their response was "We are not studying the etiology or causation of the rash." Personally, I wish they would. It seems to make sense to me from a business impact model.
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wemery - Name: Wayne Emery
- Who do you know with myeloma?: Wife Nancy Emery
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 66
Re: Rash on the scalp, probably from Revlimid
I am on my 4th 3-week induction cycle with Revlimid 25 mg. I started it four days after starting the Velcade and dexamethasone, and developed the scalp rash after the second day. After it went down to my neck, I contacted my specialist and was prescribed a short three-day dose of a weaker steroid (prednisone) which knocked it out. I also take Claritin (loratadine) every day.
Happily it has not been back.
Good luck
Happily it has not been back.
Good luck
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mtsmith - Name: mtsmith
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Feb '16
- Age at diagnosis: 56
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