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Excruiating bone pain!!

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#1 amurray


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Posted 20 July 2013 - 12:37 PM

Hello to everyone,

I recently was switched from Sprycel to Ponatinib because of a mutation Q252H. My pcr  was 13.186% on IS, thankfully after a month on ponatinib the pcr came down to 2.7788%, yay. Right before I found out about the increase, I started experiencing horrible bone pain in my legs and hips. I have been on ponatinib for a month in a half and still am experiencing this. At night, the pain becomes unbearable. It does not happen every night but the only relief I can get is soaking in a hot bath. Has anyone else dealt with this? Last night, I didn't get to sleep at all because of this. I do not know what to do. I told my doctor and she said it was stress related and could also be because of wearing flip flops. I think she is crazy this is severe pain equal to kidney stone pain! Any input?

#2 Trey


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Posted 20 July 2013 - 04:40 PM

Glad to hear the good news that your PCR has responded. 

The bone pain is real and directly tied to TKI drugs.  Switching to a new TKI can cause a change in side effects, as you are experiencing.  This is because they each have a few "off target" kinases which they inhibit (i.e., they interfere with normal body signalling which we would prefer the drug would not inhibit).  The bone pain can come on sooner for some, and later for others.  The body must get used to the drug, and the pain can often subside or even go away (no promises).  Others may want to describe their actual experience with Ponatinib (Iclusig).

#3 amurray


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Posted 20 July 2013 - 06:13 PM

Thanks Trey, My prayers are that it will go away.I am not sure but I think it could be cml more than the tki since i was experiencing this before the switch. The rapid growth of the cells and now the rapid elimination of them may be the culprit.Praying it is versus a side effect. I was so fortunate with Sprycel and did not have any. Gleevec however was a year of continuous vomiting and nausea. It is such a blessing that Ponatinib is working so well with or without side effects. So far my blood counts are putting up with ponatinib great. Fingers crossed this will go away soon. As I have told you before thank you, you have been the most consistent source of support and information, you are simply amazing Trey!!!

#4 jrsboo


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Posted 20 July 2013 - 10:41 PM

Yes, I have had the bone pain on both Sprycel and Iclusig.  I decided to switch back to sprycel from Iclusig in part because of the pain.  The only way I could get it to stop was to take 600 mg ibuprophen and 50 mg of tramadol together, then wait 20 minutes in the hot tub for the effects of the pain killers to start. 

Your dr. is an butt head if he thinks that bone pain of our caliber can be caused by flip flops.  NO ONE would wear them if it did.

Sorry you are going through this.  Ask for pain killers.  No, that was too subtle.  Demand pain killers.



oh yeah, for me, the bone pain was worse on 100 mg. Sprycel.  While the pain was less severe with it did not go away on Ponatinib (Iclusig), it was more regular though.  Am on 50 mg of Sprycel now and that is MUCH better.  Still get pain, but now I know what to do.

#5 Cliffee



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Posted 21 July 2013 - 09:17 AM

I had some bad bone pain in my legs when I first switched from Gleevac to Tasigna. I was told by Dr. Druker's assistant Carolyn to take Calcium Citrate with Magnesium. I did and the pain went away completely withing a few days. I recently took a trip and forgot the calcium and within a few days the leg pain started up again. Ran to the store bought some. Two days later pain was gone.

I'm pretty sure the Calcium did it for me. Give it a try.

#6 Pin


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Posted 21 July 2013 - 11:10 PM

That's what I take as well - I really notice the pain coming back if I go without for a couple of days. Mine is mostly cramping/muscle pain though. I do get other weird random bone pains, and pain in my skin sometimes - I haven't noticed as much of a decrease in those with the magnesium/calcium.

Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.


2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14

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