Myelo fibrosis

[Carpangler]

Hi

I am in the intermediate stage, level 2 of the disease and go onto ruxolitinib tomorrow. I have looked on several forums and never managed to connect with any fellow sufferers from this mpn variant. Can't get any real information on immunosuppression or even what to expect or look for in the future. Anybody out there who has real experience would be a godsend. Thanks and good luck to you all.

[hunter5582]

Hello and welcome to the forum. You have definitely found the right place to be. There are others here on the forum with MF who take ruxolitinib. They can speak to you from their experiences. I am not one of them. I have PV and take PEGyated Interferon. I have also used hydroxyurea, but it was not effective and I could not tolerate its toxicity.

Like all of the meds we use to treat MPNs, RUX has a risk/benefit profile. You will hear from people who tolerate it well and from those who have had adverse reactions. Since RUX is a JAK-inhibitor it can reduce the production of various types of blood cells. Just because it can does not mean that it will. This is true for all of the potential adverse reactions from RUX or any other medication. Your hematology care team will be following you and monitoring how you react. They would note significant reduction in leukocytes if that was to occur. Adjustments can and will be made based on how you react.

Note that PEG has been very effective for me, but it did reduce the Lymphocytes below normal. Not, however, so low that it is a concern. PEG is controlling symptoms, allowing my iron levels to return to normal, not requiring phlebotomy. I achieved complete hematologic remission in a matter of months. I would call that well worth it.

It is understandable to have concerns as you embark on this stage of your MPN journey. We have all been there. Know that you are not alone and that there are plenty of people here on this forum who will support you.

All the best.

[MCW22]

I've been on ruxolitinib just over 2 years for pv Jak2 + I have grade 1/2 fibrosis and high white cell count. I tolerate it very well. Just a couple of days of dizziness when I first started it. It immediately reduced my spleen down from 15cm to 13cm and my white count from 30 down to 17. However whites have gradually crept up again. I have blood tests every 8 weeks to monitor things. I feel very lucky to have been prescribed this drug. I would most definitely say give it a go.

Carol

[skipperL]

Hello Carbangler. - have MF ..Ruxolitinib is wonderful while its effects last. I posted the other day to say that Ruxolitinib was losing its strength. It has a short term benefit. I have been on it for over three years and it transformed my life, no more itching, sweats, fatigue, etc. I would definitely take it - the only side effect was weight gain.

Now sadly my symptoms are returning with overwhelming fatigue, anaemia and three weekly transfusions. I have to consider combined therapy between Danazol, Thalidomide and Prednisone.

However I would say go ahead with the Ruxo and enjoy your improvement while it lasts!

SkipperL

[tracey13]

Hi welcome to this forum. Sorry to hear you have MF.

My husband started with PV now he's primary MF he's been on ruxolitanib coming up three years it's been a life changer for him it's reduced his spleen also he isn't suffering from extreme fatigue .

All his bloods are back in normal range now .

Good luck hope ruxolitanib works well for you .

Tracey

[Cja1956]

Hello, carpangler. I am post Et mf. I am intermediate one with Grade 2 fibrosis. I was diagnosed in 2019 although my doctor thinks I had it earlier and my previous doctor missed it. At the time of diagnosis, I was on anagrelide and Ruxo fir about 3 years. But I had developed anemia and my platelets we’re in the 700’s. My new doctor immediately took me off those medications and put me back on hydroxyurea. She felt that the Ruxo had helped to cause my anemia. She started me on EPO injections every other week for 4 1/2 months. My hemoglobin went from 8.7 into the 10’s and have been stable ever since. Currently, I only take hydroxyurea and baby aspirin.

I hope that helps. I wish you all the best.

[Leighcox85]

I have mylefibrosis diagnosed 2009 been taking rux for quite a few years 25 mg twice a day any help I can offer you at all iam happy to

[Carpangler in reply to Leighcox85]

Thank you. Still very much in the dark about what the future may bring. I know we are all different and there are lot of unknowns but any knowledge or experiences of myelo fibrosis would help.

[DJK12]

I'm Post ET MF also at level 2 and I've been on ruxolitinib for 4 years and now on 5mg twice a day. Spleen shrank, night sweats disappeared, except when I have an infection, and platelets stabilised. I haven't had weight gain but I remained transfusion dependent so use EPO injections every 5 days to keep my count at about 10. I understand though that many people using it find their anaemia settles after a few months. I have a tendency for infections to turn into pneumonia and have to make sure I get swift medical help but on balance ruxolitinib has been a good thing.Hope you have success with it.

[Thankfulone]

I'm also post ET MF. Been on Ruxilitinib since 2016, 20 mg twice a day. I've had weight gain but otherwise it been very beneficial for me. Recently have felt more fatigue again but mostly all good. Hope it works as well for you.

[Otterfield]

I am on Ruxolitinib 20mg twice a day fir post ET MF. I feel very well and fit even though my fibrosis is Grade 3 and haemoglobin and platelets are both very low. Before diagnosis, the itching and nightsweats were very bad and my weight had plummeted. I have decided to have a stem cell transplant but if Ruxolitinib could work forever I would stay on it forever!

[Rachelthepotter]

Hi. I’ve been on rux ( I have MF) for 4 years. Main thing I wish I’d been told is to be very aware of skin cancers. I ended up with a rare complication of sarcomatoid SCCs Really nasty, aggressive, and can happen when you’ve already had sun exposure or other skin cancers. To be honest, dealing with the skin cancers on my face ( surgery and radiotherapy) has caused me more problems and more grief than the MF The Rux maintains my counts normally, except for lie HgB. I get anaemic and very tired. But that seems to go with the package.In the UK, dermatologist see the side-effects of the aggressive skin cancers, but the haematologist who prescribe the ruxolitinib are mostly unaware of the effect. Even in world class MPN centres.