severe Leg Muscle pain and weakness Using Ibru... - CLL Support

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severe Leg Muscle pain and weakness Using Ibrutinib daily.... want to try every other day, thoughts ?

fish61
fish61
55 Replies

81 years old , in decent shape, (try to play pickle ball 3 times a week,) in 2012 diagnosed with CLL was put on trial of 420 mg Ibrutinib( blessing) until 2016...in 2017 good remission , taken off Ibrutinib ....... relapse in Jan 2019 put on Ibrutinib 140 mg daily... problem now... leg muscles ,(both legs ) pain and weakness ( no pickle ball) ... so great I stopped Ibrutinib 48 hours ago and now have no muscle pain or weakness...Oncologist at MD Anderson says its is okay but when the CLL comes back the Ibrutinib may not work ... scary decision to be made... I am thinking about using Ibrutinib every other day .. sound reasonable ?

55 Replies
oldestnewest
BCTexas

Hi,

I have been on IB going on two years now. It has helped me a lot. I also experienced muscle pain and cramps. I drink lots of water and it seems to help.

Hope your muscle pain gets better.

Cheers!

BC

2 likes
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fish61
fish61
in reply to BCTexas

Thanks BC... I noticed that my water consumption was very low in the past few weeks , does the water completely rid you of the aches?

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BCTexas
BCTexas
in reply to fish61

Overtime my muscle aches went away. I drink 6-8 bottles of water a day. You should try to drink more water while you're on Ibrutinib and see if it helps.

3 likes
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fish61
fish61
in reply to BCTexas

BC I don’t have 8 bottles in 2 days , may be the problem...

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joanne17
joanne17
in reply to fish61

I've been on IB going on 2 years. I force myself to drink 8 glasses of water a day. "Just do it" Staying hydrated is very important. Water also flushes out the"bad" stuff.

6 likes
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Panz

Have you tried Biofreeze? They have two different strengths out now in the roll on style...not sure on the other forms.

Panz 🙏☘️💕😍

1 like
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fish61
fish61
in reply to Panz

will look it up !

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Panz
Panz
in reply to fish61

Walmart carries it as do most pharmacies and so does the internet. I run onto the stronger strength at where I have PT. It is the 5% rather then the 4%. The 4% has worked miracles for me. Great for arthritis too!!! Panz 🙏☘️😍💕

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fish61
fish61
in reply to Panz

thanks Panz

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Wroxham
Wroxham
in reply to Panz

It works!

Sue

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sllincolorado

Would ask your MD Anderson doc if they can get you on acalabrutinib. Not sure who your doc is. Dr. Nitin Jain from MDA has done plenty of research on acalabrutninb so he might be a good resource. If they say they don't think your medicare/insurance will cover it - ask them to try anyway. Mine was approved (private insurance not yet on medicare).

1 like
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AussieNeil
AussieNeilAdministrator
in reply to sllincolorado

I would strongly recommend you try this route of switching to Acalabrutinib for two reasons. Going to alternate days of Ibrutinib in what is already a quite low dose, means your CLL inhibition will reduce, increasing the risk of Ibrutinib resistance developing. Acalabrutinib doesn't appear to have the arthralgia side effect.

Note that Acalabrutinib has a shorter half life than Ibrutinib, so you need to take it twice a day.

You might also ask whether adding Venetoclax might eventually get you off all CLL medication.

Neil

8 likes
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fish61
fish61
in reply to AussieNeil

Wow ... good idea ... seeing Dr Wierda in a few weeks ... didn’t know what you are suggesting was an alternative to Ibrutinib ... IB was in trial when I started and I have closed my mind to all medications because IB worked so well , thanks for the input .. fish 61

1 like
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AussieNeil
AussieNeilAdministrator
in reply to fish61

There are a few second generation versions of Ibrutinib now in clinical trials, that are better targetted and so appear to have less side effects. Acalabrutinib has been FDA approved for Mantle Cell Lymphoma, so can be prescribed off-label for CLL. Zanubrutinib is only available via a clinical trial.

Neil

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fish61
fish61
in reply to AussieNeil

Going to take me all night to digest your 2 replies and how to present it to Dr Bill so as to not offend him , tactfullness isn’t not my strong suit !

But you are giving me choices I didn’t know existed and they make sooo much sense. MDA is a great cancer center , and is responsible for me being alive ... They individually are great mds ... but for some reason they tend to not deal in choices.. they get the “generic” job done .... love em and going to figure out how to be tactful ... thanks for your input Aussie .... if you come up with anything else please send to me ... fish 61

5 likes
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BluMts
BluMts
in reply to AussieNeil

NEIL, as a matter of interest, are any of the 2nd generation IB type meds available in Australia? Like Aclabrutinib?

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AussieNeil
AussieNeilAdministrator
in reply to BluMts

Both Acalabrutinib and Zanubrutinib have been and may possibly be available via clinical trials. One Acalabrutinib trial for treatment naive patients is near closing.

