Revlimid side effects

Hello,

I have been taking Revlimid for the past 4 months.  The first two months the Revlimid was combined with Dex but as it didn't agree with me, the Dex was stopped.

A couple of weeks ago, I noticed I had a slight rash developing.  Just about 6 whiteheaded spots on each arm, leg and chest, these irrate (itch).  I have now noticed that my skin has become very rough in places (rather like if you have been sunburnt before the skin peels!). It's more at the top of both arms and on one side of my chest and neck. 

My doctor is not sure if the Revlimid has caused this and, to be on the safe side, has decided to stop the Revlimid for a month.

Has anybody else had the same thing happened to them?

Phyl

 

 

On 9/20/2007 Summerday wrote:

Hello,

I have been taking Revlimid for the past 4 months.  The first two months the Revlimid was combined with Dex but as it didn't agree with me, the Dex was stopped.

A couple of weeks ago, I noticed I had a slight rash developing.  Just about 6 whiteheaded spots on each arm, leg and chest, these irrate (itch).  I have now noticed that my skin has become very rough in places (rather like if you have been sunburnt before the skin peels!). It's more at the top of both arms and on one side of my chest and neck. 

My doctor is not sure if the Revlimid has caused this and, to be on the safe side, has decided to stop the Revlimid for a month.

Has anybody else had the same thing happened to them?

Phyl

 

My dad is on Revlimid and although he has not developed a rash one of the milder side effects of the drug is a rash so your reaction is most likely due to the Revlimid.  I think your doctor did the right thing stopping it for a period of time until your rash resolves.  My dad has had to stop it on two occasions - he's been off of it for four weeks now and will be restarting again in a week.  It's not uncommon to have to take breaks from this medication.  Even with the multitude of side effects, this medication no doubt works.  My dad is 81 - he has had MM for at least 8 years and since taking Revlimid his body is producing healthy platelets - he went from 23,000 to 100,000 during the break period.  That's really miraculous.  Also, his proteins are almost back to normal.  Keep the faith - my thoughts and prayers are with you.

My husband started Revlimid and Dex a week ago.  He slept almost all day and just started feeling worse.   I took him to the doctor last Friday and he stopped the Revlimid and said to come back in a week.  He told him to go ahead with The Dex on the scheduled day which would be Monday (today).  Saturday when he woke up he had a rash all over his arms and lower back area.  He was feeling terrible.   I called the Doctor on Call and he said that if he developed a fever or chills to call him but otherwise give him Benydrill (misspelled) He slept the whole day only being up for about 3 hours.   At 10:30 that night he was having pain spasms and was running 103.4 fever and chilling.  I called the Doctor on Call and he said it was the Revlimid and to give him Tylenol for the fever and watch for dehitration.   The fever broke right away but he still has a rash. He isn't running fever anymore but I was so scared and the doctors just keep telling me that it is the disease and keep him comfortable.  He had a X-ray survey Friday to make sure that nothing is hiding anywhere.  His blood work is pretty good from what they are saying.  The doctor we are going to now because it is closer to our home is saying that he would not have started treatment yet because his numbers were not bad enough and the doctor that did the transplant wants him to start treatment now.  I am soooooooooooooooo confused about all this.  The doctor that wanted to wait on treatment is afraid for the quality of life issue.   WHAT QUALITY OF LIFE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!   Any replies would be welcome.  Connie

Thank you very much for taking the trouble to reply.

 I'm really glad to hear that the Revlimid has helped your dad.  It's also very encouraging to hear that he has had MM for 8 years.  I was originally told that most people don't survive very long with MM but I have certainly been encouraged by some of the letters I have read on this website, about people surviving for much longer, it has given me a lot of hope.  I will certainly give the Revlimid another try next month.

God Bless

Phyl

Hi Connie,

I'm afraid MM does make you feel very tired at times.  I've found that when I feel tired the best thing is not to fight it but really try to relax and sleep. 

It sounds to me as if the Revlimid is not suiting your husband at the moment.  It seens to affect people in different ways.  When taken with the Dex, it caused me to haemorrhage very badly. I certainly hope that your husband will be feeling better very soon, it is obviously very worrying for you. I know how worried my husband and family are when I am going through a bad patch.   Phyl

 

Hi there,  My dad is just going to start taking revlimid.  I am praying that this will help him with his myelofibrosis.  He has been on thatlidimine.  His RBC stays at around 9.0-9.8.  He is tired all of the time and he has lost 60 lbs.  He is 64 and was diagnosed last November.  I really want this new drug to help him so bad.   Thanks!!  DM

My mother was on Revlimid for 30 days.  She responded very well with this treatment, the only problem was she got a blood clot in her knee that was very bad.  she in turn had to go on Lovenox injections to treat the clot.  she also got cellulitis which is a rash all around the area of the clot.

