Inrebic and myelofibrosis

[Cja1956]

As some of you know, I changed hematologists in September and found out my ET had finally progressed to MF. 🙁 My new doctor prescribed Inrebic and for the last month I have felt so fatigued and weak, it has affected my quality of life. I work a lot from bed now and rarely go out except with my partner, if we have an event. He’s been really good about it, doing all the food shopping and often bringing dinner home. My doctor told me last week that she is not sure whether it’s the illness or the medication that is affecting me so badly. I see her weekly now and my hemaglobin is slowly rising but my platelets are in the 700’s. Any thoughts?

[Osteomyelio]

Sorry you are not feeling well. Didn’t you post about a kidney infection a few months ago? Is your infection gone?

[Cja1956 in reply to Osteomyelio]

Yes, thank you. How are you feeling?

[socrates_8]

Hey Cja...

Sorry to hear that you are not feeling all that well at present...

It is rather interesting to learn that you are on Fedratinib instead of Jakafi...

I am always curious to know why a decision like that might have been made (?)

As 'Fedratinib' has only recently become approved by the FDA in the USA, and there was some literature suggesting that is was helpful in cases where thromboctyopenia

were keep Platelets at a much lower levels etc... (see Links)

(FDA Approval): fda.gov/drugs/resources-inf...

mayoclinic.org/diseases-con...

Jakafi, did help me a great deal and in many ways. However, 'Fatigue' still hits me in waves from time to time... Some times I feel it coming but most often I do not... It just arrives, and when that happens I really struggle to do much of anything other than try to get some rest... at some point...

Fatigue, is a problem of all MPNs... unfortunately...

Hopefully, after you have settled in with your Med's you might find you can actually push yourself a tad more... Works for me... but it is a struggle still at times...

Hope this helps a tad...?

Steve

[Cja1956 in reply to socrates_8]

Any support always helps. 😊 I was on Jakafi, Anagrelide, and hydrea when I first went to see her. After my new diagnosis, she took me off of everything, except hydrea and put me on Inrebic. She did mention last week if I still feel like this tomorrow, she might put me back on Jakafi.

Take care and thanks for your support.

Cindy

[socrates_8 in reply to Cja1956]

Cindy... hi again... :-0)

What levels are your Platelets at?

Steve

[Cja1956 in reply to socrates_8]

Still over 700. Why?

[socrates_8 in reply to Cja1956]

Hey Cindy...

As I mentioned to you above in my first response to your Post...

'Fedratinib' is usually being used when a patient is experiencing a Lower level of Platelets, due to what is called 'Thrombocytopenia'

That was why I was curious about your being on 'Fedratinib' and what level your Platelets were currently etc... However, even more so now, learning that your Platelets are still so high at 700 etc...

Anyways... please do keep us all posted as to how things progress etc...

Best wishes

Steve

[tracey13]

My husband has mf his on ruxolitanib and he's doing really well.

He works full time he does get really tired but his job is demanding so this doesn't help.

Maybe this medication isn't right for you.

I would ask about ruxolitanib jakafi

My husband started on this in February and all his bloods are in normal range . His spleen has reduced down it's still not normal size it's only 4cm over the parameter so there's a chance it will reduce back to normal .

Hope you get sorted out soon x

[Big-Ted]

I was diagnosed fibromyalgia recently so my haematologist started me on jakafi last monday and stopped hydroxycarbamide fingers crossed it will work for me as platelets never go.below 1000.Hope everyone is doing well