17 replies to this topic

[Cathy]

Hello,

 

Well I was DX 2010 and I know I need to do my signature line but at  I'm work can't right now I don't have my numbers here. LOL

So After 5 years I think I've been on sprycel I have had the sprycel rash for the first time for about 3-4 weeks now. Had my 3 month apt yesterday and he agreed that is what it was. But I got gotten a bad sunburn about a month ago and he said that the sun can trigger  the sprycel rash. I was surprised. So I just wanted to pass along this information.

 

Wishing everyone good (better) health!

 

Cathy

[Gail's]

I have fine rash, very dry flaky skin and itching since starting sprycel 6 months ago. I do not tan or burn when in the sun which is new for me. I don't want to burn but a little color would be nice!

[kat73]

Gail's and Cathy - The skin things with Sprycel are very mysterious, aren't they?  Trey has explained how skin gets involved as off-target hits, but I'm always amazed at how spotty (sorry, couldn't resist) the effects are.  You would think there would be one kind of rash, at a particular time, on a particular part of the body, and we'd all get it.  Nope!  My experience was of the fine bump variety - "sandpaper" - and it affected my face, upper arms, and shins, mostly.  I also had the extraordinarily dry skin thing, which would come in patches and then ultimately flake and peel.  Fortunately, nothing ever itched.  The cycle would take about 12-16 weeks and would repeat itself several times, long about Year Two on Sprycel.  And then, it stopped.  Forever?  Wow, that would be nice.  I have continued, however, to be unable to get a tan whatsoever, so it's year-round self-tanner on the arms and legs, and bronzer for the face and neck for me - just not to look cadaverous and scare the horses.

[surfdaisy76]

When I started the Sprycel  in June 2015 I had horrible dry flaky skin and a bright red face!!!  I looked like an alcoholic alligator!  That thankfully has for the most part cleared up but now I have these tiny little red dots on my arms...they don't itch and they are not that noticeable.  But on my chest I have seven or eight slightly larger bumps that itch like crazy!!!  I have to admit sometimes when I'm all alone I give in to the temptation and scratch like a dog!!!

 

I'm pretty sure it is the same piece of skin covering my entire body but yet different little nightmares in different spots!!!

 

It's always something...

[CMLParent]

Cathy,

Where is the rash located? My son was swimming yesterday and had some exposure to the sun. Today he has some tiny red bumps above his eye brows and on his cheek. Looks like a tiny raised rash. He has never had this before and I wasn't sure if it was associated with Sprycel. He has very sensitive skin.

[MarCap73]

I have developed the same tiny red bumpy rash on my upper arms.  My doctor told me it was very possibly from the Sprycel.

[Cathy]

Thanks for all your comments everyone. It is weird and people just look at me and say how can you get a new side effect from something you've been on for 5 years. I try to say side effects cycle but I think they think I'm crazy. Mine is just like a bumpy rash. And it does itch but actually its looks to be getting better a little bit. I've had this about a month or longer now. 

Dr says a allergic reaction to sprycel and if it didn't clear up we may have to talk about changing drugs. I'm not wanting to change I've already taken the first 3.

My eyes have bubbles in the white part. I know its sounds weird but its been about a year. And I did a llot of reading on Sprycel and found one place that said it can effect the conjunctiva of the eye. I've been to a couple eye doctors and they say oh its allergies but its never gone away makes my eyes water more and this just happened in the last year also. It's just on my chest and shoulders. Where I was sunburnt pretty bad.

 

Heaven knows what is happening to our bodies on these drugs. It's all pretty new so time will tell. But its so much better now so I'm very thankful for that!

 

Have a good day everyone.

[kat73]

Sorry - I just edited my post above to say that I meant NOT to scare the horses with my cadaverous white skin!

[AdamJ]

I just started getting this exact rash about a week ago (limited to upper arms) and I am also taking Sprycel. Have you had it long?  I have been worried that it might spread. I had a rash from Tasigna pretty much everywhere and I am hoping this one does not turn out to be similar.

 

I have developed the same tiny red bumpy rash on my upper arms.  My doctor told me it was very possibly from the Sprycel.

[kat73]

My Sprycel rash didn't spread.  It did affect various parts of my anatomy, but it stayed there.  And stayed. And stayed . . .

[beno]

Since starting Sprycel, I've had dry, itchy bumps on my scalp and near my knuckles as well as thick, flaky skin on my hands and wrists.

[Bb1823]

@beno, My husband has the same dry, itchy scalp on sprycel. Luckily, it's his only real side effect. He saw a dermatologist at Dana farber for relief and she put him on a few creams and shampoos that only worked for a short time. He then tried tea tree oil shampoo, and that has helped tremendously. If he goes a few days without using the shampoo, the bumps come roaring back. So it needs to be used consistently. His onc at DF also mentioned that there are a few studies he has recently consulted on that mention the skin issues with sprycel are most often seen in people who respond very well to the drug. So think of that as you are itching away : )

[beno]

I started using a dandruff shampoo and that helped a little, but I will definitely try the tea tree oil shampoo.  Thanks for the advice.

[MarCap73]

I just started getting this exact rash about a week ago (limited to upper arms) and I am also taking Sprycel. Have you had it long?  I have been worried that it might spread. I had a rash from Tasigna pretty much everywhere and I am hoping this one does not turn out to be similar.

 

 

Adam, I can't recall exactly when it emerged, but I think it was about March 2016 when I brought it up with my onc.  It hasn't spread and seems limited to my upper arm area.  

[MarCap73]

I started using a dandruff shampoo and that helped a little, but I will definitely try the tea tree oil shampoo.  Thanks for the advice.

 

I had a lot of issues with the itchy scalp for a while too and I also saw a dermatologist.  I was given a prescription for a topical steroid, which was very helpful but is not for sustained use.  I have used the tea tree oil shampoo and find it to be very helpful.  

[rcase13]

Ok I will bite, where do you get the tea tree oil shampoo? My Tasigna must be working very well. The itchiness can be painful at times.

[Bb1823]

Amazon!

[AdamJ]

Thanks MarCap73, I am relieved to hear that your rash hasn't spread after several months.  Mine is only a little itchy and will be tolerable as long as it remains in just a small area.  Hopefully my rash will behave similarly to yours. I just showed it to my onc a couple days ago. He also seemed to think it was related to the Sprycel.