Side effects from imbruvica

[DRADCLIFF]

I started taking imbruvica a week ago. The side effects are awful. Every joint in my body has hurt, I just feel bad. Please someone tell me this is normal and it will go away soon!!

[jeandorinski]

I'm also new to this site and have starting taking imbuvica 420. The side effects are bad. Hopefully we can get through this together.

[DRADCLIFF in reply to jeandorinski]

I hope so. Keep me posted on how you are.

[Newdawn Administrator]

Arthralgia sadly seems to be a well documented side effect of Ibrutinib and I’m certainly not managing to dodge its impact! I’ve been on Ibrutinib 17 days and am really pleased with the improvements but the roving joint and muscle pain is very significant to the extent I can barely stand today. I already suffer with pretty significant arthritis so expected ‘the hit’ but not being able to use anti-inflammatories is hard! 🥴

It’s does seem that this can be a transient side effect as the body acclimatises to the meds but worth mentioning to your specialist if it’s becomes too great to manage.

Regards,

Newdawn

[DRADCLIFF in reply to Newdawn]

Why can’t you use anti-inflammatories?

[Newdawn Administrator in reply to DRADCLIFF]

I’m on the Flair trial (on Ibrutinib & Venetoclax). Anti inflammatories are not recommended due to their possible impact on platelet function. Last time I took a course I ended up with 17 bruises! For me they also depress kidney function and give me raging tinnitus...but they do ease arthritic pain!

Ask your specialist for advice on this. Sometimes steroids are suggested in extreme circumstances I understand.

Newdawn

[DRADCLIFF in reply to Newdawn]

Oh no. Bless you. I hope you get some relief soon.

[Newdawn Administrator in reply to DRADCLIFF]

I’ve had it over 20 yrs so I’m not hopeful of Ibrutinib improving matters but thanks anyway and all the best to you too.

Newdawn

[Newdawn Administrator in reply to DRADCLIFF]

Important to read this;

‘Ibrutinib has a mild anti-coagulant effect essentially equivalent to 325mg of Aspirin. It is important that you provide a complete list of medications that includes any nutritional supplements or over-the-counter medications to your provider. Your provider or the clinical pharmacist assigned to your clinic will review your medication history and make recommendations on items to reduce or eliminate. Some common medications to avoid without provider approval are, aspirin or Non-Steroidal Anti-Inflammatory agents such as ibuprofen, naproxen, or diclofenac; and anti-platelet agents. In addition several herbal products can enhance the anti-coagulant properties of ibrutinib including Omega-3 Fatty Acids (Fish-Oil), Flaxseed Oil, Vitamin E, and Curcumin/Tumeric.’

cllsociety.org/2017/09/thin...

Newdawn

[DRADCLIFF in reply to Newdawn]

Thank you for posting this. I’ve been taking a prescription strength ibuprofen for the headaches. Guess I’ll stop taking it.

[Newdawn Administrator in reply to DRADCLIFF]

I’d discuss it with your specialist if you’re on Ibrutinib because an alternative may be recommended. I take it by ‘prescription strength’ you don’t actually mean ‘prescribed by the doctor?’.

I’ve stopped taking ibuprofen completely on medical advice.

Newdawn

[DRADCLIFF in reply to Newdawn]

Yes it was prescribed but it was before I started imbruvica.

[AnneHill in reply to Newdawn]

Im taking Naproxen, tramadol and also fish oil. I put Linseeds on my cereals. I have constant pain. Arthritis and fibromyalgia. My lower back is unstable from damage to the discs and surgery. Iv recently cut the tramadol from 400mg to 300mg daily. Iv tried to cut the naproxen out in the past and I end up in agony.

I find it worrying cutting the things that help. I wont be much longer before I take ibrutinib. What about the linseeds? They work wonders for constipation. Do seeds cause a problem if they have omega3 ? Anne

[Newdawn Administrator in reply to AnneHill]

You’d need to consult your specialist about the linseed and fish oil use Anne but of more concern is the continued use of Naproxen which I can no longer use. It’s contra-indicated on Ibrutinib as is ibuprofen. I’m having to rely on paracetamol and heat patches.

