In another forum a patient questioned whether the policy against quinine use for leg cramping had changed from when she was seen at NIH (National Institutes of Health) where quinine was not recommended. I was surprised to find a recent recommendation for use of quinine in the context of Ibrutinib Therapy by a CLL specialist. I highly recommend the article in general but caution not to use Dr. Brown’s recommendation without a discussion with one’s own treating physician. Below is my reply to that questioning patient.
"I do not know if the policy of quinine use has changed across the board in regard to all CLL specialists. Keeping in mind that there is a condition of quinine induced Thrombocytopenia, I would have a serious discussion with my Onc before trying to treat arthralgia and cramping with Quinine. That stated and with no mention of quinine related platelet issues here is what one CLL specialist has to say.
In a recent Journal Blood article by Dr. Jennifer Brown (CLL specialist Dana Farber) bloodjournal.org/content/13... She states regarding the pain/cramping side effects from Ibrutinib:
"These aches often abate without major intervention. Magnesium supplements or tonic water containing quinine can be helpful.” This is a series of “How I Treat” articles that are full of very good information and highly recommended for not only our own education but particularly for those patients being treated in a community setting as opposed to an academic center and are facing issues or questions.
The counter argument for caution in quinine use is examined in this Blood article by Daniel Bougie et al. titled "Mechanism of quinine-dependent monoclonal antibody binding to platelet glycoprotein IIb/IIIa” bloodjournal.org/content/12... This paper is dense and my purpose is to highlight the possibility that quinine use should be cautiously approached with a discussion between the patient and Oncologist.
"Our findings raise interesting questions about the mechanism(s) by which antibodies of the type that cause thrombocytopenia in patients sensitive to quinine and other drugs are induced.”
Ibrutinib is a great drug for many of us if we can work around the side effects. Hope this helps.
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Hi I am on the Flair trial on the Ibrutinib and rituximab arm. I drank tonic water socially prior to starting the treatment so asked my haemotologist for advice. He gave a definite no to the use of quinine so the tonic water has stopped. I haven’t had any problems so far with leg cramps. Thanks for sharing this information.
At the recommendation of my clinical trial team at Dana Farber, I tried a small amount of tonic water with quinine to try to mitigate roving, aching joints. For me there seemed to be no adverse effects, but also it didn't seem to help much, so I went back to water as my go to drink.
I posted this on another forum with a prominent CLL specialist Dr. Rick Furman. He replied that his view is that use of quinine is OK if it works for the patient. To partially quote him - "... quinine induced thrombocytopenia is quite rare and idiosyncratic." Rick Furman has extensive experience with Ibrutinib in his patients. He did not mention IF any patients had actually been helped by quinine use.
If you were one of the rare/idiosyncratic patients I know of no test or markers to identify you as such so the statistical game of chance goes on.
I am not taking sides on this issue - just a messenger
I have had great luck drinking "Pickle juice" to relieve cramps. It is available on Amazon. When they are severe a couple of ibuprofen relieve them in a few minutes. Only things that work for me.
Stay away from quinine if you have platelet issues, it can cause your platelet numbers to bomb. I know for a fact because I learned the hard way. My FCR was delayed for awhile because of a sudden decrease in platelets. My Dr was puzzled as all had been going so well then we hit on the tonic water. He said by all means steer clear. I switched to pickle juice with good success.
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