Azacitidine side effect

[billybrock]

I have MF and have been on Jakafi for over 2 years. During this time my spleen has enlarged to fill my stomach. It is not reducing, so my Haematologist recommended a chemo drug named Azacitidine. I have had the first cycle of 7 days and finished just over a week ago. However, I am experiencing Insomnia. I cannot sleep and have no desire to sleep. I have had 4 sleepless nights, and cannot sleep during the day. It’s as if the sleep mode has been disabled. My GP has prescribed a sleeping pill. So I will see if that works.

Billybrock

[JediReject]

Hi billybrock, , sorry to read of your troubles it sounds like you're having a rough time of it. Like you Ruxolitinib had no effect upon my spleen for the shortish time (14 months or so) I took it. In my case I'm unsure if it halted it's growth as it didn't seem to get any bigger however without a full CT Scan to check the volume as opposed to simply it's length I never knew for sure.

It's good that your Hem is trying to tackle it another way albeit with a chemo drug. My guy at the time was found wanting and had no back up plan.

The fact you now need a sleeping tablet put me in mind of the rhyme about the old lady swallowing a fly , then a spider etc. Many of us are on more meds because of that counteracting effect.

I hope things work out for you with it all , I've lost touch a bit with the latest drug development so unsure if currently any viable alternative to Ruxolitinib but I'm sure others might know more.

Chris

[Wyebird]

You must be exhausted. Is it reducing your spleen size?

[Pte82]

billybrock, Azacitidine causes a loss of magnesium and potassium. A magnesium deficiency causes a thiamine deficiency because it's needed to activate thiamine. Research that side of the medication and discuss it with your care team.

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