Neil

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BluMts
BluMts
in reply to AussieNeil

Thanks Neil, seems many countries have these drugs being tested and some like the US are allowing Doctors to prescribe. I asked as we never never hear of them in the UK. As far as I know, there are no trials in UK on Aclabrutinib. Would someone say if there are? And if not... Why?

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AussieNeil
AussieNeilAdministrator
in reply to BluMts

This Acalabrutinib Trial for treatment naive patients is available in Canterbury, United Kingdom, CT1 3NG

clinicaltrials.gov/ct2/show...

There are 3 arms to which participants are randomly assigned; the control chemoimmunotherapy arm of BR or FCR, and two non-chemo arms, Acalabrutinib and Venetoclax or Acalabrutinib and Venetoclax and Obinutuzumab.

Neil

2 likes
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fish61
fish61
in reply to AussieNeil

Unbelieveable, I stopped the Ibrutinib cold and after 3 days no leg pain .. took 140 mg yesterday with copious amounts of water but around 3 pm the leg pain came back big time ....texted oncologist and out of the blue he switched me to Acalabrutinib . Thanks Aussie Neil , I will have a painless weekend .... More more more ,,,, i was scheduled for a prostate biopsy in Dec but from the peripheral info I received in reply’s I found that Ibrutinib can cause a bloody discharge , had a psa test rerun and the test showed a drop in the count ( 3.3 now , was 4.8)... my point is No matter how insignificant your reply’s may seem .. send them as they help people like me that graduated with a 1.8 gpa.... lotta common sense but a slow learner .

1 like
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fish61

Thanks sllin

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starsafta

Taking Ibrutinib every other day does not sound like a good idea to me. I would ask your CLL doctor about possibilities before taking that step. The drug is gone from your body within a few hours, so you would be introducing a yo-yo rhythm that may interfere with attacking CLL cells.

Does your pain feel muscular? Could it be leg cramps, which can be painful and common with Ibrutinib? Have you tried to take magnesium, which helps? I use chewable magnesium, 400 mg at a time.

Dehydration can also cause cramping. As others have said, drinking 8-10 glasses of water daily is a must with this drug.

You're being treated at a Center with leading experts and lots of experience. They would be the best people to contact about any reactions or changes to your meds.

4 likes
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fish61
fish61
in reply to starsafta

Thanks for the input

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larrymarion

i had a lot of leg cramps after going on ibrutinib. The two recommendations above--drink more water and take magnesium pills--are both effective and helped me a lot. Talk to your doc about the dose situation--reducing ibrutinib can be dangerous, as AussieNeil noted.

also talk to your doc about acalabrutinib--two years ago my hemoc tested my insurance company by ordering calquence and the insurance company agreed. since the drug is about 6-8 weeks away from FDA approval for CLL, you shouldn't have a problem getting it approved. Also note that the manufacturer of calquence, astrazeneca, has told investment analysts that 75% of the Rx for calquence were not for Mantle cell patients. In other words, most of the prescribing was for CLL patients.

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fish61
fish61
in reply to larrymarion

I stopped the Ibrutinib 3 days ago and the leg aches that were constant ... stopped yesterday ........ I will probably restart the Ibrutinib with copious amounts of water today.....trying to get appt with Dr Bill ASAP to discuss this matter ... will keep you informed .. thanks Fish 61

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larrymarion
larrymarion
in reply to fish61

another approach, which many docs disagree with but others support, is reduced dose. Muscle and leg cramps while on ibrutinib are very much dose related--if you've been taking the standard 420 mb/day, dropping to 280 mg/day has been shown to reduce/eliminate the pain. However, there are risks of developing ibrutinib resistance or otherwise ruining the BTK inhibition at a lower dose. If switching to acalabrutinib isn't an option then definitely discuss this approach with Dr. W.

If you feel like a lab rat due to the uncertainty and experimental nature of CLL treatments these days, welcome to the club. ;-)

1 like
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fish61
fish61
in reply to larrymarion

Not a lab rat but I have developed a great appetite for cheese...is that a warning sign ? Ha ha

1 like
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larrymarion
larrymarion
in reply to fish61

actually, so have i. some discussions of increased appetite and fat/cheese gravings while on ibrutinib are out there.

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BluMts
BluMts
in reply to fish61

Glad you've taken the advice about lots of water, but have you thought about the advice also given about taking extra magnesium? I ask as it is worth considering.

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fish61
fish61
in reply to BluMts

Already take 400 mg twice daily

1 like
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wmay13241

Try rubbing in TheraWorx foam for the leg cramps - it is available in most drug stores (CVS, RiteAid, Walgreens). Also what is your Magnesium level?

