Polycythaemia Vera

After almost 4 years of treatment with hydroxycarbamide I switched to Jakavi in July. This has been a game changer with virtually all previous side effects gone and no new ones. However a routine blood test has revealed a sudden increase in blood sugar levels which are now well within diabetic levels. Has anyone else had this problem?

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Hi @Derek3 I wonder what your treatment team, specialist nurse possibly, says about your readings?
We are very complex individuals and it might/might not be connected to your Polycythaemia vera (PV)
I will copy your post to the Blood Cancer UK nurses for you @BloodCancerUK_Nurses
Please do let us know how you get on
Look after yourself and annoying as you seem so happy on the Jakavi.

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I’m glad that the new medication is working for you albeit the blood results.
Have you been told this may be a side effect of the medication?

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At the moment it seems to be a mystery. The blood sugar level has always been stable and it is a very sudden jump since the change of medication. The test is being repeated this week

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Hello again @Derek3, glad to read your swap from hydroxyurea to ruxolitinib has gone so well! I still take hydroxyurea and it suits me well, but I’m heartened by your experience of another medicine I could take.

Not experienced my blood sugar levels increase in blood test results. I do sometimes wonder if what I eat the day before my monthly CBCs can strongly affect their results, especially if I’ve stuffed my face with pudding! I’d say always check this sort of thing with your specialists.

Do please let us know how it goes!

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Derek3 I am also on Jakavi for Polycythaemia vera (PV). I am on it approx 3/4 months, I have had no increases in my blood sugars. Have you got any answers yet as whether it is connected to Jakavi. Curious as my two sisters are both type 2 diabetic. Glad to hear that otherwise it is working well for you. Best wishes. Liz59

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I have had another blood test today and now wait for the results

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Derek3 Best of luck with blood results. Best wishes. Liz59

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Dear @Derek3
Apologies for the late response. It is really good to hear that your previous side effects have resolved since you started taking Ruxolitinib.
Raised sugar levels are not a common side effect that is noted in the patient information here: Ruxolitinib (Jakavi®) | Macmillan Cancer Support. However, as you mention a sudden increase in your Blood Sugars this is worth your Haematology team investigating for you.
May I ask who is dealing with your raised sugar level at the moment? Is it your GP? I would recommend that both your GP and Haematology team are aware if this so they can manage this in the best way.
Do let us know how the second test goes and call the support line if you need: Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards
Gemma

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Hi Gemma

My blood sugar levels previously varied between 36 to 40 - the higher level of normal

The higher level of 53 was picked up by a routine test on December 2nd. On the latest test on the 19th it had reduced to 49 which they see as a diabetic confirmation. My haematology team will test on the 30th. Hopefully it will fall again. When I was first diagnosed in 2020 it spiked to 48 but fell as the HCT was bought under control

I hope I can avoid a diabetic diagnosis

Regards

Derek

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Hi Derek

It sounds like the Haematology team are keeping a close eye on you. May I ask whether they have given general blood sugar advice in terms of nutrition? If not, this may be helpful High blood sugar (hyperglycaemia) - NHS

Let’s hope that your sugars settle again and best wishes.
Kind regards
Gemma

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Hi Gemma

The latest blood test shows a further slight fall in the blood sugar level to 48

Surprisingly there has been a sharp fall in the HCT which had been controlled around 44/46 but has now dropped to 38. I’ve read that a low HCT can affect the blood sugar. Has anyone had experience of this?

Derek

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Thanks for the update @Derek3 I will copy your post to the Blood Cancer UK nurses for you @BloodCancerUK_Nurses.
What are your nurse or medical team saying?
I hope others can share their experiences for you.
Please do keep updating us how you are and take lots of special care of yourself

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Thanks for the update @Derek3,

Please can I ask when you are referring to your blood sugar results, do you mean your HbA1c blood test level rather than your blood sugar level?

Kind regards
Fiona ( support services nurse)

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Hi Fiona

Yes I do. The haematology team are reviewing the sudden drop in HCT

Derek

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