bone pains

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I have found that on occasions I have quite severe pain in my lower leg bones. This pain is so strong it makes me want to scream out. It is also accompanied with lower leg muscle cramps so I have double problems. My haematologist thinks this is probably due to the side effects of my medication - I take 400mg of Imatinib daily - but says he's not too concerned about it as it only occurs sporadically. At the moment flying seems to be the trigger. Within 24 hours of arriving on holiday I am in absdolute agony. Does anyone else have the same problem and if so how do they gain relief. I need something which give me almost instantaneous relief as the pain is so severe.  I hope someone out there can help me.

trisha48

  • Sorry to hear that it made you feel ill Flushed 
    I find the "juice" quite refreshing now!
    Bone pain comes and goes but is still an issue, my Doc is looking for ways to relieve it though, so hopefully...
    My issue is; I can't take Aspirin or Ibuprofen and those of us on Imatinib cannot take paracetamol. I was offered codeine but I don't get on well with opiates. So I am asking for another solution as we can't stop taking the likes of Imatinib. Have a calm peaceful day  

  • You may be interested in reading this report of a study on Pickle Juice consumption for cramps
    Pickle Juice Study

    O
    f course, i am not suggesting that you have Cirrhosis, but Imatinib is heavy duty on liver function and so may be the reason we experience cramps so much 

  • Hi  Ultradiv, It just made me feel sick, it didn't actually make me ill as such, but it was worth a try. Like you I can't take aspirin as it damages my stomach, so Ibuprofen is out too as it contains aspirin. I din't know about the Paracetamol though, where did you get that information from. I currently take a strong painkiller which is 30/500 strength - 30mg of Codeine and 500mg of paracetamol, and when I've been in hospital thanks to the CML they pump me with Paracetamol to bring my temperature down.

    I am probably going to have to stop taking the Imatinib again as it's affecting my eyes and vision again since they increased the dose. I've had this problem before, and will now probably be given a fifth alternative to see if that works.  My body just doesn't like the medications they are giving me. Oh well, onwards and upwards like they say.

    Speak again soon.

    Trisha48.

  • I will certainly find time to look at the research on Pickle juice. Thanks for sharing that with me. Bye for now. x

  • Hi  I have found studies that say Paracetamol is okay with Imatinib but my Haematologist told me to avoid it and so did an online pharmacy that refused to sell me paracetamol because I declared that I am on Imatinib
    Here is one study against 
    and here is one study for  
    Take your pick, personally I err on the side of caution.

  • Hi again Ultradiv, Thank you for being so helpful. I've printed off the information regarding pickle juice so I have it to hand when I need to refer to it. I have just glanced at the paracetamol information at the moment, but will certainly be studying it in more depth when I can read properly again (I'll explain later). It may be that I have to stop taking the Imatinib anyway. The first time I took it, at the beginning of my treatment, after 6 months my eyes were a terrible mess. I had a negative response to the dose of 400mg.  I was given another treatment, but after even more severe side affects, had to come off that too. As this treatment had done a really good job of lowering my white blood cell count, they decided to put me back on the ,lowest dose of Imatinib in the hope it would keep my WBC low. Unfortunately at my last visit my WBC count had shot up again, so they doubled my Imatinib to 200mg.  Now my eyes are a mess again, so I have to go to the hospital next week to get everything checked over and probably start on a new medication. I have been advised to return to 100mg in the meantime in the hope that my eyes settle down a bit. I'm struggling with reading small print, even this size is a strain, thank goodness I have good keyboard skills lol. I'll keep you informed. Hope all is well with you and that you can tolerate the Imatinib because it does seem to be a good medication, it's just that I am sensitive to many medications, including the Imatinib, so finding the right one for me is going to take some time. Upwards and onwards as they say and keep smiling. Bye for now.