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fish61
fish61
in reply to wmay13241

I take 400 mg of magnesium daily to offset Entresto ... thanks

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tootsie2

I have also been experiencing horrible right leg pain and making it difficult to walk. I am going to my primary Doctor today after six weeks of this pain. I never once thought it could be the meds and this will give him something to go on when he tries to figure out how to help me. Thank you for posting this today, Could you tell me what your Doctor has said about your condition, Lets both kick this. OK

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fish61
fish61
in reply to tootsie2

Will post my progress tootsie 2, hoping to see md next week

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fish61
fish61
in reply to tootsie2

See my post for today ... in essence ... I am off Ibrutinibafter 3 days off it went back on it for a day and had big time leg pain... now on acalbrutinib ... will keep you informed once I actually start it .

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oldguy68

I've been reading some of the comments here I don't know who of them are oncologist but suggestion to stop taking or cutting down on a drug like Ibrutinib, I would really recommend against that. Take this issue up with your oncologist. Just an opinion as I am not a doctor, and have been on a Ibrutinib for about a year.

2 likes
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fish61
fish61
in reply to oldguy68

Hey old guy , since all my blood is in sync and the nodes are controlled , oncologist wanted me to take IBRUTINIB as a maintenance drug , but he also said it is up to me , not 100% necessary ....when I. Asked what he would recommend if I were his father , he told me to take it as there might be consequences ... hence o came up with the idea of taking it every other day .... which I am NOT going to do after listening to you guys sensible response ...we need more common sense in medicine ..

1 like
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oldguy68
oldguy68
in reply to fish61

Ok. You're dealing with your oncologist. That's really something I've never heard of, although I do not read all of the posts on this site so maybe other people are in the same situation. Take it if you want, or not, oh well. 🤔

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fish61
fish61
in reply to oldguy68

I couldn’t believe his response either , “ the CLL will come back” a maintenance dose may keep it away longer .. I guess the reality is that with medicine today we are going to have to live with it until a new treatment is developed . 7 years ago there was not the hope we have today ... have a good day ..

1 like
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oldguy68
oldguy68
in reply to fish61

Yeah my attitude is cancer drug is not an aspirin or Tums. I am perplexed that a doctor would say take it or not.

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hazelton

If you are an athlete you may already have some dehydration. Taking Ibrutinib requires increasing your fluid intake so maybe monitor how much fluid intake you have. Using a heating pad at night helps me.

1 like
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fish61
fish61
in reply to hazelton

Prior to posting here I had no idea about copious amounts of water , going to start drinking today ..thanks

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Wilmafl

I also have severe muscle pain and weakness in my legs. I have only been on IB for 5 weeks. The pain and weakness is keeping me from doing much of anything. A lot of the other side effects I had, have eased up some. I'm hoping this does also. I know how you feel. I am 56. Wish you well.

1 like
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fish61
fish61
in reply to Wilmafl

Thanks for the input

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Trilpub

I, too, found IB helped my CLL immensely, but I developed the cramps and joint pain for a year. Started on 420 and went down to 140 and still had sore ankle. Drank plenty of water. Then started, via a recommendation, on a combination pill of calcium, magnesium and vitamin D and in about a month the pain was gone.

2 likes
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fish61
fish61
in reply to Trilpub

Calcium , mag and vitamin D all in line

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skunkbay53

Water and Magnesium Glycinate helped my husband

2 likes
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fish61
fish61
in reply to skunkbay53

Thanks skunkbay

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F550

You sound similar to me--same age, about the same level of physical activity. I have been on IB for 10 months, and had a number of side effects, including bad leg cramps at night. One specialist told me that the main reason her patients quit IB is cramping. She suggested reducing my dose, which I have done--280mg instead of 420 per day. It has helped, but I also drink at least two liters of water a day, use Theraworx at bed time, take at least 500 mg of magnesium and stretch before bed. I have some cramping at night, wake up sore, but have not been incapacitated.

Specialist also mention switch to another drug.

Good luck,

Mike

1 like
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fish61
fish61
in reply to F550

I use the Magnesium , and stretch in the AM .... I use CBD oil evenings before bed bbbuuuttt I today started drinking water ,, previously only drank about a quart a day ... thanks for the input .

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Varney

Hi fish61,

In addition to increasing your water consumption and taking magnesium, you may want to look at the foods that inhibit the enzyme CYP3A4 which metabolizes the Ibrutinib. You may have a metabolism problem rather then Ibrutinib dosage problem.

Aged cheeses are one of the culprits that causes inhibition of CYP3A4.

I would do a dietary food group check and see if you if you are eating foods that tend to affect CYP3A4. If you are, try avoiding them and see if your cramping subsides. Simple enough.

Varney (also a Pickleball player at 79)

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fish61

Italian so I eat a lot of cheese , thanks for the input ...

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Varney

I am Italian also. So it is a hard decision, but I hate leg cramps in the middle of the night which were happening to me. Not having them anymore & still taking 420mg. In fact the rash on my leg is gone since I have watching what I eat. Good luck to you

V

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fish61
fish61
in reply to Varney

Thanks

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Varney

Wishing you the very best and may all your “dinks” be winners.

V

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