Jump to content


Photo

Has anyone had hives with Gleevec?


  • Please log in to reply
26 replies to this topic

#1 simone4

simone4

    Advanced Member

  • Members
  • PipPipPip
  • 64 posts

Posted 29 July 2015 - 10:16 AM

I have been on Gleevec 300mg. for over 6 years.  I experienced itching the first few months

and my dose was reduced.  I have done well on that dose and have had rashes throughout

this time.  However, in May I had a bad bout of hives (Urticaria) dx by my dermatologist.

She told me it a medicinal rash brought on by the Gleevec.  Advised me to consult onc. which

I did and I took a Glevec vacation for a week.  After a day or two the rash went away and

I did not itch at all.  When I went back on G. 200mg. for three days and then back to the

full dosage, the hives returned but not as bad. June and July have been absolute hell.

I went to minor emergency and the dr. suggested Zantac (H2 receptor) and Benydril

twice daily as well as my Zyrtec which I take daily. It worked for a while and then

this week-end boom the hives are back.  I scratch all night and most of the day.

I did not take G. last night and I am better today.  I do not know what to do.  I will not

live like this. Changing drugs is not an option.  Please any suggestions?

 

Thanks in advance.

Simone



#2 Trey

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 29 July 2015 - 11:29 AM

These things can be hard to pin down.  Certainly Gleevec is the primary culprit, but try to find if you are doing something different in the last few months which is combining to cause the reaction.  Look at soaps (body and washing machine detergent), wardrobe, foods, sun exposure, not drinking enough wine, whatever. 



#3 Buzzm1

Buzzm1

    Advanced Member

  • Members
  • PipPipPip
  • 972 posts
  • LocationSilicon Valley

Posted 29 July 2015 - 12:35 PM

simone4, are you PCRU?  if so, reducing your Gleevec dosage to 200mg could be an option.


For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#4 simone4

simone4

    Advanced Member

  • Members
  • PipPipPip
  • 64 posts

Posted 29 July 2015 - 01:18 PM

Trey, no change in any of those things. .  No  additional drugs and no changes

in food.  (Just because I'm French doesn't mean I drink wine).  My counts are

always low, but maybe my immune system has stopped taking care of me.

 

So sad.

Simone



#5 simone4

simone4

    Advanced Member

  • Members
  • PipPipPip
  • 64 posts

Posted 29 July 2015 - 01:21 PM

Buzz, no I am not undectable. I was for about a year, but no longer.

I tried 200 mg for a few days and it made such a difference in side

effects.  I wish I could do that.  It might decrease my survival, but

I would be willing since I have no quality of life itching all day and night.

Thanks for your response.

Simone



#6 Billie Murawski

Billie Murawski

    Advanced Member

  • Members
  • PipPipPip
  • 711 posts
  • LocationErie,Pa

Posted 29 July 2015 - 07:17 PM

Simone I have never claimed to be normal, but this happened to me several years ago before cml. I like white wine and Ron and I went to this winery and I bought a couple bottles of their white wine and after one glass my left arm broke out in hives I didn't think much about it I just figured my arm had brushed up against something, but it turned out that every time I had a glass of that white wine my left arm broke out in hives I normally don't even get hives I mentioned it to Ron and he saw what happened and just shook his head and walked away (actually he does that a lot). I mentioned it to my pcp a few months later and I laughed about it and she said it's not that uncommon I cracked up but she said the body can react in strange ways to the weirdest things and our bodies change frequently (mine sure does and not in a good way) but you can develope an allergic reaction to something overnight this is fresh fruit and vegetable season have you been eating something seasonal lately? I hope it clears up for you soon.  Billie



#7 gerry

gerry

    Advanced Member

  • Members
  • PipPipPip
  • 1,035 posts

Posted 29 July 2015 - 07:20 PM

Did you increase on the 200mg or is it enough to keep you stable just not lower the CML?

Or could you try splitting the dose 200mg in the morning and the 100 at night?

 

I know when I wound up with bronchitis the rash came back for a short time, so for me it was related to how my immune system was travelling.



#8 simone4

simone4

    Advanced Member

  • Members
  • PipPipPip
  • 64 posts

Posted 30 July 2015 - 09:33 AM

Billie, thanks for replying.  I do not drink wine, but I do eat seasonal fruits and

vegetables.  I have always eaten them and never a problem.  My immune system

is shot and my skin is always the organ that takes the blow.  After taking

200mg. last night I began to itch for 2 hours, but it is not so bad this morning.

