Jakavi and anaemia

[Patchworklife]

Two months ago I started taking Jakavi which wonderfully eliminated several symptoms but has caused anaemia leaving me tired and breathless. I get very cold and shivery. Do others have these problems? A small infusion of iron had no effect.

[mikerodol]

Hi

When jakavi is started it will normally cause anaemia - did when I started taking it too. After 8-12 weeks of treatment Hg levels should start rising however. I have been on Jakavi for over 2 years and levels have risen from 77 to 123 in that time. Hope this helps

[Patchworklife in reply to mikerodol]

Thank you for kindly replying - yes, you have helped.

[love0826 in reply to mikerodol]

Hi, may I ask please.....isn't Jakafi very expensive? How can you afford it? I am on HU and feel constantly anxious and depressed, foggy etc. So I looked alternatives up and saw jakafi was like $15K/monthly, right?

[Patchworklife in reply to love0826]

Hi love0826 it sounds like you're having a tough time. I hope you come through this soon. You're not alone. Yes, Jakavi is very expensive and I am very grateful that I have been prescribed it free here in the UK.

[Cja1956 in reply to love0826]

Yes, jakafi is expensive but my insurance pays for it. Here in the US, it’s called a specialty drug. They charge my insurance company $12,000/mo but I only pay $10. My doctor arranged it for me.

[love0826 in reply to Cja1956]

thanks so much, very good to know.

[Patchworklife in reply to mikerodol]

Thanks mikerodol. Yes, your reply helps! I was so glad that several difficult symptoms of MF (post PV) had disappeared that I was shocked by the problems caused by anaemia! Our amazing sharing community is encouraging me to believe I'm not alone and that things may improve.

[Inca]

I have been on Jakavi,for 8 weeks now...I am breathless,tired and bouts of shivery then hot!!!Last results were OK,except for HCTand HG a bit higher .

Just seen consultant,he did not seem too worried,as he says P V and getting older ,doing too much......9 yrs now he has heard the same things from me!!!!Was on Hydrea when diagnosed,seem to remember feeling odd with that to start with. We have a very strange maladie.Hope all improves for you.Best Wishes.

[Patchworklife in reply to Inca]

Thank you Inca. It’s kind and reassuring of you to reply.

[Cja1956]

I also started Jakafi about 8 months ago. About 2 months ago, I became anemic and I also feel really cold all the time. But it got rid of my daily headaches and I’m able to eat more without pain so I think it helped reduce my spleen size. So I am feeling a lot better. Hope that helps.

[Patchworklife in reply to Cja1956]

Thank you Cja for your reply. It is a comfort to know I’m not alone in my positive and negative responses to Ruxolitinib.

[Patchworklife in reply to Cja1956]

That's good news!

[Rachelthepotter]

Hi. I too had a drop in hgb when I started on Jakavi ( we call it ruxolitinib in the UK, pet name rux) and it took a transfusion or two before it got back up to approaching normal. Also had ( and still get) hot/cold shivers.

If a red cell transfusion is an option, its worth discussing with your specialist.

[Patchworklife in reply to Rachelthepotter]

Thank you Rachel. I am touched by the kind responses from so many people like you in our community.

[socrates_8]

Hey there...

Short answer... Yes!

Unfortunately, Anaemia is a by-product of suppressing our immune systems in the hope that we will also be suppressing our bone marrow from creating an over abundance of blood cells etc...

Even though I do suffer badly from anaemia, I also find it helps to do consistent exercise, and that in turn helps to bolster my energy levels.

However, and that said, there are still many days where I do really struggle with it all too...

At the very least, you have my empathy...

Hang in there. Best wishes...

Steven

(Sydney)

[Patchworklife in reply to socrates_8]

Thank you for your reply. It is very helpful to look into the future with honest messages from fellow MPN voices. At the moment it all seems a bit scary but I'm grateful for all the shares!

[Chicagopv]

I have anemia on Jakafi and take bloodbuilder minis, which I order online at mega foods. It’s better than straight iron tablets. I’m in the US.

[Patchworklife]

Thanks for your suggestion Chicagopv. I am on blood thinners (Warfarin) so have to be careful about taking supplements.

[rkhabtec]

Hi I also have PV and am on Jakafi. After about 8 mths I started an iron tablet also and it has really hepled