Adverse Reactions

[6468]

Almost 3 mos. on imbruvica and side effects getting worse. Having alot of bone and muscle pain. It is worse at night and have trouble sleeping. My labs are good but I'm not! I've done advil ---helps some. Anyone else having similar problem? Also nasal drainage--like bad allergies, nasty tongue.

[Cllcanada Top Poster CURE Hero]

Advil® (Ibuprofen) is an NSAID analgesic pain relief product, generally not recommended while on Imbruvica (ibrutinib), much like ASA. It could cause platelet issues, bleeds and so on.

If things are escalating, then talk to your doctor about a temporary dose reduction of Imbruvica (ibrutinib). Do not reduce doseage yourself, you may run into problems.

There are a number of other strategies for pain management...consult your treating CLL doctor...

For the nasal matter, you might have a fungal infection, a swab and culture would help clarify this...

All the best

~chris 🇨🇦

[6468 in reply to Cllcanada]

Thank you for your reply. I would always check with my DR. This med is just so unpredictable!

[cajunjeff]

I agree with Chris, you should talk to your doctor. The pain you describe is pain some get with ibrutinib. I have had minor to moderate pain like you describe, but it has mostly gone away.

Supposedly, a lot of ibrutinib side effects get better as time goes on. If it gets intolerable for you, I would discuss with my doctor a dose reduction or does interruption. Stopping ibrutinib for a week or so will at least let you know if the problems are ibrutinib related. If they are, they should subside while you are off ibrutinib. I have read that for some people that they can interrupt use and then not have the side effect as bad when they restart.

The other option is to reduce your dose. When I reported joint pain my doc offered to do that, but the pain wasn't bad enough for me to do so and I did not want to rock my ibrutinib boat that was floating so well.

I hope these side effects fade for you. There doesn't seem to be any rhyme or reason to it as to who gets what side effect. I think for most the side effects can be managed, but for some they make ibrutinib intolerable.

[6468 in reply to cajunjeff]

Thank you for your advice. I would always check with my Dr. first.

[Suzer1553er]

I too had lots of bone and muscle pain while on Imbruvica for over 3 years. I was never able to discern a pattern of when the pain would start but it always left after about 2 days. After the 3 plus years the Imbruvica stopped being effective and my oncologist started me on Venclexta and Rituxin. I fear a Richters Transformation may be occurring. Does anyone know anything about Richters? Good luck with everything.

[Cllcanada Top Poster CURE Hero in reply to Suzer1553er]

I'm Richter's survivor... and work with many RT patients and families... PM me on CHAT here if I can be of help...

There are markers and indicators for Richter's. Most people feel extremely ill in general. It's a crisis situation that requires an immediate appointment with your CLL specialist.. Weeks matter... between transformation to treatment...

~chris 🇨🇦

[Suzer1553er in reply to Cllcanada]

Thanks for responding. Though I don’t feel extremely ill-I have many of the other markers- enlarged nodes and spleen, night sweats, chronic fatigue, high LDL levels and weight loss. I’m seeing my oncologist today and hoping for the best.

[Cllcanada Top Poster CURE Hero in reply to Suzer1553er]

Let me know how it goes.. B2M and high calcium levels are often seen as well... hopefully a PET scan will be ordered if things look to be transforming... a biopsy is gold standard to a RT diagnosis.

~chris 🇨🇦

[6468 in reply to Suzer1553er]

Thanks!

[GMa27]

Claritin without D is helping many with bone pain. Let your doctor know you would like to try it. 💕

[Lola69 in reply to GMa27]

Is that a decongestant?

[GMa27 in reply to Lola69]

Antihistamine. It's amazing that it helps with bone pain.

[Lola69 in reply to GMa27]

And u snort it?

[GMa27 in reply to Lola69]

No its an over the counter pill. Sold in drug stores, supermarkets.... Google Claritin. 💕

[Lola69 in reply to GMa27]

Claritin is used for allergies

[GMa27 in reply to Lola69]

Right! And it is recommended to help with bone pain. Doctors don't know why it helps, but it can relieve bone pain.

[Lola69 in reply to GMa27]

Interesting info. Thanks

[Cllcanada Top Poster CURE Hero in reply to GMa27]

Claritin works sometimes on pain from G-CSFs used to raise neutrophil counts, I have never heard of it being used more generally.. talk to your CLL doctor, ...

~chris 🇨🇦

[GMa27 in reply to Cllcanada]

Used a lot in the USA for pain.

[Cllcanada Top Poster CURE Hero in reply to GMa27]

So is Oxycodone, I have heard... 🤪

[GMa27 in reply to Cllcanada]

Oxcy is a pain killer prescription. Claritin is a harmless antihistamine used for all ages to relieve allergy symptoms. It was discovered to have gotten rid of bone pain from chemo and ibrutinib, etc use. You can not compare the 2. Claritin is sold in grocery stores.

[Cllcanada Top Poster CURE Hero in reply to GMa27]

Not a comparison simply a joke... geeez

Side effects and interaction of Claritin...

rxlist.com/claritin-side-ef...

[GMa27 in reply to Cllcanada]

Oh sorry! Didn't realize you were joking. I put LOL after I joke or laughing emoji. Hard to tell in a text if someone is joking. 😊👍

[Cllcanada Top Poster CURE Hero in reply to GMa27]

LOL 🤪

[virdieblue]

Suzer,

Richter's is very complicated and serious. If you really think you are transforming see your doctor as soon as possible!

Virginia

[Suzer1553er in reply to virdieblue]

Thanks-I’m seeing my oncologist today and hoping for the best.

[barger1951]

I believe that there is a study out there that CLL patients are quite often Vitamin D deficient. I recently received a blood test that told me I was Vitamin D deficient. Also was told by another doctor to stop all dairy and processed foods for a eye condition (constant tearing). Long story short I feel better, but it took 2 or 3 months to correct my condition. I'm also on Imbruvica and have had similar symptoms, every one is different.

Good Luck,

barger1951

[Cgolen99]

I had to be reduced from 520mg to 140mg due to extreme joint swelling and pain. The reduction was helpful. It’s tomerable most days now. Some flare ups are still very bad but short lived.

[6468 in reply to Cgolen99]

Due to much bone pain, my Dr. has reduced my dosage to 120mg. from 420mg. Will give feed back later. Hoping it will help nasal congestion and raw tongue.

[Panz]

Is it possible that the time of day could be an issue....I have found that taking my CLL meds just before bed save a lot of issues.....just a thought. Good Luck!