But 300 mg is my regular dosage, so I will see what happens tonight.

 

Take care.   I hope you have had a decent summer.

Simone



#9 simone4

simone4

    Advanced Member

  • Members
  • PipPipPip
  • 64 posts

Posted 30 July 2015 - 09:40 AM

Gerry, thanks for the idea of splitting it up.  I will ask the onc if I could take 200am

and 100pm. I have been on 300 mg since about 6months after taking the first dose.

(My English is horrible).  And this itching is like what I experienced then, over 6 years

ago.

My attitude is not good.  I 'm ready to throw in the towel but I know the outcome

would be worse.

Take care.

Simone



#10 Buzzm1

Buzzm1

    Advanced Member

  • Members
  • PipPipPip
  • 972 posts
  • LocationSilicon Valley

Posted 30 July 2015 - 09:45 AM

Gerry, thanks for the idea of splitting it up.  I will ask the onc if I could take 200am

and 100pm. I have been on 300 mg since about 6months after taking the first dose.

(My English is horrible).  And this itching is like what I experienced then, over 6 years

ago.

My attitude is not good.  I 'm ready to throw in the towel but I know the outcome

would be worse.

Take care.

Simone

simone4, not to worry, your English is great ... 


For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#11 Billie Murawski

Billie Murawski

    Advanced Member

  • Members
  • PipPipPip
  • 711 posts
  • LocationErie,Pa

Posted 30 July 2015 - 10:03 PM

Simone, have you had your liver enzymes checked lately if they are elevated it could cause itching. Just a thought. I feel so bad for you constant itching would drive me off the deep end.   I hope you feel better soon Billie



#12 simone4

simone4

    Advanced Member

  • Members
  • PipPipPip
  • 64 posts

Posted 01 August 2015 - 10:42 AM

Billie, my liver seems o.k. Onc ordered extra testing to be sure, after I

told him that sometimes liver cancer presents itself with rashes.

Thanks for your help.  I was awake for hours last night after I took

the Gleevec. I was itching all over and now I have round places in my

skin from my nails.

Hope all is well with you.

Simone



#13 Billie Murawski

Billie Murawski

    Advanced Member

  • Members
  • PipPipPip
  • 711 posts
  • LocationErie,Pa

Posted 03 August 2015 - 02:24 AM

Oh Simone, You must be going through hell does cortisone cream help. You can buy 1.0 strength but they have 2.0 prescription strength. or is it all from the inside. At least tomorrow is Monday and the doc should be able to help you, God forbid we have a problem on wednesdays or on weekends. A lot of docs are only in on half days on Fridays too. So all we get are answering services that tell us the doc will be in on Monday or go to the er. What ever happened to docs being on call for other docs?  take care Billie



#14 simone4

simone4

    Advanced Member

  • Members
  • PipPipPip
  • 64 posts

Posted 12 August 2015 - 09:53 AM

I don't know how to bump this topic.

I went to my oncologist last Friday and he took

me off Gleevec for 10 days.  (I took myself off

of G. two days before.)  Anyway, I have been

off for a week and the hives while quiet during the

day are horrible after I shower and lie in bed.

They itch, but not as much but very red and move

around my body. He looked at the hives and remarked

they were extensive and asked if wanted an oral steroid.

I refused thinking they would get better after staying on

Atarax for a week or so. Has anyone had experience with

Medrol or other steroid for a week?  I need to take it

before I go back on G.

And where do I go from here if the hives are not from G.?

Any help is appreciated.

Thanks

Simone



#15 Dona_B

Dona_B

    Advanced Member

  • Members
  • PipPipPip
  • 104 posts

Posted 12 August 2015 - 02:56 PM

Have you thought of researching detox baths? I did a quick search and found several online. When my kids had chicken pox years ago, I bought oatmeal bath packets (Aveeno, I think). I don't know if they still make or even if they would be available where you live. Before CML, I took a couple of baking soda baths but after a couple quit.

 

(Disclaimer: Not a medical professional, just a regular Jane who likes to try home remedies.)


