I posted previously about a rash that I had during my last two cycles of Revlimid / dex (link to discussion). My treatment is 25 mg of Revlimid, 21 days on with 7 off, and dex, once per week at 40 mg. Last month, I had a rash that lasted about a week in the middle of my cycle. This month it started at the last two days of the cycle. That was about 11 days ago. The rash is just about gone with some redness that is also slowly going away. I also had swelling at my legs above the knee; still swollen but not like before.
So the reason I am starting a new post is because my oncologist believes that the Revlimid is the cause of the rash. He pointed out that my recent labs show my EOS at 34 (reference is 0 to 5). I looked at the lab the month before and it was worse at 35.5. All my labs since I started this treatment show some increase every month, but a huge increase in the last two. My oncologist is going to consult with my harvest / transplant doctor and go from there. In the meantime, he stopped the next cycle of Revlimid; I'm still going to take the dex.
I asked him if stopping the Revlimid for one cycle then starting it again at a lower dose would help. He didn't think it would matter, as he feels my body is rejecting the Revlimid.
Has anyone had this happen to them? If so, was the Revlimid stopped, then started again at a lower dose?
He did mention that he didn't want to chance Stevens-Johnson syndrome. Looking at the symptoms for Stevens-Johnson, I had the rash with reddening skin, also swelling and now some skin is shedding from the rash area. I take my BP, temperature and OS daily. It has been normal the whole time.
I'm really upset that I can't take the Revlimid, as it was working so well.
Has anyone else had something like this happen to them and, if so, what did you do?
Not sure what drug is next ...
Castaway
Forums
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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: Oncologist stopped my Revlimid due to rash - options?
They started my husband on 15 mg 2 years ago and he got a rash. They lowered his dose to 5 mg and no more rash.
His M spike is what they have always focused on. Before his stem cell transplant, she said it would never be 0, but it did go to 0, and has stayed there the past 2 years until just now. It is 0.02 so she's upping his dose to 10 mg to see if that will either knock it back to 0 ... or at least keep it from going up any further.
As far as we know, all his other blood work counts have been fine. She has never said anything about them other than they all look great.
His M spike is what they have always focused on. Before his stem cell transplant, she said it would never be 0, but it did go to 0, and has stayed there the past 2 years until just now. It is 0.02 so she's upping his dose to 10 mg to see if that will either knock it back to 0 ... or at least keep it from going up any further.
As far as we know, all his other blood work counts have been fine. She has never said anything about them other than they all look great.
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Anonymous
Re: Oncologist stopped my Revlimid due to rash - options?
I, too, had the rash. I called it the "Revlimid Rash". It usually started on my scalp and then down my forehead. It went away after the 4th pill.
But one time, it got so bad. Behind my ears, under my breasts, were so raw that the skin burned. I went to a dermatologist and found out it was a yeast infection. It had taken advantage of the weakened immune system.
The dermatologist put me on fluocinonide ointment USP 0.05% for the first 2 weeks, and then desonide ointment 0.05% for 2 weeks. After 2 days it was clearing up, and after 5 days completely gone! But I kept the ointment going to make sure it was completely healed.
Now if I get that kind of rash again, I automatically go at it again with the same ointments. I hope this helps. But I was able to continue the Revlimid at a lower dose of 15 mg.
But one time, it got so bad. Behind my ears, under my breasts, were so raw that the skin burned. I went to a dermatologist and found out it was a yeast infection. It had taken advantage of the weakened immune system.
The dermatologist put me on fluocinonide ointment USP 0.05% for the first 2 weeks, and then desonide ointment 0.05% for 2 weeks. After 2 days it was clearing up, and after 5 days completely gone! But I kept the ointment going to make sure it was completely healed.
Now if I get that kind of rash again, I automatically go at it again with the same ointments. I hope this helps. But I was able to continue the Revlimid at a lower dose of 15 mg.
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Mary Degenkolb - Name: Mary Degenkolb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2011
- Age at diagnosis: 54
Re: Oncologist stopped my Revlimid due to rash - options?
