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CLL Support Association
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Muscle fatigue on Ibrutinib

Hi - first time posting and great to know there are others out there. I was diagnosed with CLL in 2014 and now been on Ibrutinib for 4 months. In the last fortnight I have had increased fatigue and definite weakness in my legs. Has anyone else experienced this on Imbruvica? I'm very keen to share experiences ........

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Welcome to the forum Maggie. I'm sorry I can not help with your question as I've never taken Ibrutinib. Hopefully many people will be on to give their experiences soon.

Please take this time to read through the site and any more questions, ask away.

Best wishes.

Sue

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Yes, joint pain and weakness in legs are common on Ibrutinib. These side effects usually resolve - they did for me after about 6 months. Everyone is different but good chance it will get better. Hang in there.

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Thankyou so much for this - it's very reassuring. Also great to get a response to my first post!

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Greetings, Maggie. Yes! I developed aches and pains in my muscles, especially after biking or doing other exercises. I attributed this to "old age" (in great shape but 61yo...). As it worsened, I mentioned it to my oncologist. He said it might be the ibrutinib, but he did not reinforce this much. I contacted the head of CLL group at Ohio State, and he suggested taking magnesium (500 - 1,000 mg) at bedtime. Not much help with this. I stopped the drug and the aches and pains went away within a few weeks. Now I am on venetoclax. Everyone takin ibrutinib should be aware of this side-effect so they don't think they are going crazy or just getting old. Keep us posted!

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Thankyou. It's so good to hear from others - certainly reduces the fear. Was it the reason for changing drug? I'm not familiar with Venetoclax.

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Venetoclax (Venclexta) is a Bcl2 inhibitor. It was recently approved in the US for CLL patients with 17p deletion. If the white blood cell count is high, it has to be started in small doses, then gradually increased over a month. That is because it is so effective that if the WBC is high the massive killing effect of the drug may cause dangerous side-effects. It is more effective in the bone marrow than ibrutinib.

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Its FDA approved second line or greater for 17p-, but could be used off label for other indications...insurance permitting.

Broad approval for venetoclax in all second line use combined with Rituxan should be approved by the summer...

~chris

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Maggie.

I have been on Ibrutinib for 3 years now and occasionally have aches in my shoulders , wrists and fingers. I swim twice a week which keeps the whole thing moving (about 60 laps in the two sessions). The aches were worse at the beginning of the treatment but have definitely waned in the past year.

My main side effect ,I think ,is itchy skin , which nothing seems to shift but overall I suppose I am lucky to have reached nearly 77.

Good luck and hang in there.Mike

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I start IR on Wednesday so really Interested to read this. With the itchy skin, I read a comment elsewhere about mixing frankincense and coconut oil and rubbing it into soles of feet and palms of hands a couple of times a day. This seems to have helped a number of people so I started this regime yesterday

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Hi kas found your post will post my updates when I start let's do this

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Right there with you! X

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Yes, but it did go away. All of a sudden I felt normal again. Maybe around 5 or 6 months.

Virginia

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The only side effect I had was migrating joint pain, but after I started taking 4500 mg of turmeric every day, that went away. I'm not endorsing the use of turmeric, just relating my experience. I have, however, developed muscle fatigue in my shoulders, legs, neck, and arms. Nothing unmanageable, but it's there. I've been on Imbruvica for a year.

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Hi Tina

I've been trying to incorporate turmeric into my daily regime but somehow couldn't get passed 2 days with 400mgx3.

Could you please share with me how to take them and what brand you used?

Seok

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Hi Seok,

This is the link to the turmeric I take. amazon.com/gp/product/B01IP...

Best to you,

Tina

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Hi Sebsgram or Tina

Thanks for your reply. Not sure why I can't seem to find their official website; trying to figure out what's in the 1500mg V-cap? 750mg of Tumeric or 50mg of Tumeric extract?

Also like to know what's a V-cap..?? Btw, how many capsules you take & when do you take them?

Seok

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Hi again,

This is the info I took from Amazon. A V cap is a capsule. There are 180 in the bottle. Very easy to swallow. No problems. Hope this helps.

Turmeric is a bright yellow aromatic powder obtained from the rhizome of a plant of the ginger family, used for flavoring and coloring in Asian cooking. Curcumin is one of three curcuminoids present in turmeric. Curcumin is the most active constituent of turmeric. Curcumin is obtained from turmeric by standardization process. Bioperine is a patented and standardized extract of piperine, from the Black Pepper plant.

