Thank you and latest blood results

[artydutch]

Thank you for sharing your experiences with Ruxolitinib.

I have now completed 4 weeks on Rux, 20 mg twice a day for PMF intermediate 2. My bloods, already low and out of range before I started, have dropped considerable. Today platelets were 51 and neutrophils 1.5. 10 out of 14 of the complete blood counts are out of range

Last week I saw the local haematologist and asked what the bottom numbers are, that are acceptable. I was advised platelets 50 and neutrophils 1.

The hemo nurse rung today and advised to carry on. I queried this and she contacted the consultant for advice. I was advised to do another week on the same dose unless bruising or bleeding?… I have booked a blood test for Thursday, just in case…

Next week they may advise to stop Rux, to let bloods recover and then to restart on a lower dose.

My platelets have been dropping between 20 and 30 a week since starting. This means that they could go as low as 30 or even 20.

Has any one had similar results and how low were blood allowed to go. Did anyone stop Rux and for how long? How long do platelets need to recover?

[Scaredy_cat]

I too had problems with ruxolitinib lowering platelets too far. I was only on a low dose to try and shrink my spleen but couldn't raise it because of the platelets. I was swopped to fedratinib. I think there other alternatives now as well. Ask your haematologist and check if they are an mpn specialist.

[beetle]

unfortunately ruxolitinib is one of those drugs that it is not advisable to stop without tapering off. In my experience they are more likely to adjust the dose until they find the best dose for effectiveness without excess myelosuppression. Good luck.

[ainslie]

be very careful about stopping Rux without tapering off slowly, it should definitely not be stopped abruptly especially from such a high dose, if your doc agrees you might be able to just reduce the dose as opposed to coming off, if in doubt definitely get a second opinion from a MPN expert. A typical taper off would be something like 5mg reduction per week but you need expert guidance.

[Bobadog]

Hi,

I’ve only just started taking Rux(10mg twice daily) ,primarily to control my haematocrit.(PV)

I was repeatedly strongly advised not to stop taking it suddenly.

Do try and get a second opinion with an MPN specialist.

All the very best,

Bobbie

[EPguy]

A different jak inhibitor, Vonjo (pacritinib) is specifically for MF pts with low PLT. I don't think it's approved yet in UK but if/when it is you'll want to discuss with your Dr.

vonjo.com/patient/patient-i...

As others say here, slowly lowering the Rux dose is the proper way.

[Charferqueen]

I propose you to find an authoritative hematologist to take Rux and using interferon at the same time.