Excruciating back pain

[Maloncll]

My wife have been in imbruvica for 3 months in the 420mg dose. She weighs 130 lbs and it was working fine. All of a sudden she got this excruciating back pain that literally incapacitated her. She has been of the prescription for 8 days and still have some of the effects . Does this go away? Should she start agai in a lower dose?

[Bikram21]

Hi, I don’t know anything about this,but I noticed in the right hand column under related post there is more information on this topic.

[Maloncll in reply to Bikram21]

Tks!

[lankisterguy Volunteer]

Hi Maloncll,-

As you read the links in the "Related Posts" box on this page, you may learn that back pain can be caused by many problems unrelated to CLL. Just because the two happened at similar times, does not mean they are related.

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I've had back muscle pain / spasms most of my adult life, but started having nerve pinch pain a few years after my CLL diagnosis. I went through the normal sequence of having MRI and CT scans, Physical Therapy prescribed by a Physiatrist aapmr.org/about-physiatry/a... . Then more scans, and eventually two operations - one to create more space around my main spinal nerve, and the 2nd - 2 years later to create more space for a branching nerve from my back to my legs.

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Diagnosing the cause of back pain is complex, and I encourage you to engage an expert team to start on the process. Pills and surgery are not always the best answer. Ibrutinib / Imbruvica may not be related to the back pain.

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Here is a link to one of many video presentations by the team of doctors at Weill Cornell NY Presbyterian that treated me:

We are delighted to announce our next Spine Time session. The webinar will be held Wednesday, May 5, 2021, at 5 pm ET. Dr. Roger Härtl (Neurosurgery) will be hosting the session, which will feature Dr. Jaspal Ricky Singh (Rehabilitation Medicine) and Dr. Joshua Weaver (Neurology) on "Wine and Spine: From indulging to channel surfing, how your daily habits affect your back."

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Click here to register for this webinar cvent.com/e.aspx?1G,P1,93e7...

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If you miss this webinar, or want to catch up on previous sessions, you can always view the videos on our YouTube channel. youtube.com/playlist?list=P...

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Len

[Maloncll in reply to lankisterguy]

Tks

[Smith123456]

i had rotating joint and back pains for several months.they gradually subsided i have now been on imbruvica for 3 years

[JigFettler Volunteer]

I was about to reply and lankisterguy has already very eloquently described the important issues. It's not about Imbuvica dose, it's about getting a diagnosis for the back pain. Probably more likely not related. And yes you need to see your Doc. It's is conceivable that your Family Dr is going to be a better place to start.

But check in with the Haematologist too.

Jig

[Zia2]

After starting Ibrutinib I had cramps that hurt so bad I couldn’t walk on my left foot. It just froze up. Some were awful and others not as bad. They never went away the 10 months I was on it. I stopped it for 8 days recently and it’s amazing how much better I feel. (I know that would be short-lived). I’ve read many on here write cramps were a side effect. Hope she feels better soon.

[Maloncll in reply to Zia2]

Its confusing! Some say not related and others with different opinions. She has been off now for 6 days and feels somewhat better. Pain is bearable. Dr appointment in 4 days🤷🏻‍♂️

[Zia2 in reply to Maloncll]

It is!! Hopefully more will write about their experiences soon and her doc can help you two sort through it all.

[Maloncll in reply to Zia2]

Tks

[sllincolorado]

Is the pain only in her back? Any pain in other places such as knees, fingers, etc.?

[Maloncll in reply to sllincolorado]

Sometimes one knee

[sllincolorado in reply to Maloncll]

If it is improving off the ibrutinib and there are other painful places my completely non-medical guess is that the pain is from the drug. If you are in the US ask the doc about switching to acalabrutinib which is a btk inhibitor like ibrutinib but usually with fewer side effects. Like Zia2 , I was in so much pain on ibrutinib that I could not function. I switched to acala and had no side effects.

[Maloncll]

Tks wow! Will do. Im in Puerto Rico but full medical equivalent including medidare

[cartwheels]

All I can say is I suffered back pain within 3 months of ibrutunib tried everything to ease it in the end I sent for 10% CBD oil which took a month to take effect but 4 years on I'm still on ibrutunib doing fine ,yes I still have back issues but nowhere near as bad as those first 9 months and I live with it I have times where I'm completely fine and times when I come home from work and need a hot bath and then lay on my back stretcher where after a few mins I can feel the tightness slip away ,I do believe there is something between ibrutunib and lower back pain as I never had any troubles with my back prior to ibrutunib but I still take full dose as it's the lesser of two evils

[stevesmith1964]

Hi, I reported a similar side effect to my doctor, he stopped my ibrutinib immediately, referred me to a rheumatologist and scheduled me to start acalaubrutinib in 2 weeks

[Sergi]

My wife was on imbruvica for 9 months and also experienced horrific back pains . She went from 3 to 2 to 1 pill a day and she was better and still great results from the drug .

Eventually, the pain came back and she had to stop the treatment.

After a year , the wbc started to go up again and she’s about to start acalabrutinib hoping for less side effects.

[mrsjsmith in reply to Sergi]

Sergi,I do hope your wife has a successful time with her treatment with Acalabrutinib.

Regards

Colette

[yccymj]

My father-in-law was on chemo due to lymphoma when he felt excruciating pain on his lower back. He didn’t had any fall or knocks. Can’t move an inch without feeling pain. Doctors checked everything but could not figure out. We took him for an XRay and they found there was a crack on his L2 lower spine. Could not explain how it happened but we got it fixed through a minor surgery and immediately solved the painful experience.

