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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Pomalyst and itching - what can be done about it?

by dianaiad on Sat Jul 15, 2017 11:48 pm

My doctors have just added Pomalyst to my treatment regimen. I am now taking dexamethasone (40 mg every Tuesday) and Kyprolis twice a week for three weeks on and one week off. Plus Zometa once a month.

Because of a delivery issue, I wasn't able to begin taking Pomalyst until the day before yesterday.

I have been dealing with increased fatigue, but with the added Pomalyst, I'm now extremely tired and sleepy; so tired that simply trying to walk around the house can exhaust me to tears. Yesterday I started itching. All over. My scalp is sore and itchy, and so is my 'trunk,' front and sides, legs and arms. Once I touch them at all, my skin begins to itch violently. No visible rash, just the itch.

I read here that perhaps Claritin (loratadine) might help?

The thing is, it's the weekend; my oncologist (who is a temporary cover for my permanent one, who moved, and will be replaced by a new oncologist in a couple of weeks, and I have no clue who she is) isn't available.

Is this itching a common side effect of Pomalyst, and what is the best thing to do to get rid of it?

dianaiad
Who do you know with myeloma?: Me
When were you/they diagnosed?: Officially...March 2013
Age at diagnosis: 63

Re: Pomalyst and itching - what can be done about it?

by Hummingbird on Mon Jul 17, 2017 1:42 am

Hi,

I had rather bad itching with Revlimid. Benadryl (diphenhydramine) was the only help. Can you try it?

Best--

Hummingbird

Re: Pomalyst and itching - what can be done about it?

by dianaiad on Mon Jul 17, 2017 9:58 am

I am trying the Claritin. I think it's helping.

What I'm dealing with in regard the Pomalyst seems to be all the miserable side effects I've read others having with Revlimid, yet I didn't have. In fact, I had very mild, and temporary, side effects with Revlimid. I never knew which one would show up with each cycle, but none of them were all that problematic.

Somehow I don't think I'll be able to say that with this current set of medications. I'm just glad that I only have to deal with it for the rest of this cycle, and one more. I think. Then it's on to my second stem cell transplant.

I think.

dianaiad
Who do you know with myeloma?: Me
When were you/they diagnosed?: Officially...March 2013
Age at diagnosis: 63

Re: Pomalyst and itching - what can be done about it?

by jgilmore on Tue Jul 25, 2017 12:57 pm

I've had 2 cycles of Pomalyst, both accompanied by severe itching, and rash. The rash was on my scalp only during the first cycle, and was weeping. The doctor at the walk-in clinic prescribed a pre­scription strength steroid cream, which helped a little. It went away during the week break from Pomalyst. Second cycle, the firey rash came back to my scalp, and developed on my hands (backs and palms). My oncologist is holding off on the Pomalyst until the rash goes away completely, due to concern that it could become infected. It's still on the palms of my hands. The scalp rash is gone, but still itches.

Since I'm prone to itching from drugs like Pomalyst and Revlimid, I have hydroxyzine on hand to take when I need it. My oncologist also suggested Claritin (loratadine) in the morning, as it's longer acting. Those take the edge off.

What helps the most is to be aware when that first little itch starts, and refrain from scratching or even touching the area.

Hope this helps.

jgilmore
Name: Yanell
Who do you know with myeloma?: Me
When were you/they diagnosed?: 2009
Age at diagnosis: 57

Re: Pomalyst and itching - what can be done about it?

by dianaiad on Tue Mar 20, 2018 12:14 pm

Update on the Pomalyst:

I only had the Pomalyst for two cycles before my stem cell transplant in September, and the itching was 'deal withable." In fact, I'd almost forgotten about that.

Until last week. I was put on 25 mg of Pomalyst as maintenance; started taking it on Thursday.

The itching is back.

It's on my scalp and the front of my trunk area. There is also a very light rash on my stomach area. It's really annoying.

I'll try Claritin (loratadine), to see if that helps, but is there anything else that might help?

Other, that is, than 'don't scratch the itch?"

dianaiad
Who do you know with myeloma?: Me
When were you/they diagnosed?: Officially...March 2013
Age at diagnosis: 63

Re: Pomalyst and itching - what can be done about it?

by Victor L on Tue Mar 20, 2018 5:35 pm

I was prescribed a cream called Clarelux Gé 500 (clobetasol) some weeks ago. Certainly there has been no further itching, although it may take some time for the marks on my arms to clear up. I have been taking Pomalyst for nearly two years.

Victor L
Name: Victor L
Who do you know with myeloma?: Me
When were you/they diagnosed?: 2012
Age at diagnosis: 58

Re: Pomalyst and itching - what can be done about it?

by dianaiad on Thu Mar 22, 2018 1:34 pm

I have been told to get some 1% hydrocortisone cream, and I'm also starting to take diphenhydramine (Benadryl).

The Benadryl is working! Yay!

Well, it's starting to. The thing I need to do now is figure out how much of that I have to take to keep the itching/rash down, but not spend my entire life asleep. ;)

Or maybe I need to drink more caffeine?

I'll take any excuse to go grab a can of diet Coke.

dianaiad
Who do you know with myeloma?: Me
When were you/they diagnosed?: Officially...March 2013
Age at diagnosis: 63

Re: Pomalyst and itching - what can be done about it?

by wemery on Sat Mar 24, 2018 8:06 pm

My wife is on her ninth cycle of Pomalyst maintenance, 1 mg reduced from 2 mg because of scalp and trunk rash and itching. She has tried everything to eliminate the itching and found only temporary relief. Stopping the maintenance drugs has been the only effective relief from the rash and itching.

I'm wondering, though, what may happen with us stopping the maintenance due to the scalp rash and itching. Will we be able to return to taking the medication without the rash and itching starting.? If we stay off the medication, will the myeloma return?

Nurses have told us the rash indicates the drugs are working to stop the myeloma. We're not sure this is true, as our myeloma specialist won't confirm this.

Any thoughts are appreciated.

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: Pomalyst and itching - what can be done about it?

by Nancy Shamanna on Sun Mar 25, 2018 9:59 am

Hi Wayne,

This is just a suggestion for the scalp itch, and your wife may already have tried it. If you use 'Head & Shoulders' shampoo, that might help. I had some scalp itch when I started on Revlimid, and that worked for me.

Nancy Shamanna
Name: Nancy Shamanna
Who do you know with myeloma?: Self and others too
When were you/they diagnosed?: July 2009

Re: Pomalyst and itching - what can be done about it?

by dianaiad on Sun Mar 25, 2018 11:05 am

Hi, Nancy.

Anti-dandruff shampoo? Well, I'll try that, now that I actually have hair that requires shampooing. It's a little over an inch long now!

The Benadryl is still working, but Benadryl and asthma don't work well together, and it makes me very sleepy.

So now I'm juggling dosage. Isn't this journey fun?

dianaiad
Who do you know with myeloma?: Me
When were you/they diagnosed?: Officially...March 2013
Age at diagnosis: 63

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