How to manage increased diabetes on ibrutinib? - CLL Support

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How to manage increased diabetes on ibrutinib?

RituBhatnagar profile image
14 Replies

My dad 73 years old started with Ibrutininb treatment for relapsed CLL on 20 september after 10 days the sugar levels are going very high. Today fasting was 326 mg/dl (normal levels are 80 to 120). Though overall improvement is seen in him but diabetes is remaining very high how to manage it? He takes insulin and lanctus after meals (afternoon and at night)

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RituBhatnagar profile image
RituBhatnagar
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14 Replies
AnneHill profile image
AnneHill

I think you need the experts to sort this out as it needs to be managed as quickly as possible.

You may know who is the best person to deal with this. I would get in touch with the oncology helpline first and also whoever treats your Dads diabetes.

Ibrutinib is a wonderful drug but it does have side effects for some. Diabetes can be dangerous and needs help.

Anne uk

RituBhatnagar profile image
RituBhatnagar in reply to AnneHill

Thank you for your kind reply.

I wish to understand does this side effect get managed by adjusting dose of insulin or will we have to stop ibrutinib?

AnneHill profile image
AnneHill in reply to RituBhatnagar

I cant answer that which is why you need help. They may be able to monitor the sugar levels and treatment. Hopefully they can do that without stopping the treatment.

They may have come across this before. I hope you get it sorted out, Anne uk

country76 profile image
country76

I am sorry to hear about your father's increase of blood sugars.

My blood sugars were borderline and Ibrutinib brought them to normal.

RituBhatnagar profile image
RituBhatnagar in reply to country76

Yes i have read the same, that ibrutinib helps in normalizing the sugar level. Though we have seen a doc yesterday and he has suggested to start metformin oral tabs too. We are kind of reluctant in using that as it causes acidity and reduces apetite.

RituBhatnagar profile image
RituBhatnagar in reply to country76

My dad has been prescribed entecavir 0.5 mg as well daily once. Can this be the cause for this high sugar levels?

RituBhatnagar profile image
RituBhatnagar

My dad has been prescribed entecavir 0.5 mg as well daily once. Can this be the cause for this high sugar levels?

Newdawn profile image
NewdawnAdministrator

Hi Ritu,

I’m sorry to hear that your dad’s blood glucose levels are elevating but please don’t stop the Ibrutinib without good medical advice. Ibrutinib caused my glucose levels to drop and normalise. Since stopping ibrutinib my blood glucose has elevated significantly.

This is an issue for an endocrinologist or haematologist. I am wondering whether the entecavir could be the likely culprit because there apparently is an association (not a significant one however), that cites high blood sugar as a side effect of this medication.

Please discuss this issue as soon as possible with your father’s specialist in the hope a solution can be found. It may take an endocrinologist more expert in managing diabetes for this.

Best wishes,

Newdawn

RituBhatnagar profile image
RituBhatnagar in reply to Newdawn

Thank you so so much for this reply. It gives me hope. My question is that today on diabetologist advice we have started glyciphase 500 mg after lunch. Since then is feeling gas and acidity bcz of which he is losing courage to take ibrutinib. He is very adamant in skipping the ibrutinib right now citing that it's night and he is a bit afraid etc. So can we skip just today's dose?

Newdawn profile image
NewdawnAdministrator in reply to RituBhatnagar

Obviously I can’t give that kind of advice Ritu but he really shouldn’t be skipping the Ibrutinib especially as he’s been on it for such a short time. So many of these diabetic medications can cause gastric issues which is why I don’t take metformin but I never missed an Ibrutinib tablet and as a relapsed patient, they are essential for your dad. I appreciate the interaction of many meds cause real problems and high sugar can be very challenging.

Make sure his doctors know of the gastric issues. Also, with a waking level of 326 (18.1), keep a watch for ketones. Hopefully he has a glucose meter that displays those.

Best wishes,

Newdawn

RituBhatnagar profile image
RituBhatnagar in reply to Newdawn

Tons of thanks! You will not be able to imagine the feeling of relaxation right now. I come from a small town and medical help here is not that great. Moreover the oncologist is not very keen in listening to the problems we are facing moreover it's late at night already there is nobody to guide. Thanks to this website and especially Newdawn we will be able to take a decision now.

Many thanks😊

Newdawn profile image
NewdawnAdministrator in reply to RituBhatnagar

You’re very welcome Ritu and as I’ve said in my pm, I’m wishing you all the best in helping your father with these issues.

Newdawn

RituBhatnagar profile image
RituBhatnagar

Update: There is some improvement in sugar levels now. There has been a drastic change in eating habits like we are giving veg soup twice, salad much and no eating outside. We did see an endocrinologist a very understanding man unlike our oncologist, he was very patient and carefully listened to our concerns, we were adviced a few tests like CBC, lft, tsh, vit b12, vit d,serum creatinine, lipid profile, hba1c.

CBC had lymphocytes percent high and wbc at 13k, tsh suggested hypothyroidism which again has been related to ibrutinib. Higher levels of sugar can be related to entecavir.

Once again thanks Newdawn for suggesting me and comforting me the other day.. I was very very nervous and couldn't understand what to do.

Thank you.

Newdawn profile image
NewdawnAdministrator in reply to RituBhatnagar

Very pleased to hear of this improvement Ritu 😊

Best wishes,

Newdawn

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