Severe pain so may have to stop Ibrutinib

Many thanks to all who responded to my query re Ibrutinib and Ibuprofen. In the end consultant said not a good idea. Im any case I am still suffering severe muscle pains and have dropped down to only 1/3 dose. If pains continue will have to stop Ibrutinib. Very disappointing. My blood results have improved greatly since start of FLAIR trail in November 2015, from peak of over 300 now down to 59 WBC. If I have to stop what are my options. FCR I guess....unless I qualify for another trial...Feeling very fed up.

8 Replies

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  • Romarin,

    My doctor said no to ibuprofen due to platelets. Didn't care for Tylenol due to liver involvement. I was in a trial with idelalisib and had high liver enzymes.

    So he prescribed OxyCodone. I can take a 1/4 of a tab and get relief for pain. He said it doesn't contain aspirin or anything else so it's good for low dose and occasional use.

    Just a thought.

    Jeff

  • Sorry you're still suffering romarin, hope they can come up with something to help, fingers crossed, Terry

  • thanks Terry

  • Good morning

    How long have you been on Ibrutinib? The pains normally start within a few weeks and can last in severe form for one to two years. I would stay with it, it's worth it for the results you are getting and will eventually get. No pain no gain!!

  • Thanks for your reply. I have been on Ibrutinib since Nov 15. But severe form of pain for up to 2 years! I can't leave the house due to leg pain over several days, can't plan any visits, work or travel....

  • Have your doctor prescribe Neurontin (gabapentin) first at 100 mg (my husband took it at night). He had terrible muscle spasms in his legs and hands. He had been on gabapentin years ago for tib-fib fracture. He also drinks a bottle of Powerade through the day. It worked for him, muscle spasms have now eased off. He has been on ibrutinib now for 2 years and no longer takes gabapentin. Give it a try, it can't hurt and it may help. It was his suggestion to our oncologist not the other way around.

  • Thank-you! I will certainly ask....

  • Hi Romarin

    So sorry things are not improving for you. Is it the drugs you are taking or something

    That you had before the trial started as you state above. Whatever severe pain is hard to cope with continually and I hope relief is available for you soon.

    Take care.

    Sue

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