Hello,
My partner took Revlimid in 2009. In the fourth cycle he got a rash over the whole body. His blood counts were very well at that time, so he stopped Revlimid an the rash disappeared.
In 2011 he took part in the MM-003 trial with pomalidomide. He again got a rash and itching, but that went away with antihistamine (Tavegil is the name in Germany; the generic name is clemastine).
In July he had to leave the pomalidomide trial, because of a new lytic lesion in his right tibia, which is treated with radiation.
Does anyone have any experience, what would happen, if he tried Revlimid again? Would he immediately get a rash, or is it possible to prevent it e.g. with giving antihistamine before?
It seems he develops a soft tissue manifestation of the multiple myeloma again, so Revlimid may be his only chance, Kyprolis is not approved in Germany by now and all trials are closed.
Thankful for any answer
Caro
Moderator's Note: To see a list of other forum discussions on the topic of rashes and itching, please go to this link. For a list of other forum discussions on the topic of Revlimid, please go to this link.
Forums
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Caro - Name: Caro
- Who do you know with myeloma?: My partner since more than 12 years
- When were you/they diagnosed?: Aug. 2007
- Age at diagnosis: 57
Re: Rash from Revlimid
Dear Caro,
Given the fact that Revlimid and pomalidomide led to rashes previously, odds are high that it would happen again with Revlimid re-challenge. However, since the rash on pomalidomide responded to anti-histamine therapy, I would think that pre-emptive use of an anti-histamine would make sense and might avert recurrence of the rash.
I do worry that a lytic lesion developed while on pomalidomide therapy, suggesting that the disease has developed resistance to this class of agents (the IMiDs). If Revlimid is tried, it would make the most sense to use it in combination therapy. Revlimid, Velcade and dexamethasone would be one consideration. Is your partner's disease resistant to Velcade or did he have trouble tolerating Velcade in the past?
Pete V.
Given the fact that Revlimid and pomalidomide led to rashes previously, odds are high that it would happen again with Revlimid re-challenge. However, since the rash on pomalidomide responded to anti-histamine therapy, I would think that pre-emptive use of an anti-histamine would make sense and might avert recurrence of the rash.
I do worry that a lytic lesion developed while on pomalidomide therapy, suggesting that the disease has developed resistance to this class of agents (the IMiDs). If Revlimid is tried, it would make the most sense to use it in combination therapy. Revlimid, Velcade and dexamethasone would be one consideration. Is your partner's disease resistant to Velcade or did he have trouble tolerating Velcade in the past?
Pete V.
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Dr. Peter Voorhees - Name: Peter Voorhees, M.D.
Beacon Medical Advisor
Re: Rash from Revlimid
Caro,
I personally have not had any issues with a rash from Revlimid as part of the CRD [carfilzomib, Revlimid, dexamethasone] trial I'm in. However, one of the other patients that I've become friends with developed a rash over most of his body. They determined it was from the Revlimid through trial and error and subsequently stopped the Revlimid. The rash went away, but as soon as they started him back on the Revlimid the rash came back. They were not able to control the rash with drugs as with your partner, so the Revlimid was eliminated from his treatment. There have been no problems with rashes for him since.
Obviously, this one case is not necessarily representative of all people on Revlimid, but it does suggest that the rash could reappear if your partner went back on Revlimid. Since Revlimid and pomalidomide are of the same class of drugs, and since the rash with pomalidomide was successfully treated, chances are the rash from the Revlimid may also be avoided with antihistamines.
I personally have not had any issues with a rash from Revlimid as part of the CRD [carfilzomib, Revlimid, dexamethasone] trial I'm in. However, one of the other patients that I've become friends with developed a rash over most of his body. They determined it was from the Revlimid through trial and error and subsequently stopped the Revlimid. The rash went away, but as soon as they started him back on the Revlimid the rash came back. They were not able to control the rash with drugs as with your partner, so the Revlimid was eliminated from his treatment. There have been no problems with rashes for him since.
Obviously, this one case is not necessarily representative of all people on Revlimid, but it does suggest that the rash could reappear if your partner went back on Revlimid. Since Revlimid and pomalidomide are of the same class of drugs, and since the rash with pomalidomide was successfully treated, chances are the rash from the Revlimid may also be avoided with antihistamines.
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Kevin J - Name: Kevin J
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
Re: Rash from Revlimid
Many thanks for your answer, Dr. Voorhees. My partner got Velcade three times. As first line therapy in combination with dex and cyclophosphamide in summer 2007, two years after in the beginning of 2010 he tolerated it well again. (First relapse).
