9 replies to this topic

[August1]

Hi everyone,

So I've been on Sprycel about three months now.  Since starting Sprycel I noticed a rash developing on my stomach. Mainly it looks like small reddish bumps of varying sizes. Some of the spots look a little like acne. I also get the red face, etc., but I'm more concerned about the rash itself. It seems to be slowly spreading over the course of three months and I now have a little bit on chest as well. It's noticeable but does not really itch much.

So I'm worried as this doesn't seem to be the "typical" rash that gets reported with Sprycel (which comes and goes and itches).

My last blood work and PCR were good and my oncologist said he didn't think it was leukemia cutis but more likely a drug reaction. I just can't seem to find much supporting that this is a common way for Sprycel to cause a rash, which leaves me concerned about cutis.

Has anyone had a similar experience?

Thanks,

Bill

[super99]

Bill,

I have ongoing rashes after taking Sprycel.  They come and go.  I had it on my arms and legs first.  I had a red face for a few months and it went away.   Last month I had very itchy, burning rashes on my ears. I had to use a steroid cream to stop the itch.  A week ago I felt a burning sensation on my face. Sure enough I looked in a mirror, I saw some rashes. I think Sprycel definitely causes a rash. See a good dermatologist, if you need to. 

Supanee

[alexamay09]

Hi. I never had an itchy radh but rather inflamed and hot on my face. Milder on chest area. I take an anti histamine every day and this seems to keep it at bay.

Alex

[Lbellabliss]

Hi Bill,

I'm not sure if you ever resolved this problem, or changed drugs, but I have been on 100mg of Sprycel for 3 months now and I have the same rash! Small pimples essentially all over my arms, upper back, chest, and abdomen area. Did you ever figure out something that helped? My doctor always looks at it. He isn't concerned- more of just an annoyance.

[hannibellemo]

Hopefully Marnie will see this and reply. She has dealt with a Sprycel rash that started quite awhile after she started taking Sprycel and may have some recommendations. Due to a pleural effusion she is on a reduced dose and her rash seems to have improved according to one of her recent posts.

You can find more info by searching on this site for Sprycel rash if you haven't already.

Good luck!

Pat

[August1]

Hi Lbellabliss,

Not yet unfortunately. My rash started about 7 - 10 days after starting Sprycel and has never really gone away completely. Although it's pretty mild, and doesn't bother me much it's annoying. I also recently had a four-day break from Sprycel and I did see some improvement. I am seeing a dermatologist and he prescribed something which helped a little but didn't resolve it completely. He took a small biopsy, which was benign, and I have a follow up appointment next week. If I find anything that helps I will be sure to let you know!

[Marnie]

Ugh!  Sprycel rash.

Pat had my info quite correct.  No Sprycel side effects for about 3 years, but then got a horrific rash on neckline, scalp and in ears.  Had it for about a year, nothing helped.  Went to a dermatologist, but that was a waste of money.  Aveno lotion was soothing.  Pine Tar shampoo didn't help (and it smelled bad).  Coconut oil was soothing (and didn't smell as bad). . .you can find it in the cooking section of a health food store. . works better than the coconut lotion in the lotion section, which is too perfumy for me. 

The only thing that has helped has been reduced dosage of Sprycel.  At 70 mg (after a 9-day drug break), the rash on my scalp disappeared, and neckline got better.  At 50 mg (after a 15-day drug break) the neckline cleared up and the ears cleared up.  Now after a month or so of 50 mg my left ear is starting to itch again.  Darn.  But scalp and neckline are fine.

Sad to say that for me, the only solution to the Sprycel rash was to get a pleural effusion.    At least now my doc realizes that I can't be on 100 mg.

Marnie

PS  You should have seen me at my worst.  We were on a motorcycle camping trip.  My ears swelled up to twice their size.  Try pulling on a very tight Arai helmet when your ears are swollen and firey hot.  Add to that mosquitoes so bad that we had to wear headnets when we were outside of the tent.  My ears were not a pretty sight.  I woke up one morning with my husband's face a few inches from mine inspecting my ears.  Or maybe he was trying to find my face hidden by the bulging, red, swollen blobs on the side of my head.

[C.R.MacDonald]

I've had to deal with the Sprycel rash, also. I went to my Dermatologist, and he prescribed me 100mg Minocycline. It has been a great solution. However, after about a full year on it, its effectiveness has started to fade and the rash is slowly reappearing.

Still though, for those suffering with a strong case of the Sprycel rash, it's a great solution even if the relief only lasts a year. Mine was widespread everywhere (face, torso, limbs, etc.) and it cleared it up totally. My Hematologist suggested that I could try going off of the Minocycline for 3 weeks or so and try reintroducing it back into my drug regimen, but he admitted he doesn't know if it would work, as it's just a shot-in-the-dark.

It's been such a great relief for me. If there's anyone out there who has other success against the rash issues, I'm sure it would benefit many others with this issue. It seems to be a common problem.

[pammartin]

I experienced a similar rash on my arms and ears when taking Sprycel, the arms were bumps, my ears would be on fire and red as a fire hydrant. It often felt like I had burned them. My rashes came and went randomly, the only things I found that helped somewhat were lotions with oatmeal base and prescription Metro Gel. The gel was very helpful with my fire ears. It is a bit gooey and greasy but worth the greasy texture. Best of luck with the Sprycel side effects!
Pam

[LAC1223]

Hi all, Yet again I find myself on a CML /Sprycel roller coaster and looking to this site to see if I am just going crazy or others have had the same problem. I have been on 100mg of Sprycel since July of 2011. For the past two years I have been getting the fiery red face...comes and goes with no warning. Today I got a red bumpy rash just on my left arm. Been under a lot of stress at work and thought it was hives, but then I started thinking I should check here. Thank you all for your honesty and sharing and kindness in replies!