Like you I have significant arthritis and it does feel as if Ibrutinib hones in on weakest spots. I’m hoping it’s short lived! 🥴

However, it’s clearly doing its job because the nodes are now down massively!

P.S. constipation isn’t usually a problem with Ib...the runs are more likely!

Newdawn

[AnneHill in reply to Newdawn]

I will mention this to my consultant. Im wondering if venetaclax has the same side effects. When NICE agreed venetaclax and rituximab I mentioned it and he hadnt heard about it. It will be filtering down in time and it will be interesting what the hospitals attitude is to it.

Im having an ultrasound scan on Thursday to look at my spleen. I wanted to start treatment because I feel so exhausted but the consultant thinks I may get worse problems because of side effects.

Im being unrealistic I realise. Do you have more energy? Anne

[Newdawn Administrator in reply to AnneHill]

Yes I do have more energy Anne despite the side effects.

I can fully understand your concerns about starting Ibrutinib because it’s a miracle drug but it exacts a price for many with side effects. Thankfully, most are liveable with and transient in nature.

I noticed an improvement within 36 hrs and I started it whilst still having a respiratory virus (which hasn’t completely cleared). I had IVIG at the same time.

I’d reached a low point physically and mentally and the nodes were becoming bothersome and unsightly to me. I’d underestimated how much internal lymphadenopathy I had and I was very fatigued. I’d reached the 3 naps a day scenario. Since starting Ib, I rarely nap.

Co-morbidities like arthritis are challenging starting any treatment but I’m determined to work through the side effects because I have to! I’m starting Venetoclax in addition in about a month’s time.

Best wishes,

Newdawn

[AnneHill in reply to Newdawn]

Im glad you are doing so well. Having more energy is a great bonus. Maybe I will have more backbone if I have more energy. Iv made myself go for a swim this morn and as usual fall asleep when I got home. Good luck. Anne

[mrsjsmith in reply to AnneHill]

Swimming, good for you Anne,

I find that now I have worked out how to pace myself and I try to do most things in the morning and trying to have lunch as late as possible helps before I vanish into that twilight zone on the sofa and a couple of hours vanish !

Colette

[AnneHill in reply to mrsjsmith]

Iv been going swimming for years. I cant walk very far and its great for everyone but especially for those with poor mobility. Pacing def works but even cleaning the bathroom made me feel ill Saturday. Trouble is I might feel worse when Im treated.

[mrsjsmith in reply to AnneHill]

Anne,

Hopefully any treatment will help with your fatigue. I have been on Ibrutinib for over a year now with minimal side effects. Some good and some not so good days ! But then let’s say I am at a ‘certain ‘ age and that no doubt is a contributing factor to tiredness.

Regards

Colette

[AnneHill in reply to mrsjsmith]

Thankyou. That gives me hope. It depends what the ultrasound scan shows. Im having that on Thursday and consultant in 2 weeks time. Anne

[mrsjsmith in reply to AnneHill]

Anne,

I hope you get positive news and can move forward.

Colette

[Corkyrissa in reply to Newdawn]

Hi Newdawn I’m replying to you because of your knowledge of imbruvica. As I’m writing this I’m in the hospital for neutropenia. I have been on imbruvica since August 2017. The dr said he doesn’t understand why my wbc counts have gone down in the past 2 months. This took me for a loop. Never imagined I would be neutropenic again. Have u heard of this happening. He keeps asking me if I have taken any new meds or otc. I don’t want to stop imbruvica because I have felt so good while on it. Ty

[Newdawn Administrator in reply to Corkyrissa]

Yes we’ve had frequent reports of neutropenia on Ibrutinib Corky. I hope they can give you treatment to raise them again because I can appreciate the use of Ibrutinib is absolutely essential.

I’m new to Ibrutinib and hoping not to succumb to this issue.

