Severe pain so may have to stop Ibrutinib - CLL Support

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Severe pain so may have to stop Ibrutinib

romarin profile image
8 Replies

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.

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romarin profile image
romarin
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8 Replies
Justasheet1 profile image
Justasheet1

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

terryI_uk profile image
terryI_uk

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

romarin profile image
romarin in reply to terryI_uk

thanks Terry

Berrytog profile image
Berrytog

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!!

romarin profile image
romarin

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....

diandgord profile image
diandgord

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.

romarin profile image
romarin

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

wroxham-gb profile image
wroxham-gb

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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