Last year in summer it was of no use, because he developed thrombocytopenia and IgA and light chains kappa didn't decrease much.
That was before he got into the pomalidomide trial. So I fear, it would be too early to try Velcade again - our doctors in Würzburg meant that, if the multiple myeloma is resistant to one drug, it lasts two years until it makes sense to try this one again.
Have others had the same experience with Velcade ?
Caro
Last year in summer it was of no use, because he developed thrombocytopenia and IgA and light chains kappa didn't decrease much.
That was before he got into the pomalidomide trial. So I fear, it would be too early to try Velcade again - our doctors in Würzburg meant that, if the multiple myeloma is resistant to one drug, it lasts two years until it makes sense to try this one again.
Have others had the same experience with Velcade ?
Caro
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Caro - Name: Caro
- Who do you know with myeloma?: My partner since more than 12 years
- When were you/they diagnosed?: Aug. 2007
- Age at diagnosis: 57
Re: Rash from Revlimid
Dear Kevin,
I want to give you a short follow up to this topic.
Two days before starting with Revlimid, my partner took Tavegil (clemastine) three times a day. Now he is near the end of the first cycle of Revlimid and has no rash, no itching. He keeps taking Tavegil three times a day.
Maybe this would be a possibility for your friend.
I want to give you a short follow up to this topic.
Two days before starting with Revlimid, my partner took Tavegil (clemastine) three times a day. Now he is near the end of the first cycle of Revlimid and has no rash, no itching. He keeps taking Tavegil three times a day.
Maybe this would be a possibility for your friend.
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Caro - Name: Caro
- Who do you know with myeloma?: My partner since more than 12 years
- When were you/they diagnosed?: Aug. 2007
- Age at diagnosis: 57
Re: Rash from Revlimid
Caro,
Thanks very much for the update and I'm glad to hear your partner has had no issues. I will pass the information on to my friend. He only has one cycle left on his current treatment so I don't know if the information will be of immediate use, but it could of use in the future if he needs to go back on treatment.
Thanks very much for the update and I'm glad to hear your partner has had no issues. I will pass the information on to my friend. He only has one cycle left on his current treatment so I don't know if the information will be of immediate use, but it could of use in the future if he needs to go back on treatment.
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Kevin J - Name: Kevin J
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
Re: Rash from Revlimid
My husband was on Revlimid prior to his stem cell transplant in September 2012. He was put back on it as a maintenance therapy. He has been on it for 4 months now and has developed itching and a terrible rash on both legs and arms. We are waiting to hear back from the doctor. Now I'm he doesnt have to stop the Revlimid since it has been working well for him.
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mrsdoc
Re: Rash from Revlimid
I also stopped Revlimid after 2 months maintenance. My rash covered most of my torso, legs on and above the knees and arms above the hands.
After one week off the Revlimid and taking prednisone, the stinging stopped and the rash stopped spreading. My main concern is the effect on the length of my remission.
After one week off the Revlimid and taking prednisone, the stinging stopped and the rash stopped spreading. My main concern is the effect on the length of my remission.
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Ronk
Re: Rash from Revlimid
I have been taking Revlimid, Velcade and dex since September, and developed an all-over rash due to Revlimid on 25 mg. Dana Farber Cancer Institute in Boston drives the bus for me, and they recommended alternating months of Zyrtec (cetirizine) and Allegra (fexofenadine) while on Revlimid. But the rash came back. So they decreased my Revlimid dose to 15 mg. I continue taking either Zyrtec or Allegra. The rash has not come back.
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Tracy J - Name: Tracy Jalbuena
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2014
- Age at diagnosis: 42
Re: Rash from Revlimid
I was on maintenance with 10mg of Revlimid for 21 out of 28 days. Developed a rash on my elbows. Then around my belt line. Doctor added prednisone. That worked for a while. Then rash came back. Reduced Revlimid to every Monday, Wednesday and Friday for 3 weeks per month. Rash didn't subside. Doctor thought it may have been the stopping / starting of Revlimid after the 3rd week. Now I take Revlimid 3 days a week as before with 10mg of prednisone. No week off. 12 pills per month. No more rash.
I was told the rash could become very serious. Something about the skin rubbing off.
I was told the rash could become very serious. Something about the skin rubbing off.
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Stan W. - Name: Stan
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: SMM-April 2012
- Age at diagnosis: 58
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