[Maloncll]

Tks

[blowinginthewind]

In a woman, it is important to scan the ovaries in the case of severe back pain. Even more so if you have CLL. I hope you get this sorted quickly and your wife is free from pain soon.

[Galah91]

Hello Maloncll and fellow back pain people,

spinal pain

muscular pain

cramps

cold extremities

I have been on ibrutinib since late June 2020 including pregabalin for pain choose a few months back to try other options because the pain relievers caused a constant gaga sensation in my head and heart did not agree with them.

I've done some research since and came across this technique I must say I've had a clinic in a past life holistic sports therapies, unfortunately I can't treat myself haha....

Back on track wrote to Dr Rahim a chiropractor in LA, they connected me with

gonstead.com/gonstead-syste...

Plus weekly or fortnightly massage would love to have daily however one needs dosh, sauna, hydro therapy, heat via hot water bottles on the area in my case it's the sacrum & shoulder zones, and attempt to stretch yes my body has become so rigid those toes will not meet me halfway!

Started dance classes a few days ago at 5;00 am samba salsa etc with a school via youtube and yes all in the comfort of my home have a tendency to lose my balance frequently. So let's loosen up our joints and stretch what will be muscle regain. And yes our muscle cells have a memory and tend to freeze at every pain, so it's a matter of retraining gently.

I hope these options help, have offered my kitchen meat cleavers to the massage therapist unfortunately he is somewhat reluctant he could get carried away with them. Yes he agrees the muscles have contracted excessively this becomes a vicious cycle, so be patient with oneself.

[Maloncll in reply to Galah91]

Tks

[AnneHill in reply to Galah91]

The pain you have listed is exactly the pain I have. I had pain before I began ibrutinib.

I am convinced that the ibrutinib has made the pain worse but it has worked at bringing my numbers back to normal levels.

The covid figures where I live are low and I am going to risk starting swimming at our local leisure centre.

I need to stretch my muscles out. If I cant improve my fitness and pain I will need to make a decision about asking for a different treatment.

I feel for those who have pain whilst being on ibrutinib. Anne uk

[Galah91 in reply to AnneHill]

Hello Anne,

Thank you for your response and remember to be gentle with yourself. If you developed the pain prior to ibrutinib then I'd seriously consider consulting a neurologist perhaps have an MRI / CT scan simply for peace of mind that those nerves are doing the correct job and not having a ragging party as mine tend to do.

🏊 enjoy

[michaelmac]

First , who took her off her imbruvica???,,,,, if it was not her Hematologist her Hema should be consulted.I had debilatating back two months or so after starting imbruvica ,, I did the Assumption and blamed the imbruvica,,, even though I have had back and neck issues all my live. So ,in consultation with my Hemo I stoped imbruvica. to see if that would help .... It did not. I stopped having pain because I was on pain med , but as soon as I cut out the pain meds my back started up again. I went back on imbruvica and started trying to get the pain under control nothing worked until I got around to foraminal steroid shots ,,, which I have now been on every three months for a year. I'm trying very hard to stay away from surgy!

Anyway ,,,I;m not saying your wife should follow my path,,, what I am saying is unlike mystery book ,,, somethimes there ARE coincidences,

I hope your wife gets her back problem under control and everything eslse health wise gets strainten out.

take care

Michael

[Maloncll in reply to michaelmac]

Tks

[Catnap7]

Hi... I’m a believer Ibrutinib follows a trail leading to your already present arthritic areas. For 2 years during Ibrutinib/V trial my L knee /hip gradually got more painful. It started up several days after I took my first 3 pills. Nothing was painful before that Then 3 months before the trial ended I got an X-ray. Doctor said I would be needing a knee and hip replacement. That didn’t surprise me as I had trashed my body dancing professionally and teaching a good part of my life.Well several days after my trial

was up and I stopped Ibrutinib

I NEVER had anymore pain. I think Ibrutinib seems to compound whatever arthritic condition you already own. It did for me anyway.

Catnap7

[Galah91 in reply to Catnap7]

Hello Catnip7, that sounds quite logical. My mind has been processing the same thought. Congratulations on the no more pain how relieving that is for you.

🤔 Each person's condition is to be considered separately, I, for one, lost control of my legs became wheelchair dependent until I could receive ibrutinib which has also helped against most of the neurological twitches. Without ibrutinib my condition would rapidly reverse. I'm training my limbs to walk longer distances as of a few months now although any working day beyond 4-6 hours is bearable until I arrive home then totally crash. Life is constant learning how to best deal with each bump, twitch and not over exerting one's self. (me)

[Blackbelt5]

I am too on the same dosage and my back pain substantially increased over the past 10 months as a result of the CLL and inbrutinib. My pain pills had to be doubled. Hope you feel better. Gary

[sllincolorado in reply to Blackbelt5]

Hi Gary. I am so sorry you are in pain and that your pain meds had to be doubled. Since you are in the US you should ask your doc if it would be a good idea to switch to acalabrutinib. If the pain is diminished you could decrease your pain meds which would likely be a good thing.

[Maloncll in reply to sllincolorado]

Good one. Tks

[Whiterockbc]

I got severe cramps in my butt while walking up hills and could barely walk. then I bent over one day and it felt like my lower back just snapped. I couldn’t move. My feet and thumbs would spasm randomly. I was on Imbruvica. I had every side effect! The doctor switched me to Calquence (Acalabruvica) All problems are gone after 2 months.

[Whiterockbc in reply to Whiterockbc]

I meant I was on ibrutinib !

[Maloncll in reply to Whiterockbc]

Tks

[lsutigers2018]

Sciatica runs in my family. I am 67. It has gotten so bad the last several years that I hope to get the injections that can last a year or so and start working