Hi Dianaiad,
I think you are doing a stellar job of trying to keep all of this in perspective, and haven't lost your sense of humour! I thought the anti-dandruff shampoo might work for Pomalyst (pomalidomide) side effects since it sometimes works for Revlimid (lenalidomide) itching. Those two drugs are in the same family of immunomodulatory agents (thalidomide, lenalidomide, pomalidomide). That was a tip I was given long ago, and it just came back to mind, and I hope it would work for you!
Forums
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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?
My husband had a stem cell transplant in 2016. He had 4 months of Kyprolis starting after his 100 day check up for consolidation. He was then put on Revlimid 10 mg maintenance. Then this past fall he had a rash develop on his legs and trunk. His Revlimid was never stopped and the rash was treated with a steroid cream and clindamycin. Cleared up.
Fast forward 4 months later, rash back with a vengeance. Trunk, arms, legs, you name it. Revlimid stopped and my husband was sent to a dermatologist who did a biopsy. Clobetasol cream and Claritin (loratadine; yes, the allergy medication) cleared it up. Biopsy confirmed the medication reaction.
Once the rash was completely gone, they restarted his Revlimid with him taking a Claritin for the first week of his cycle. So far so good, no rash.
Did they let the rash clear before starting another treatment regimen?
Check with your oncologist about the Claritin. Could not hurt.
Good luck.
Dale
Fast forward 4 months later, rash back with a vengeance. Trunk, arms, legs, you name it. Revlimid stopped and my husband was sent to a dermatologist who did a biopsy. Clobetasol cream and Claritin (loratadine; yes, the allergy medication) cleared it up. Biopsy confirmed the medication reaction.
Once the rash was completely gone, they restarted his Revlimid with him taking a Claritin for the first week of his cycle. So far so good, no rash.
Did they let the rash clear before starting another treatment regimen?
Check with your oncologist about the Claritin. Could not hurt.
Good luck.
Dale
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DaleJC28117 - Name: Dale
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 2016
- Age at diagnosis: 57
Re: Pomalyst and itching - what can be done about it?
Hello,
By chance, have you noticed a pattern when you take the Pomalyst and the “itch” you experience? For example, when my spouse was taking maintenance Revlimid, we noticed that on one particular day of the 21-day cycle, hives would appear on the face and neck. As soon as the hives appeared, they were gone by the next day.
We took pictures and made note of the date. After the second time, we advised the oncologist. My spouse was prescribed methylprednisolone to mitigate the hives when it happened. Hence, a pattern was noted and documented.
As has already been mentioned, 10 mg loratadine (Claritin) has worked for my spouse. Not only while taking Pomalyst, but, previously, while on Revlimid. It is taken even on the off-week to ensure the integrity of it in the body. There are many different antihistamines (cetirizine, chlorpheniramine, clemastine, and fexofenadine, to name a few others), and maybe you have not yet found the one which works best for you. The diphenhydramine (Benadryl) is known to cause drowsiness, as you mention. Hence you may want to look at alternative antihistamines.
To diminish the “itch” issue, you may want to try taking a baking soda bath or oatmeal bath. Each of these has properties which help with “itch.” Also, best to blot the skin dry with a towel, rather than wipe the skin, after the soaking bath. Wiping is more irritable to the skin.
Best,
ZZ
By chance, have you noticed a pattern when you take the Pomalyst and the “itch” you experience? For example, when my spouse was taking maintenance Revlimid, we noticed that on one particular day of the 21-day cycle, hives would appear on the face and neck. As soon as the hives appeared, they were gone by the next day.
We took pictures and made note of the date. After the second time, we advised the oncologist. My spouse was prescribed methylprednisolone to mitigate the hives when it happened. Hence, a pattern was noted and documented.
As has already been mentioned, 10 mg loratadine (Claritin) has worked for my spouse. Not only while taking Pomalyst, but, previously, while on Revlimid. It is taken even on the off-week to ensure the integrity of it in the body. There are many different antihistamines (cetirizine, chlorpheniramine, clemastine, and fexofenadine, to name a few others), and maybe you have not yet found the one which works best for you. The diphenhydramine (Benadryl) is known to cause drowsiness, as you mention. Hence you may want to look at alternative antihistamines.
To diminish the “itch” issue, you may want to try taking a baking soda bath or oatmeal bath. Each of these has properties which help with “itch.” Also, best to blot the skin dry with a towel, rather than wipe the skin, after the soaking bath. Wiping is more irritable to the skin.
Best,
ZZ
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ZippyZelda - Name: ZippyZelda
- Who do you know with myeloma?: Spouse
Re: Pomalyst and itching - what can be done about it?
My wife has tried all the above recommended therapies for Revlimid, Ninlaro, and Pomalyst rash / itch, to no avail.
As a last effort, my wife is trying dapsone before discontinuing maintenance because of the rash / itch side effect of Revlimid, Ninlaro, and Pomalyst.
Not for the faint of heart, Dapsone seems to help my wife with the Pomalyst rash / itch. During her first four Revlimid maintenance cycles, while she was on dapsone antibiotic after her stem cell transplant, she had no rash from Revlimid maintenance 10 mg. Twelve days after being taken off the dapsone is when the rash / itch began. She discontinued Revlimid and tried Ninlaro, and Pomalyst maintenance, both which also caused rash / itch on her scalp, back, and trunk (same areas every time). The myeloma specialist agreed to retry dapsone and so far it has given some relief to the rash / itch.
She is in the process of trying to adjust the dosage for maximum effect with minimal side effects. 100 mg daily was too much and caused severe fatigue but eliminated the rash / itch. 50 mg is too little and did not clear the rash / itch entirely. Trying alternating 50 mg - 75 mg every other day. Seems to be working so far.
Regards to all.
As a last effort, my wife is trying dapsone before discontinuing maintenance because of the rash / itch side effect of Revlimid, Ninlaro, and Pomalyst.
Not for the faint of heart, Dapsone seems to help my wife with the Pomalyst rash / itch. During her first four Revlimid maintenance cycles, while she was on dapsone antibiotic after her stem cell transplant, she had no rash from Revlimid maintenance 10 mg. Twelve days after being taken off the dapsone is when the rash / itch began. She discontinued Revlimid and tried Ninlaro, and Pomalyst maintenance, both which also caused rash / itch on her scalp, back, and trunk (same areas every time). The myeloma specialist agreed to retry dapsone and so far it has given some relief to the rash / itch.
She is in the process of trying to adjust the dosage for maximum effect with minimal side effects. 100 mg daily was too much and caused severe fatigue but eliminated the rash / itch. 50 mg is too little and did not clear the rash / itch entirely. Trying alternating 50 mg - 75 mg every other day. Seems to be working so far.
Regards to all.
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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
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