28 replies to this topic

[JMGrad]

Hi everyone

     I woke up this morning with a nice rash. Its tiny little red spots all spread out over my back,neck and upper legs with some larger patches on my back where I itched during the night (I remember thinking in my sleep - wow the dogs must have fleas.) Ive been on Gleevec 400mg daily for about 11 days. I have gone back and read how it's a common side effect and if it gets bad enough the dr will stop for a week or so, and then restart you back on a lower dose gradually back to normal. And when I went to my oncologist this afternoon she said she wanted me to stop - but Im scared to stop. It's not horrible, yes it itches but I can bear it. So then she told me to go home and wash EVERYTHING in fragrance free/dye free soap. She also sent me home with a presciption for prednisone with instructions on if it got worse, stop the Gleevec and start the steriod . Should I stop taking my Gleevec? Is this going to get worse? I know a rash could happen with any of the 3 TKIs. I just dont want to lose this option.

[GerryL]

Have you tried an antihistamine yet? I had the Gleevec rash down my legs, but was already on Periactin (an over the counter antihistamine in Australia), so the rash wasn't as bad for me. I also used a topical antiseptic cream eg Savlon on the rash. The rash lasted about a week or two then disappeared.

[Judy2]

Hi JMGrad,

Interesting. I'm on Sprycel 50mg and called my onc today because on my left thigh I have 2 sores plus a cluster of  about 25 red bubble like dots near the sores, plus about 6 more of these red bubble like dots near my knee. Mine do not itch, the skin burns. I'm afraid it may be Shingles. Does yours sound anything like this? Also, I'm still having a lot of  muscle pain in that leg, I wonder if there is a connection.

Judy

[CindyS]

     Hi JMGrad - I was diagnosed on August 5, 2011 and started on 400mg Gleevec September 12.  I have been reading the posts here, but have not posted until now.  I had a really similar reaction so decided to post my experience.  I developed a rash after about 4 weeks, and we decided to try and wait it out because, like you, I thought it was irritating, but manageable.  A few weeks later I woke up and could barely open my eyes, my face was so swollen.  My onc was out of the country so I went to my GP and she prescribed steroids and suggested I go off the Gleevec.  I was afraid to go off the Gleevec without talking to my onc first.  She actually called me from France that evening and said to take the steroids and stay on the Gleevec and we'd see what happened.  The steroids worked, but as soon as I stopped them, the rash and swelling returned, not as bad, but it was there.  She took me off Gleevec for 2 weeks and everything cleared up.  Within 2 days back on the Gleevec, I broke out in hives and rashes, but the swelling didn't come back.  We decided to try staying on the Gleevec and see if it would work itself out.  All my blood tests are showing that the Gleevec is working really well so I wanted to stick with it if at all possible.  It's been 6 weeks now since I went back on the Gleevec and the rash is pretty much gone most of the time.  It still flares up once in a while, but I take an otc antihistamine and it subsides.  I could switch meds, but that just means a new set of side effects to get used to.  I'm not sure I'm ready for that yet.  Anyway - good luck!!

Cindy

[GerryL]

Hi Cindy,

I take my antihistamine everyday - originally put on it to control migraines, didn't work for that, but certainly helped with the rash. One thing I found is if your system is a bit run down, the rash tries to make a reappearance. Popped up again when I had an attack of bronchitis, but disappeared fairly quickly once the bronchitis cleared up.

[Lynne D]

I have had rash issues on all 3 drugs. The worst being on Tasigna until recently. I am on 50mg of Sprycel and for 2 weeks my skin was crawling. I thought fleas also then I thought ewww bed bugs but no, none of that. I figured I was just on an upswing of my side effects. I finally couldn't take it anymore and my onc. called in prednisone for me. I am on day 3 of a burst and I feel better already. I tried Allegra, Benedryl, otc cortisone and prescription cortisone cream. It's beginning to subside thankfully. I guess I just have to give in and call sooner for the prednisone.

[GerryL]

Sometimes Predisone is the only thing that will work. I had to have it prior to CML days when I had a bad case of hives, nothing else would touch it. Unfortunately it is not a drug you can take long term.

[JMGrad]

Hi Judy

    No. I really dont have any bubbles. It's more like red dots. Im sorry, I dont know what shingles looks like I wish I could help!

[JMGrad]

Thank you so much for sharing your story Cindy! Wow! Youve been through a lot!! I took a Zyrtec this morning - I dont know that it helped with the itching. I am going to take a Benadryl tonight for SURE. I guess its just a wait and see game...