Best wishes,

Newdawn

[Hidden]

as long as you make sure it's not masking a fever-acetaminophen/paracetamol/tylenol is the only safe thing for pain. However it has no anti-inflammatory properties

[zaax]

nearly everyone gets it - it means Ibutinib working, they will go after a few weeks. Make sure your drinking at least 3 pints of water a day.

[RJR1 in reply to zaax]

I’m 3 years on Imbruvica...3 pints of water daily seems a bit lite... I was told at least 3 quarts and more if you can.

[TimHB]

Hang in there, it gets better. I've been on ibrutinib for 10 months and the first few months were the worst. I now have some joint pain and fatigue but it is very manageable and far better than the alternative.

[dmmck]

After six months on ibrutinib most of the side effects disappeared except the crumbling fingernails and some sinus issues. It’s been nine months now and I am feeling quite well. Give it time. I hope it works as well for you.

[Canuck901]

Are you on the Gen 1 or Gen 2 ibruntnib?

[DRADCLIFF in reply to Canuck901]

Not to sound stupid but I’m not sure. Imbruvica 420 mg is what I’m on.

[Lenny123]

Water, really lots of water may help. i drink alkaline water, not sure why, but love it, by bedside, honk tons of tea during day. we are 60-70% water, a mass of chemical reactions, so keeping really hydrated, probably makes sense.

[livinglifewell]

Hi, hang in there, I've been on ibrutinib for FIVE years this month. The myalgia(muscle) and arthralgia (joint) pain has not improved for me, though it waxes and wanes. I think walking and swimming, and other physical activity does help. I cannot take anti-inflammatories and Tylenol doesn't budge the discomfort. Cannabis does work though.

[Canuck901 in reply to livinglifewell]

Wow 5 years ? How’s your blood work numbers ? Are MRD negative and what’s your age if you

Don’t mine me asking

Congrats that you’re doing well!

[livinglifewell in reply to Canuck901]

I'm 64 and my numbers are perfect, though they have always been WNL, my disease presents in bulky nodes.

[larry54]

I have been on Imbruvica for 17 months. I went through all the aches you are going thru now. I got the joint aches, rash,and the runs. this all lasted about 2 1/2 months. It will go away.

[DRADCLIFF]

Thank you all for the info. Even though I’m only starting my second week some of you give me hope that at least it may calm down eventually!!

[craftmom]

Dradcliff,

My husband was on Ibrutinib and had a terrible time with joint pain. He was in bed and could barely walk most of the time. He stopped it and when necessary to restart, he started a clinical trial of acalabrutinib, which is a more targeted therapy. Thank G!d it has been working and he is doing well. As others have said, IMHO talk to your specialist about your side effects. Good luck.

[DRADCLIFF in reply to craftmom]

Thank you. I’ll definitely ask my dr about that.

[120940]

Hi, my husband has been on Ibrutinib 420 mg for 1 1/2 months. His constipation and lymph nodes on his neck are gone. He has an inflamed abdomen and he has petechiae on his head and ankles.He tires easily but he is 80 and we still dance at least 3 times a week. He is taking allopurinol for bacterial infection which he doesn’t have an infection and acyclovir for viral infection such as shingles, loratadine for allergies. He doesn’t have shingles. The doctor wants him on this meds so that he doesn’t get sick.

He had a friend that got shingles bad but he was not on meds like my husband. He also takes b12, methyl folate, acid reflux otc , b6 . He never had acid reflux until now . His wbc numbers are improving. The oncologist wants him on ibrutinib for at least a year. Good luck.

[Newdawn Administrator in reply to 120940]

Hi 120940, glad to hear your husband is responding well and great to hear he’s still dancing at least three times a week! 😊

Allopurinol isn’t for bacterial infection incidentally. It’s used to protect against tumour lysis syndrome where, put simply, the cells being flushed from the system through treatment could overwhelm the kidneys. It’s prescribed as a standard along with the other meds prescribed.

Mention the acid reflux problem to his doctor if it persists.

Best wishes,

Newdawn

[120940 in reply to Newdawn]

Thanks