28 replies to this topic

[lrock]

This might not have anything to do with it, but I found my rash tends to try to come back if I'm dehydrated or just haven't had enough liquids over a few hours. Enough to make me walk around with water all the time. I think my original one was caused by an antibiotics reaction.

[cdrocab]

I have been on Gleevec for almost 9 years and have several days in the month with what I call, "My Mystery Rash". It has been going on since the very beginning so I have had all sorts of medications and home remedies. What is weird about my itching is that there is no rash per se, just itching. I use antihistamines in nasal form or oral meds, bath in cool water using baking soda, wash my clothes in unscented soap and try not to sweat since that sends me into a manic itching fiasco which can lead to bloody areas on my scalp. I use a lot of Sarna which is Pramoxine or an external antihistamine.  Drink tons of water to flush system and be sure all kidney and liver function tests are normal since diseases of those two organs can cause systemic itching.

I can understand you being fearful. Just thinking you are open to an attack by the CML without protection is worrisome.  If you have the time try to find a specialist at one of the big cancer facilities that has a blog for SE of Gleevec. Also, it never hurts to get a 2nd opinion. Good luck and never take someone's last word on your disease as golden, always question and decide what is best for you. I for one cannot stand corticosteroids since they shut my natural adrenal glands down and cause me 20 days of flying high on a speed trip. Do research and whatever decision you make will be an informed one.

[sschneck]

well, I have to stop my Tasigna for a week and Dr. gave me Prednisone to try to knock out the rash.  He is talking about switching me to Gleevec.  UGH!  any thoughts are appreciated.  By the way I just reached MMR 2 months ago so not really looking forward to switching meds.  Was diagnosed in June 2011...

[Judy2]

Hi sschneck,

I too tried Tasigna. My rash was so bad that my chin and the area between my eyebrows were swollen. Once I was off the Tasigna for one week and with the help of prednisone and Allegra the rash went away. I then switched to Sprycel 50mg. I am able to control that rash with 5mg prednisone a day. Please keep us posted, let us know if you make the switch.

Judy

[Idahogal]

The best thing that I have found for this horrible itch is coconut oil. I even rub it on my scalp at night and then shampoo in the morning. It is a solid form but melts easily in my hands, then I rub it into my skin where ever needed. It helps me a lot.

A friend of mine that had breast cancer had me try mineral oil but it was messy and didn't work as well as the coconut oil for me. Good luck, nights are so long when the itching won't quit. I know exactly where you are coming from. I do use scent free detergents, soaps and etc.

[Fas]

JmGrad,

Have been managing Gleevec side effects for 10 years and continue to do so, because the drug has worked very well for me.  Rash was very prevalent when I began the drug.  Red, itch bumps on my face, itchy scalp and breakouts on my arm and hands.  I hated it and it was maddening.  Nothing the doctors gave me helped.  Then I read on another Cml board about success people were having with Aveeno products.  I tried the oatmeal bath and the facial and body cream and within a few weeks the rash all but disappeared.  I still use the products till this day and rarely get severe breakouts.  I also find soaking in a sea salt bath and using ice to quill the itch really helps.   My facial rashes also responded really well to the use of plain Greek yogurt masks.  It cooled the heat and gave me some temporary relief from the itching.  I try to use natural remedies when possible and for me they have been useful, but everyone's experience is different. 

Hope you are feeling better,

Fran

[sschneck]

Rash is much better after a week with no Tasigna and a prednisone run.  Dr. wants to switch to Gleevec, feels that Tasigna may be too hard to control...My legs still itch but aren't red and broken out anymore...will start Gleevec in about 3 weeks.

[Judy2]

Hi sschneck,

Good luck with the Gleevec, please keep us posted.

Judy

[GerryL]

I was on Periactin (an antihistamine) twice a day for migraine when I started Gleevec. I got the rash down the back of my legs, but didn't suffer from any itch. It cleared up within a couple of weeks. For me the Periactin stopped the rash from being too bad.

My doc has suggested switching to Tasigna, but my skin is a bit sensitive to a lot of things, so will stick with Gleevec for the moment.