 Unfortunately, for insurance purposes she was cut off from the revlimid which i am convinced would've helped her.  Her doctor is now attempting a study w/ revlimid/velcade combo which I'm hoping my mom gets into.

She has tried everything from VAD, thalidomide, dexamethasone, velcade and revlimid.  The thalidomide worked great but she had terrible side effects that affected her mental health.

 

On 10/30/2007 MotherWMyeloma wrote:

My mother was on Revlimid for 30 days.  She responded very well with this treatment, the only problem was she got a blood clot in her knee that was very bad.  she in turn had to go on Lovenox injections to treat the clot.  she also got cellulitis which is a rash all around the area of the clot.

 Unfortunately, for insurance purposes she was cut off from the revlimid which i am convinced would've helped her.  Her doctor is now attempting a study w/ revlimid/velcade combo which I'm hoping my mom gets into.

She has tried everything from VAD, thalidomide, dexamethasone, velcade and revlimid.  The thalidomide worked great but she had terrible side effects that affected her mental health.

Hi!  How is your mother?  My dad is still hanging in there---seems worse lately and I hope he comes throught this one.  he is still on the drugs--his problem now is that he has sever diarhea---all day long!!! 

Deannamarie

On Sep 24, 2007 12:00 AM connie1 wrote:

My husband started Revlimid and Dex a week ago.  He slept almost all day and just started feeling worse.   I took him to the doctor last Friday and he stopped the Revlimid and said to come back in a week.  He told him to go ahead with The Dex on the scheduled day which would be Monday (today).  Saturday when he woke up he had a rash all over his arms and lower back area.  He was feeling terrible.   I called the Doctor on Call and he said that if he developed a fever or chills to call him but otherwise give him Benydrill (misspelled) He slept the whole day only being up for about 3 hours.   At 10:30 that night he was having pain spasms and was running 103.4 fever and chilling.  I called the Doctor on Call and he said it was the Revlimid and to give him Tylenol for the fever and watch for dehitration.   The fever broke right away but he still has a rash. He isn't running fever anymore but I was so scared and the doctors just keep telling me that it is the disease and keep him comfortable.  He had a X-ray survey Friday to make sure that nothing is hiding anywhere.  His blood work is pretty good from what they are saying.  The doctor we are going to now because it is closer to our home is saying that he would not have started treatment yet because his numbers were not bad enough and the doctor that did the transplant wants him to start treatment now.  I am soooooooooooooooo confused about all this.  The doctor that wanted to wait on treatment is afraid for the quality of life issue.   WHAT QUALITY OF LIFE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!   Any replies would be welcome.  Connie

To connie1,

I realize your e-mail is over two years old, but I hope this information will help someone who reads it.  I was diagnosed with multiple myeloma in April 1999 when I was 34 years old.  My M-spike was 9.0!  I had five rounds of the VAD (Vinscristine, Adreomyacin with Decadron) that I received five days straight once a month for five months.  (Please pardon my spelling on the chemo drugs.)  I then had a horrible infection in my catheter and had it removed from chest and was treated with antibiotics for about two months before my stem cell transplant that took my M-spike from 4.0 to .9.   Almost three years later, I was treated with Thalidomide in 2003 from February through November.  I had excellent results and my M-spike went to 0 after relapsing to 4.0.  I stopped taking Thalidomide and Zometa for almost 4 years until 2008 when a tumor was found on my spine and I started Revlimid and Decadron.  My M-spike was up to 1.2 but was reduced to .1 with Revlimid.  I did experience severe leg and foot cramps taking Revlimid.  I stopped treatment about three months ago after experiencing severe hand cramps.  Whenever I had cramps, however, I drank at least one ounce of Tahitian Noni juice to relieve the pain.  It comes from the noni fruit and it is the reason that I haven't taken any pills for neuropathy for almost three years!  (I was taking 90 pills a month a few years ago.)  I also highly recommend a dietary change.  I make fresh vegetable juice almost every day.  I don't eat red meat, pork or drink sodas.  I have also been drinking barley grass juice for over 5 years.  My health numbers are excellent.  My HDL (good cholesterol) is 97!  I have never taken any medication for other ailments such as high blood pressure, high cholesterol, etc.  I highly recommend that you check out Hallelujah Acres or hacres.com to learn about healthy eating to flood your body with enzymes and self healing!  It has helped me tremendously.  Currently, I am not on any medication and I feel great 10 years and 7 months after my diagnosis.