DX 1/14; Sprycel 100 Mg, liver toxicity; Sprycel 80 Mg; down to 50 Mg for 5 months. Numbers going up. Back to 80 Mg 10/16 (with 50s slipped in to use up) BCR/ABL: .0047 12/15; .0302 4/16;  .0528 8/16;  .084 10/16; .045, 1/17 back up on 80 mg Sprycel; .006, 3/17; .016, 7/17; Shingles 8/17


#16 gerry

gerry

    Advanced Member

  • Members
  • PipPipPip
  • 1,035 posts

Posted 12 August 2015 - 06:50 PM

Hi Simone,

 

Not sure how hot your showers are, but they need to be tepid

  • avoidance of factors that make the condition worse - such as aspirin, codeine, sunshine, heat and hot showers

I had the Gleevec rash, but it wasn't as bad as the hives I had earlier, predisone worked for me. My hives seemed to be caused by whatever they treated the cane chairs with where I used to  have coffee, the other two girls I had coffee with also got them, so we put it down to that.

 

Hope you can find an answer to them.



#17 simone4

simone4

    Advanced Member

  • Members
  • PipPipPip
  • 64 posts

Posted 13 August 2015 - 10:16 AM

Hi Simone,

 

Not sure how hot your showers are, but they need to be tepid

  • avoidance of factors that make the condition worse - such as aspirin, codeine, sunshine, heat and hot showers

I had the Gleevec rash, but it wasn't as bad as the hives I had earlier, predisone worked for me. My hives seemed to be caused by whatever they treated the cane chairs with where I used to  have coffee, the other two girls I had coffee with also got them, so we put it down to that.

 

Hope you can find an answer to them.

gerry, I take cool showers but still itch when I go to bed. I washed my mattress cover and

sheets in free detergent.  It seems to really be bad after shower, blood dilating and all.

They are better today, but we will see tonight.

Thanks for  your imput.

Simone



#18 simone4

simone4

    Advanced Member

  • Members
  • PipPipPip
  • 64 posts

Posted 13 August 2015 - 10:21 AM

Have you thought of researching detox baths? I did a quick search and found several online. When my kids had chicken pox years ago, I bought oatmeal bath packets (Aveeno, I think). I don't know if they still make or even if they would be available where you live. Before CML, I took a couple of baking soda baths but after a couple quit.

 

(Disclaimer: Not a medical professional, just a regular Jane who likes to try home remedies.)

I bought the Aveeno yesteday at the pharmacy.  Will try tonight at the DREADED Bath.

Thanks



#19 hannibellemo

hannibellemo

    Advanced Member

  • Members
  • PipPipPip
  • 728 posts
  • LocationNorth Central Iowa

Posted 16 August 2015 - 02:05 PM

Simone,

 

I'm so sorry you are going through this. Itching can just be the worst! After almost 6 years on Sprycel I am also experiencing some kind of rash. Sometimes it itches, sometimes it doesn't. But what happens is I get small red spots and then I get what look like tiny round dry spots on my skin and the skin flakes around them.

 

I thought I would try Aveeno Skin Relief body wash and lotion to see if it gives me any relief.

 

Hope the idea of breaking up your dosage works, that sounds like it might be the best idea yet! Perhaps you will find some relief in the fall when it isn't so warm and humid. 

 

I haven't been to the GP yet, I think I will bypass and see if my onc will get me a referral straight to a dermatologist.

 

Keep us posted! Remember what I said about your English, it's fantastic! Do you think many of us could communicate with you in French?

 

Take care and good luck. 


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#20 simone4

simone4

    Advanced Member

  • Members
  • PipPipPip
  • 64 posts

Posted 17 August 2015 - 10:03 AM

Pat, I'm still suffering with hives.  I am taking atarax bid which is helping with the

itching.  I see onc. on Wed and I have been off Gleevec for two weeks.  He

will slowly increase the dosage back to 300mg.  My last PCR was .004 so I am

ok I guess.

My suggestion to you is to take a Benadryl and if it abates the itching, you know

it is an allergic reaction.  I know we started these drugs around the same time

6 years ago and now this!  Every morning I wake up and think of Dorothy Parker

"What fresh hell is this?"

The dermatogist has been useless and more useless each time I enter her office.

I am going to see my Allergist on Thurs.  I haven't seen him in years, but he is

a good diagnostician and maybe he can figure this out.

Me....Me.. Sorry, I hope you will try an antihistamine and the best lotion is

called Sarna.  It relieves better than even the Rx creams.  It is otc.

I hope we both find some resolution to our skin issues.

Take care.

Simone






1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users