Withdrawl symptoms

[mickimauser11]

What experiences do you have with different drugs I know Ibrutinib can cause this once you are off the drug. Would like some Feedback

[lankisterguy Volunteer]

Hi mickimauser11,-

That is a pretty broad question with no context. Unfortunately you haven't completed your profile, so it is not easy to understand your location, health system and past treatments.

You may want to provide a summary of your treatments in the area where you say "Still taking Venetoclax" healthunlocked.com/user/mic...

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You could copy & paste the details from your posting 29 days ago healthunlocked.com/cllsuppo...

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It appears you are in the USA, probably New York and were in a "triple combo" trial and then used Ibrutinib to treat Occular Lymphoma.

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The only "withdrawal" issue I recall with Ibrutinb is for people that have been on it for a short time ( e.g. 2 years or less) and had large nodes which reappear in a "tumor flare" when they pause Ibrutinib.

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I have had 4 different targeted drugs ( Rituximab/Rituxan, Idelalisib/Zydelig, Ibrutinib/Imbruvica, Venetoclax/ Venclexta) plus Allopurinol, Bactrim TMP/SMX, and Atovaquone and never had withdrawl symptoms from stopping any of them.

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Len

[mickimauser11 in reply to lankisterguy]

No Im in Germany supporting Other patients still on Venetoclax but another patient has Problems after discontinuing Acalabrutinib but I only read an article about withdrawl symptoms folliowing discontinuation of Ibrutinib with Waldenström and a friend said someone read an article on this Forum about withdrawl symptoms after Acalabrutinib but cant find anything I also would be interested If anybody had Problems after stopping Venetoclax

[sllincolorado in reply to mickimauser11]

Hi Micki. Not sure about the reasons or details of the person you know who has stopped acalabrutinib. When I stopped acalabrutinib my nodes "exploded" within 48-72 hours. I was in massive pain. Nodes grew where they had not before. I could not function due to the pain. My oxygen saturation dropped to mid 80s. My body was in crisis. It got worse each day and did not stop until (new) treatment was started.

What info can I provide to you that would assist this other person that is having issues? Regardless, I would say that if they are in pain, the nodes are growing rapidly, they are having breathing/thinking issues at all - they need to contact their doctor asap. Do not delay. Also, it is unlikely that nodes growing in this circumstance is a richter's transformation - we have threads about this false richter's situation. Let me know if you need info on that.

[mickimauser11 in reply to sllincolorado]

Two patients dont tolerate neirher Ibrutinib nor Acalabrutinib and feel miserable one however has complex karyotype I had withdrawl symptoms after my first treatment which included Ibrutinib too

[lankisterguy Volunteer in reply to mickimauser11]

Here are the 2 past postings that used the word "withdrawl" : healthunlocked.com/cllsuppo...

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I'm a phonetic speller, and when I used the correct spelling (my bad): withdrawal, I get 36 postings that have much more info.

healthunlocked.com/cllsuppo...

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The internal search feature inside HealthUnlocked does not work as well as Google, so if you want to see all the UnLocked posts that have specific terms you can use this string in a standard Google search box:

site:healthunlocked.com/cllsupport acalabrutinib withdrawal

and get a list like this:

google.com/search?q=site%3A...

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or for Venetoclax use this string in a Google search:

site:healthunlocked.com/cllsupport Venetoclax withdrawal

to yield:

google.com/search?q=site%3A...

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Len

[mickimauser11 in reply to lankisterguy]

Thanke you

[AussieNeil Partner Administrator]

Here is post about withdrawal symptoms from Ibrutinib. healthunlocked.com/cllsuppo...

I would expect this would be the case with any BTKi drug.

Neil

[shazie]

I just saw your post. It is very uncommon but can happen as it happened to me twice when I paused Imbruvica for different procedures. Not much study on this subject because there haven’t been many complaints from patients. They recommend Prednisone (steroid) usually twice daily or as needed. Either 5 mg or 10 mg depending on how severe the withdrawal reactions are. I had fever, chills and hive.

[mickimauser11 in reply to shazie]

There is a study saying it happens with Btk and I had withdrawl symptoms too in 2018 I think most patients dont know because they also take other meds and it is only time limited anyway