Many doctors will prescribe 3 weeks on Revlimid and 1 week off, just for this reason. I haven't yet developed a rash, but I have an itch, pretty much all over.
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Pusser
Re: Oncologist stopped my Revlimid due to rash - options?
Interesting. I developed a pretty good case ... not of a 'rash,' per se, but hives, during the last week of my last cycle.
I did a bunch of research (incuding a lot of posts here) and found out that many people use Claritin (loratadine) and/or Benadryl (diphenhydramine) to combat it.
Well, since it's coming up for fall and one of my nastier hayfever seasons anyway, I tried taking Claritin every day, beginning on my 'week off.'
Sure enough, I got a couple of hives, but just a couple, towards the end of the second week of the cycle. I have, at this point, absolutely no real idea if it's 'Revlimid rash' or not, but nothing ELSE gives me hives. So maybe, and just perhaps, the Claritin is keeping it at bay.
Well, it's keeping the hay fever at bay, anyway, so I'll take that.
Either way I'm off next week, so I guess I'll find out for sure in October. Or not.
I did a bunch of research (incuding a lot of posts here) and found out that many people use Claritin (loratadine) and/or Benadryl (diphenhydramine) to combat it.
Well, since it's coming up for fall and one of my nastier hayfever seasons anyway, I tried taking Claritin every day, beginning on my 'week off.'
Sure enough, I got a couple of hives, but just a couple, towards the end of the second week of the cycle. I have, at this point, absolutely no real idea if it's 'Revlimid rash' or not, but nothing ELSE gives me hives. So maybe, and just perhaps, the Claritin is keeping it at bay.
Well, it's keeping the hay fever at bay, anyway, so I'll take that.
Either way I'm off next week, so I guess I'll find out for sure in October. Or not.
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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: Oncologist stopped my Revlimid due to rash - options?
Just want to say thank you for all the replies.
It's really disappointing that for almost 6 months I had no issues, then the rash forces my oncologist to stop treatment. Thinking back to my first episode with the rash, I was working in my yard and replacing plants to more drought tolerant ones. Used a lot of organic planting soil. This last time I had the rash, I also was working in my back yard doing the same thing, only planting some bushes and a few trees, again using fertilizer and the organic soil / mulch.
I explained to my oncologist that I used those materials, but he didn't think that was the issue. Plus I have swelling at my legs and now my ankles.
I also had the rash start at my scalp and neckline then down my chest and shoulders -- kind of like a sunburn. I also had swelling at the back of my neck. My last Revlimid tablet was taken 10 days ago and my skin is still red and some rash. Also, my neck has some swelling. My oncologist said these symptoms could take weeks to go away.
I contacted the hospital where I hope to get a stem cell harvest soon and the lead doctor there is going to call me back. I just don't want to lose the progress that I have achieved towards getting the cell harvest done.
It's really disappointing that for almost 6 months I had no issues, then the rash forces my oncologist to stop treatment. Thinking back to my first episode with the rash, I was working in my yard and replacing plants to more drought tolerant ones. Used a lot of organic planting soil. This last time I had the rash, I also was working in my back yard doing the same thing, only planting some bushes and a few trees, again using fertilizer and the organic soil / mulch.
I explained to my oncologist that I used those materials, but he didn't think that was the issue. Plus I have swelling at my legs and now my ankles.
I also had the rash start at my scalp and neckline then down my chest and shoulders -- kind of like a sunburn. I also had swelling at the back of my neck. My last Revlimid tablet was taken 10 days ago and my skin is still red and some rash. Also, my neck has some swelling. My oncologist said these symptoms could take weeks to go away.
I contacted the hospital where I hope to get a stem cell harvest soon and the lead doctor there is going to call me back. I just don't want to lose the progress that I have achieved towards getting the cell harvest done.
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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: Oncologist stopped my Revlimid due to rash - options?
Hi George
I posted last time, not sure if you saw it, but once I stopped the Revlimid, my rash went away. Mine was just visual, meaning no itching. Luckily, I just happened to be near the end of my initial therapy, so stopping the Revlimid was already planned.
