Ruxolitinib and MF without JAK2

[crapaud]

I have been diagnosed with MF for just over a year now. I am JAK2 negative, no spleen symptoms and have none of the other common mutations.

After 10 months treatment with PEGASYS my condition stabilised without improving. I was strongly advised to go for a BMT.

Consequently my Pegasys has been stopped now for 6 weeks. 1st month OK then eye infections, thrombosis in arms and legs and general weakness.

In view of this my Heamo is proposing to put me on Ruxo to try and get my strength back and reduce the MF effects.

Does anyone else know of Ruxo being used in this fashion?

I repeat, I'm MF with Jak2 neg.

Thanks for any insights.

Crapaud

[JediReject]

Hi Crapaud tis a very interesting set of circs u post coz without splenomegaly and a good few other factors, , not just Jak neg , to answer your question honestly I think you are fortunate to be offered Rux and would jump at the chance if I were you, what have you to lose. I don't pretend to understand your symptoms but we all present a tad differently so give it a go.

I hope you have a result. . take care JR

[crapaud in reply to JediReject]

Thanks Jedireject for your reply.

My consultant thinks it's worth a try and I'm lucky that access to Ruxo appears easier here in France than in the UK.

Have a nice Easter.

Crapaud

[daisystar]

Hi Crapaud, I am surprised you have been offered Ruxolitinib without JAK2 mutation or palpable splenomegaly. One of the effects of Ruxolitinib is suppression of JAK activity; another reduction in spleen size. I have MF with quite pronounced anemia but no splenomegaly and this is the reason why I have not been offered Ruxolitinib even though I am JAK2 positive. Perhaps your symptoms can be alleviated with another set of drugs? That said, you will have to get off all of them if you are considering a transplant. This makes the decision to put you on Ruxolitinib at this time even more puzzling to me. You need to discuss it with your consultant and ask him/her all the questions that are troubling you. You may also want to research the effects of Ruxolitinib yourself. There are plenty of reputable websites which can give you some insights into how it works. Good luck.

[crapaud in reply to daisystar]

Hi daisystar - thanks for your reply.

My consultant thinks that the use of Ruxo will elevate my other non-Jak2 symptoms.

Use of anantibiotics, anti-coagulants etc have not alleviated my health problems over the last few weeks - I refuse to go back on Pegasys because it will mess up the program for a transplant.

I'm lucky that in France apparently there is less difficulty getting access to Ruxo.

Have a nice Easter WE.

Crapaud

[Mazcd Partner MPNVoice]

Hi Crapaud, I have some advice for you regarding your query - First and foremost ruxolitinib works regardless of whether you have the JAK2 mutation or not, it sounds like the haematologist is considering the ruxolitinib to improve symptoms and general well-being as a result, which sounds reasonable, however we do not know your full medical history, so you are advised to discuss this fully with your haematologist. Good luck, and I hope you feel better. Maz

[crapaud in reply to Mazcd]

Thanks Maz,

Your explanation is in line with what my haematologist said - I personally didn't know Ruxo could be used in this fashion.

Have a nice WE.

Crapaud