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Itching in ... sensitive places?

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Sorry for the indelicate post here, but I'm really going out of my mind.  I'm 8 months into my CML diagnosis, everything is going great with Tasigna EXCEPT for the last 3-4 months or so I have persistent, really bad itching on my testicles/pubic area and anus.  Been using medicated moisturizing creams and they help dial down the itch for about 60-90 minutes but it always returns.  Benadryl does nothing.  My doctor insists it must just be some form of allergic reaction to the Tasigna (he said from the beginning that rash/itching was to be expected) and has prescribed Gabapentin but I'm hesitant to take it because its supposed to knock you out and I can't be drowsy for work.  At this point though I'm about to give in and try it.

Anyhow, just wondering if anyone else on Tasigna or similar TKIs has had this problem and if so, what they ended up doing about it.   I know for sure that Tasigna is giving me generalized skin issues - my skin is much drier than normal, and I'm getting spots on my face and scalp which is very unusual for me.  But all of that I can deal with - its the constant "raw butt" and itchy testicles that are driving me mad.  Its so bad I can't even exercise or walk long distances without my rear end flaring up like I've just wiped it with sandpaper.

HELP!

This must be really distressing for you.... I think you might benefit from a short course of hydrocortisone (steroids) cream applied topically or even a course of steroids taken internally. Itching skin is a side effect of almost all TKIs but I think nilotinib (tasigna) may be the one that this happens more frequently. If steroid support does not help then you need to think of changing your therapy to a different TKI. We are all individuals and side effect profiles of each TKI do differ. 

Hopefully your doctor will listen.

Sandy

Hi there, that sounds really nasty and difficult to deal with on an everyday basis.

Have you tried using something like Sudocrem? It's a very thick emollient, often used for nappy rash. I often get dry skin on my hands and arms so use Diprobase which is another good emollient but Sudocrem is certainly thicker and I think more likely to deal with the "moving parts" around your groin. It won't cure anything I don't think, but it may make the day a little easier. Sandy's suggestion of hydrocortisone is probably a very good one too.

David.

Unfortunately anal itching etc is one of the side effect of tki s and have been there before especially the issue of toiletting -we have a bidet at home and it is great for hygiene in that area of the body.Otherwise what about frequent showering and a pat down with a soft towel but avoid soaps that irritate.You could try a none cortisone cream such as" Hopes relief-intensive dry skin rescue" which is excellent for Eczema, Psoriasis and Dermatitis;it has calendula,aloe vera and manuka honey amongst others in it.It is made in Australia but available in UK in health food shops or try Amazon but is quite expensive.If you go for a cortisone cream Betnovate cream may be worth a try-used to use it in the tropics for heat rash and chaffing in the nether parts.As for Gabapentin it is the last resort as a pain killer for spinal pain and of course for epilepsy-my wife took 3000 mg daily and it made her a zombie.I would not go down that road.

Best wishes

John

I had these problems on my anus. I was getting crazy. I used several products recommended by doctors and nothing worked. One day, after taking a shower, I decided to use a cream that I use for the arms, legs, belly, to treat skin problems caused by Nilotinib. I used this cream on the anus, and it worked. After 24 hours, the itching began to disappear. Sometimes it comes back, but I always apply this cream when the problem appears. The cream is called Diprosone, in Portugal. http://diprosone.fr/img/dipro1.jpg

Hi Adolfo,

I am not surprised that the cream you used has helped with the itching you have experienced as a side effect of taking nilotinib as it is a (synthetic adrenocorticosteroid for dermatologic use. The adrenal glands produce steroid hormones, but output may be affected by prolonged stress or side effects of some drug therapies etc.

However, you should inform your doctor that you are using it on your anus as well as on other areas of your body, and that it has provided you with relief. There are other such steroid creams that may be better in your case but your doctor can advise on this.  

Diprosone 0.05% (according to information in the links below) is a medium potency corticosteroid and as long as you do not use this cream over the longer term or use too much over a wider area of tissue (which can risk suppressing the adrenal glands after prolonged use) you may solve the problem with this side effect of nilotinib. It may be that you would be better to use a lower potency corticosteroid cream so you can be confident in occasional use over the longer term.

Best wishes,

Sandy

 

Diprosone cream 0.05% Patient Information Leaflet here: https://www.medicines.org.uk/emc/medicine/19937 which describe this cream as a topical steroid... see below:

Diprosone cream contains the active ingredient betamethasone dipropionate. Betamethasone dipropionate belongs to a group of medicines called topical corticosteroids which are used on the surface of the skin to reduce the redness and itchiness caused by certain skin problems.

Also see more detailed information here: https://www.drugs.com/drp/diprosone-cream-usp-0-05.html

 

 

Sprycml, I had exactly the same problem, same exact areas. I am on 140mg Sprycel.

For, ahem, the front:
One thing that helped me a lot was using 100% cotton underwear; I believe because the itch is a consequence of ipersensitive skin.
I even devised a system when I put a napkin as "cotton insulation", so to speak.
Now that things are better I am back on normal underwear.

For the back:
For extreme itching cases, which some days would really drive me out of my mind, I used topic lidocaine, and it really helped.
Mind, I only used it a couple of times, for emergencies. I mean, I couldn't go to a friend parties and, well, spend the evening scratching ...
Another thing I started paying more attention to is fiber intake; the more, the merrier :)  It's a slow process, so don't expect to eat whole granola and see it improve in a few days.

At any rate, after a few months both problems gradually subsided. I would not say the areas are 100% okay, but almost.

Hope this helps!

Dave

Thanks everyone!  Glad to know I'm not the only one.   Will definitely be trying some of these remedies.