Venetoclax and blood sugar

[WittyApricot]

hi everyone, I have been on “V” since the end of last August. In the last five months, I’ve been experiencing severe hypoglycemic attacks: however, my blood sugar is in dropping below 70.

my doctor (endocrinologist, who im not happy with) put a blood sugar monitor on me for a week and said no worries. You’re not dropping below 70, but your new normal is now 120’s and 30s fasting. How is that possible when eating same if not better diet since being on “V”?

Mind you a year ago, my normal was 74 to 94 fasting.

So currently when my blood sugar drops to 90’s to 100’s, that is when I am having the hypoglycemia attacks. I mean full out cold sweats, confusion, shaking and tiredness,

I saw that hyperglycemia is a side effect in 67% of patients in “V”. My docs are ignoring my concerns. About 1 1/2 years ago, I starting showing antibodies for type 1 diabetes, but had not fully developed a blood sugar issue.

My CLL specialist is out on maternity leave, and her team doesn’t know me as well, and says there may be other causes. The only difference is “V”.

Has anyone experienced this and what are

[lankisterguy Volunteer]

Hi WittyApricot,

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Here is the list of 8 times that Hypoglycemia was mentioned in previous posts. You can change the search term, but adding Venetoclax or blood sugar gives a list of several thousand.

healthunlocked.com/cllsuppo...

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Len

[Classicaljazz]

It sounds like you might be Stage 1 or Stage 2 of type 1 diabetes? If so, perhaps find out more from your endocrinologist and ask about the possibility of a 14-day teplizumab (Tzield) therapy to delay progression to stage 3 type 1 diabetes for several years. This therapy was recently FDA approved in 2022 and given in outpatient infusion centers.

See: Quinn LM, Swaby R, Tatovic D, Narendran P, Besser REJ, Dayan CM. What does the licensing of teplizumab mean for diabetes care? Diabetes Obes Metab. 2023;1‐7. doi:10.1111/dom.15071

Novograd, J., & Frishman, W. H. (2023). Teplizumab Therapy to Delay the Onset of Type 1 Diabetes. Cardiology in Review, 10.1097/CRD.0000000000000563. Advance online publication. doi.org/10.1097/CRD.0000000...

Also, if you are already taking medication to lower your blood pressure anyway, ask your endocrinologist about possibly using verapamil-- See "Top Type 1 Diabetes Advance 2: A Blood Pressure Drug Preserves Beta Cell Function " at: jdrf.org/blog/2023/06/12/to...

[Flute117 in reply to Classicaljazz]

Verapamil is a CYP3A4 inhibitor and affects the levels of Venetoclax in the body. I went off it before starting Venetoclax.

[WittyApricot in reply to Classicaljazz]

I am truly nervous about this bc my endocrinologist doesn’t seem to think it is a big deal, but of course, she is not experiencing it. Thank you for the information about teplizumab.

[CoachVera55]

Wow there’s so many out of target issues besides the ‘normal side effects’ & the disease itself🤦🏽‍♀️ It just seems that time limited therapy may be the way to go! Would you consider ‘V & O’??? Besides that, an Endocrinologist definitely needs to be onboard with your case. Geez Louise 🥺

[WittyApricot in reply to CoachVera55]

I have considered “V &O”, but doc was not for it due to my medical history or severe anaphylaxis initially. I see my CLL specialist in September and will discuss more thoroughly the next steps.