[ChrisC]

> cringe! >

I remember within about two weeks of starting Gleevec, I had a full-body rash and lots of edema: I looked so funny. My onc prescribed prednisone and a diuretic, I took them and they worked. I then reduced the Prednisone as quickly as allowed (constant eating was my side effect from taking it!) and the rash never came back. When I switched to Sprycel seven months later, I had no rash that time, and never again. I also learned that the side effects to the diuretic was awful for me, so I never took one again (after stopping for awhile, then retaking it and noticing the side effect was directly related to taking it).

Once you know your personal response to the TKI, you then have options: live with the rash, and/or try various actions like washing clothing and linens in fragrance-free detergent, etc., and/or taking OTC allergy pills and creams, but especially knowing that the dermatologist will likely be extremely helpful; then you can make educated decisions that work for you.

Best of luck, and a speedy recovery from the rash, and also a brilliant response to your TKI!

[JMGrad]

Hi Chris! How long were you on the prednisone? My onc presribed me I think 7 days... Should I continue to take my Gleevec while taking the prednisone or stop the Gleevec and take it?

[ChrisC]

I was taking it for just a few weeks (end of 2008, can't really remember details), 5mg four times/day to start, then I weaned down as instructed. I continued to take the Gleevec as well, as that was my priority. Of course, we always ask our onc and/or our pharmacist for instructions on drug interactions and any other questions about taking our meds : )

[JMGrad]

Of course   Thank you!!

[Lynne D]

My Onc gave me the choice of taking the break from the Sprycel or trying the Prednisone. Since my response has been so good I didn't want to take a break, so I am continuing the Sprycel and taking the prednisone burst. I finished 3 days of 3 pills and on my 2nd day of 2 pills. I feel soooo much better.

[lrock]

I woke up this morning with a full-body rash, some spotty places and some places that look/feel like sunburn (like on the upper arms) - i've been on Tasigna about a week and a half, been on antibiotic since last monday for a separate infection.  I'm itching all over.  called the dr, he's going to see me tomorrow morning so I'll see what happens there.  I have only had 1 blood pull since starting the meds so I don't have any idea if I'm responding or not - got lots of questions for tomorrow.

[Lynne D]

ARG!!! I have been off the prednisone for 3 days now and I am crawling out of my skin. The itch is back with a vengeance. I don't have a "rash" but I have the "freckle" syndrome - my follicules are all affected and look like freckles. I have had that since I attempted tasigna then back on Gleevec and now Sprycel. So I assume that is here to stay, but my skin is driving my crazy. No rash, I just want to tear my skin off. I really don't want to take a drug holiday because I am responding well to 50mg but I can't take this much longer. I have taken Allegra and Benedryl, I have prescription cortisone cream, Sarna cream, no relief. Any secrets out there?

[Judy2]

Hi Idagata,

I had a terrible rash with welts from Sprycel so I am on 5mg Prednisone and 180 mg Allegra a day. This has taken care of my rash completely. All my doctors tell me that 5mg Prednisone is a low dose and it is o.k. to stay on that amount. Also, I use Basis Soap for sensitive skin  Hope that helps.

Judy

[sschneck]

They usually want you to stop your TKI so they can see if the rash goes away, that way they know for sure its the meds and not something else.  I had a rash like goose bumps all over my body for awhile now all of a sudden the rash is worse on my legs, very red and itchy driving me nuts right now.  I see my Onc tomorrow so will see what he says, last time we talked about the rash he sent me to a dermatologist who really didn't know what to do and gave me a cream that really does nothing.  UGH.  I think the reason it got worse is that my skin is so dry from the dry winter we are having. who knows!!

[Sneezy12]

I use VaniCream all over my body, 2x daily, Hydrocortisone Valerate OINTMENT 0.2% as needed, Sarna Lotion, and an Antihistamine as needed. Avoid oral steroids if at all possible.Frank

[Lynne D]

Well I have tried just about everything I think. I don't have a rash but this incessant crawling skin itchy madness is getting old fast. I did the prednisone burst, I was good while on that. Stopped and it game back full throttle. I have prescription cortisone cream, otc cream, benedryl cream, I've taken Allegra and Benedryl and no relief at all. I try not to scratch but I am covered in my own claw marks. I did buy some apple cider vinegar since it is supposed to be the cure all of everything. I think I am going to go bathe in that. I don't want to take a break from my Sprycel until after my next pcr on the Mar. 7. I have had a nice steady response on 50 mg. If my next pcr is the same I am going to take a break and try and restart on a lower dosage. I didn't think that itching so much could drive one so crazy. I can't sleep. Just venting all thanks. Lynne