I'm on maintenance now and chose Velcade instead of Revlimid partially because I feared the rash coming back.
I posted last time, not sure if you saw it, but once I stopped the Revlimid, my rash went away. Mine was just visual, meaning no itching. Luckily, I just happened to be near the end of my initial therapy, so stopping the Revlimid was already planned.
I'm on maintenance now and chose Velcade instead of Revlimid partially because I feared the rash coming back.
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RayGunter - Name: Ray Gunter
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Sept 2011
- Age at diagnosis: 38
Re: Oncologist stopped my Revlimid due to rash - options?
A rash is a common side effect from Revlimid. It is usually not serious, but can rarely be very dangerous. It is not typical to develop elevated eosinophils with Revlimid. High eosinophilia can represent a true allergic reaction. You would want to review all of your medications and certainly see if you are on anything new that could cause an elevation of eosinophils.
In a situation like this, we would hold Revlimid until the rash improves and re-start at a lower dose. That typically solves the problem.
Best wishes,
Jlk
In a situation like this, we would hold Revlimid until the rash improves and re-start at a lower dose. That typically solves the problem.
Best wishes,
Jlk
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Dr. Jonathan Kaufman - Name: Jonathan Kaufman, M.D.
Beacon Medical Advisor
Re: Oncologist stopped my Revlimid due to rash - options?
Dr. Kaufman,
Thank you so much for the reply. I have kept a file for everything related to my multiple myeloma since first diagnosis. I just looked at my labs since January. Before starting the Revlimid / dex treatments in February, I had an initial lab that shows my EOS at 4.4. then each month reads like this:
March 7.0
April 17.8
May no report
June 9.0
July 16.0
August 35.5
Sept 34.0
I did have a slight rash the first part of April, but nothing again until August, which lasted about a week. There has never been any itching with the rash. This last rash that I just had is also now gone, but it was accompanied by the skin being very hot, to a point that it was like a sunburn causing the skin to swell at my stomach area (now shedding skin ).
After that subsided and the rash went away, I had swelling at my legs above the knee. That also went away and I now have swelling at the knee down to my calves, ankles and feet. That seems to be slow to subside, but is going away also.
The last two months I have been doing a lot of yard work, planting several bushes and trees. I used several organic soils and fertilizers. I do get hay fever. No new drugs, just using Allegra (fexofenadine) for the rash. Not sure if the yard work or plants could have caused this.
I am concerned about the swelling. My Dad was a farmer and grew hay for a dairy when I was very young. I could not even get close to dry hay or my eyes would water and close, then I would get a terrible rash.
I have an appointment with my oncologist tomorrow. I don't really want to start any new treatments until this situation is resolved first.
Again, Thank You So Much !!
George
Thank you so much for the reply. I have kept a file for everything related to my multiple myeloma since first diagnosis. I just looked at my labs since January. Before starting the Revlimid / dex treatments in February, I had an initial lab that shows my EOS at 4.4. then each month reads like this:
March 7.0
April 17.8
May no report
June 9.0
July 16.0
August 35.5
Sept 34.0
I did have a slight rash the first part of April, but nothing again until August, which lasted about a week. There has never been any itching with the rash. This last rash that I just had is also now gone, but it was accompanied by the skin being very hot, to a point that it was like a sunburn causing the skin to swell at my stomach area (now shedding skin ).
After that subsided and the rash went away, I had swelling at my legs above the knee. That also went away and I now have swelling at the knee down to my calves, ankles and feet. That seems to be slow to subside, but is going away also.
The last two months I have been doing a lot of yard work, planting several bushes and trees. I used several organic soils and fertilizers. I do get hay fever. No new drugs, just using Allegra (fexofenadine) for the rash. Not sure if the yard work or plants could have caused this.
I am concerned about the swelling. My Dad was a farmer and grew hay for a dairy when I was very young. I could not even get close to dry hay or my eyes would water and close, then I would get a terrible rash.
I have an appointment with my oncologist tomorrow. I don't really want to start any new treatments until this situation is resolved first.
Again, Thank You So Much !!
George
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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
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