Ruxolitnib side effects

Liz M 23 days ago

14 replies
26 subscribers
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Hi everyone

I have been on ruxolitnib now for over 3 years. Its making me anaemic as well as causing fatigue. I'm struggling with the fatigue as it's have a big impact on my daily life. Had to go on ruxolitnib as I have PV and the itchy skin was unbearable. The meds have taken away the itchy skin completely. I'm so grateful for this but other side effects are difficult to deal with. Couldn't tolerate hydroxyurea unfortunately. Has anyone else having bad side effects? Best wishes to you all x

Naugus 23 days ago

I have been on Ruxolitinib for over a year now. So far I have been doing well my HGB went down in the beginning but came up to 9. This drug does lower your HGB. Have you asked your doctor about Momolitinib?.

Naugus

Liz M 23 days ago in reply to Naugus

Hi Naugus

Monolitnib has never been mentioned to me. I've never heard of it. Can I ask what HGB is please?

Naugus 22 days ago in reply to Liz M

HGB is hemoglobin. Momolitinib is a new inhibitor that is supposed to not lower the HGB.

Sold in the US under the name Ojjaara. I’ve read it comes with its own side effects but with our disease anything is worth a try.

Naugus 22 days ago in reply to Liz M

Another thought. Has a stem cell transplant been offered to you?. I was deemed not eligible due to age.

Liz M 22 days ago in reply to Naugus

Never been mentioned and don't think it ever will. I was refused a bone marrow biopsy.

Liz M 22 days ago in reply to Naugus

Shortened version for haemoglobin. Thanks.

Liz M 22 days ago in reply to Naugus

Was told two weeks ago I'm borderline anaemic but haemoglobin is ok.

Naugus 22 days ago in reply to Liz M

Do you mean a stem cell transplant.

Liz M 20 days ago in reply to Naugus

No it's a bone marrow biopsy

JEM1 11 days ago

Hi Liz, I was diagnosed with Polycythemia Vera in November 2023 and have been on Hydroxycarbamide which I couldn’t tolerate and now I’m on Ruxolitinib and just like you has made me anaemic and low in Folate. I am plodding on and taking things as they come. Just out of hospital after being diagnosed with Atrial Fibrillation needless to say more meds on top of what I’m taking and by the sounds of it both can cause the same dangers of thrombosis and stroke, one doctor says, joking like’what’s for you will not go by you’ so true as we all have to make the best of what is thrown at us. Keep well and remember there are people on here to share your worries with x

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Ruxolitnib side effects