Herbal Secrets Turmeric Curcumin is known for its Anti – Inflammatory, Anti-Fungal, Antiseptic and Antioxidant properties. Apart from this it also promotes Healthy Heart and Brain Functions. Bioperine is a powerful nutrient absorption enhancer which means it help to improve the bioavailability of the nutrients you may take.

Each of our turmeric-curcumin with bioperene capsules includes 700 mg of turmeric and 50 mg of turmeric extract (standardized to 95% curcuminoids) along with 10 mg of Bioperine® (an extract derived black pepper known to support the effect on absorption of nutrients from the intestine).

At Herbal Secrets we believe in what a wise man once said, "All that man needs for health and healing has been provided in nature, the challenge of science is to find it". We are passionate in bringing to you premium quality herbal supplements to stay healthy the natural way without artificial preservatives, unnecessary fillers and harsh chemicals.

All Herbal Secrets products are proudly made in USA in accordance with Good Manufacturing Practices (GMP) to ensure high quality. All our products are Third Party Tested.

Product description

Turmeric or Curcuma longa is an herb that grows in Southwest India. For centuries, turmeric root has been used as a staple of Indian cuisine and as a natural remedy for a variety of conditions. The active chemical in turmeric extract called curcumin offers a number of benefits for the body. It acts as a:

- Anti-inflammatory, may help to relieve pain and swelling due to inflammation

- Antioxidant, may help to protect the body from harmful oxidative damage

- Promotes Circulation, to keep blood flowing freely

- Antibacterial, supports immune health

- Promotes Metabolism, assisting with the burning of stored body fat

Turmeric –Curcumin with Bioperine dietary supplements may be beneficial in a number of ways including:

- Supporting Heart Health

- Promoting Healthy Digestion

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- Supporting a Healthy Immune System

- Supports Healthy Joints

- Promoting the absorption of nutrients by intenstines

Choose Herbal Secrets Turmeric Curcumin with Bioperine supplement that makes benefiting from Turmeric Curcumin and Bioperine as easy as taking one capsule per day!

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Thanks Sebsgram

Yes, I read those info on Amazon but didn't quite understand what made up the 1500mg capsule. Thanks anyway.

I was looking for the manufacturer website & like to communicate with them.

Seok

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Yes, Imbruvica will cause fatigue and joint pain. I have been experiencing the fatigue since I started it last year. My activity level has dropped but it comes and goes.

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Same here.

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Yes, affirmative. The Ibrutinib does its job but rapid fatigue and walking like a drunk appear to be unpleasant side effects.

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If you are having walking/gate problems this needs to be discussed with your doctor immediately... it needs to be assessed as to causation.

~chris

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Thanks Clicanada. You are obviously a health professional.

I am an 83 y.o. Australian male with CLL for which I'm treated with Ibrutinib. Also had an atrial Fibrillation last December and taking blood thinners for same.

I've just Googled my gait problems and read of the multiple possible causes. I see my oncologist next week and will discuss. Also my GP the week after.

Again, thanks for your advice.

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I'm a 19 year CLL patient, who had bleeding issues and A.fib on ibrutinib and Xarelto for 3 months... currently on Zydelig (idelalisib) and rituxan...with very few side effects if any...

Glad you are addressing this...

~chris

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Thank you Chris.

I've printed a hard copy of your response and show my oncologist next week.

Will let you know his response I due course.

Kind regards.

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I have lost the muscle integrity in my legs as well. To the pint I cannot climb a simple few stairs.

I have been looking to purchase a motor home. Getting up the steps is a real challenge. This is not good. I do all kinds of leg exercises including indoor rowing. No relief yet. Could be a deal breaker.

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I am in the midst of this unpleasant side effect after being on ibrutinib for 6 mos. Muscle pain and weakness to the point of interfering with my activity level. I'm hoping it subsides as happened for some, because my labs are improving by leaps and bounds.

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Thankyou for all your feedback. Wishing you all strength in the coming sunshine ☀️

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I. have chronic lymphocytic leukemia with some type of depletion. I have been on Inbruvica for 1 1/2 years. My white count is almost normal, yet within the last 6 months I started having terrible joint pain and tingling of my feet with increased bruising. When I walk even 30 minutes it is really bad. I have read up on the side effects and these are some of them but you are told they may go away. They haven't yet. I intend to discuss them with my oncologist next week to see if there is an alternative therapy or solution for this.

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I do hope a discussion with your oncologist helps. Sounds like Ib is doing its job - just need to sort out the pesky side effects. Wishing you all the best....let us know if you find a solution.....

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