New meds for Myelofibrosis

[Cja1956]

Hello, all. So I just received my first shipment of a new medication called Enribic. My new specialist told me that it’s just released from the FDA here in the US and it’s especially for Myelofibrosis. I’ve been taking Jakafi and hydrea for years. She increased my Jakafi recently from 20 mg to 40 mg/day And it seems to be working with increased energy and less brain fog. So I was just wondering if anyone had ever heard of this new medication, Enribic, Because I am kind of scared to start taking something new that just came on the market.

[piggie50]

If you mean Inrebic, this is the trade name for Fedratinib. I understand use of this drug was stopped in 2013 but it was then approved again 12 months ago. If you search health unlocked at the top of this page there is previous info on this from PV reporter.

I’m sure someone will be able to give you more info, Paul12345 has also previously posted on this.

[Cja1956 in reply to piggie50]

Thank you.

[Rachelthepotter]

Hi

The generic name for Inrebic is fedratinib: It can cause some nasty brain and memory problems. Here is the manufacturers own warning:

“Warning

Severe brain or nervous system problems, like Wernicke's encephalopathy, have happened with Inrebic (fedratinib). Sometimes, this has been deadly. Talk with your doctor if you have low thiamine (vitamin B1) levels or poor nutrition. Tell your doctor if you have sudden weight loss or weight loss without trying. You will need to have your thiamine level checked. Call your doctor right away if you feel confused or very sleepy. Call your doctor right away if you have a change in balance, change in eyesight, trouble thinking or walking, or memory problems.”

So if it were me ( and I have myelofibrosis, doing ok so far on ruxolitinib plus EPO to help the anaemia) I’d want to know why those risks made sense for me. Nerve and brain damage is usually irreversible. Did your haem check your vitamins B1 levels? If not, they should have.

I found that 15 mg twice a day of rux suited me fine: when my haem upped it to 20 mg twice a day it triggered a nasty skin cancer.

[Cja1956 in reply to Rachelthepotter]

Thank you, Rachel. It’s so hard to know what to do.

[socrates_8 in reply to Rachelthepotter]

Hey Cja...

Yes, always a tad concerning in being one of the 'first cabs off the rank' so to speak when trying out new medications... Hence, I share some of your concerns here...

Generic Name: Fedratinib (fed RA ti nib)

Brand Name: Inrebic

Was only recently re-approved by the USA's FDA for use in treating Myelofibrosis etc.

As Rachel & Judy have already mentioned above...

We can all react a tad differently to our Med's, as we are all a tad different from one another in our own bodily chemical compositions etc.

Very interesting that you are on such a high dose of Ruxolitinib... Myself, I have been on 25mg b/d for 7-8 months, alternating down to 20mg b/d and back again... However, my Platelets in recent times had started soaring into the 900s-1M range...

Just in these last few weeks, I commenced trialling Low-Dose Methotrexate (MTX) 10mg per week, followed by daily Folic Acid, and my platelets have finally started to fall, (Last bloods 893, 832 - next bloods in a week's time). My Hgb & Hct values have also returned into the lower ranges of normal, and my anaemia just these past few days is really much improved...

However, like with Fedratinib (Inrebic), there are possible adverse side-effects but hopefully, using MTX for me will be short-term... (?) We shall see I guess...

How are your Platelet levels? High or Low Cja?

Best wishes

Steve

(Sydney)

[eire]

Hi Cja1956, it's a very difficult decision only you can make. I'm on 50 mg Jakafi but I really do feel fine. I'm going to be given an option to go on a trial where I may/May not receive the 'real' drug and I have a very strong feeling this is the drug I will be offered. The main problem I have is an enlarged spleen which is approx 23cm. Of course this creates problems with clothes and bending over the bump and I'm very self conscious about it as I feel it makes me look pregnant!!!! Not a nice look at age 68. Trivial things really in the wider scope but never the less have an impact. After reading your post this morning I looked up the drug and of course it does create huge doubt in your mind. Steve's post made a lot of sense (as did Piggies and Rachael) we all would prefer more people to have taken the drug and posted on here for us to read!!!! I wish you really well with your decision and I have to say I now have lots to think about too!!! Keep in touch.

Pat

[pj1963]

I wish you well with this. Why has your haematologist decided to change medication if Jakafi is working well?

Paula

[Cja1956 in reply to pj1963]

Sorry I didn’t reply sooner, Paula. But if you read my most recent post to Pat, You’ll see that I had a very challenging week and spent most of the time sleeping. I think my doctor just wanted me to try something new because I’ve been on Jakafi for three years along with the Hydrea and not much was happening. In the last two months my platelets went from 883 to 479 today. So I guess in that way Inrebic is having a positive effect on me. She is just trying to stabilize me.

Hope all is well.

Cindy

[michael123]

I would not. It was taken off market once. I stick with what your doing. If u doing good why would your doctur want u to switch.

[eire]

Hi Cja1956, well I've had the call to go and discuss taking Inrebic as part of a trial. I'm still very undecided but the temptation my spleen could shrink is very tempting. I was more in the NO camp but will go along and see exactly what's ahead!!! I've read all the posts and obviously did a Google search and will make a final decision once I've spoken to my haem. We really are a brave lot aren't we???? Or desperate...... I'll let you know what decision I make my appointment is the 12th november. Hope you are keeping well on this drug? I feel the longer we keep going there could be major developments in MF.

Best wishes.

Pat