Inrebic and myeloproliferative neoplasms | myMPNteam

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Top 9 search results for "Inrebic" in Q&A. To see all results and access other features, sign up for free.

How Many Have Had Myelofibrosis Longer Than 2016?
A myMPNteam Member asked a question 💭
A myMPNteam Member

I transitioned from ET in 2016. Started Jakafi 20 mg twice a day from hydroxy and felt so much better. Have done well, platelets started going down so reduced to 15mg. Platelets still low and a lot… read more

MF, Potential Jakafi Failure. Dr Suggesting Inrebic But I'm Nervous About That Drug, It Sounds Harsh. I'm Trying To Understand My Disease.
A myMPNteam Member asked a question 💭

Overt Myelofibrosis, grade 2 fibrosis with 30% cellularity, and splenomegaly 21cm. CALR1+, with ASXL1, and TET2 mutations. Blasts only at 2% which is good but that's an increase nonetheless. LDH 800's, RBCs <4.00, HGB 11.5. PLTS 600, slight lymphocyte elevation. nRBC's 10 with polychromatic cells, darcocytes, and ringed cells. Bone scans show "Diffuse osteosclerosis" and I don't know if that means advanced fibrosis or if that's just super common with us MF people.

Symptoms are fatigue, pain in… read more

With Myleofibrosis, How Does A Doctor Determine Which Medicine To Choose
A myMPNteam Member asked a question 💭
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A myMPNteam Member

I switched from Jakafi to Ojjaara when my spleen enlarged and my red blood cells were dropping. Since i switched to Ojjaara, my spleen reduced to normal and my hemaglobin is doing well. Good luck with… read more

Does Anyone Here Has Grade 2 Myelofibrosis???
A myMPNteam Member asked a question 💭
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A myMPNteam Member

Hi Will
My doc has suggested to to take jakafi 20 mg twice daily. But I haven't started yet. I have migraine and brain fog. Also have slightly increased body temperature. Do u also have something… read more

Hi Everyone! Is There Anyone With PV Taking Jakafi? I Wanted To Know About Side Effects. Appreciate Your Feedback About Taking Jakafi.
A myMPNteam Member asked a question 💭
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A myMPNteam Member

I had shortness of breath and extreme weight gain due to bloating. I'm off of it now.

ET Specialists / Care In Scotland.
A myMPNteam Member asked a question 💭

Hi, I’ve recently been diagnosed with ET and the Jak 2 mutation and platelet count around 600, I’m 61 with no symptoms so far, so this has been a massive shock.
I’m taking aspirin but reluctant to start taking Hydera which will be recommended at my next appointment at the end of the month.
Is anyone else here from Scotland? What had your care been like are there any real specialists anyone has seen ???

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A myMPNteam Member

I do not have an answer but I am experiencing the exact same thing…I’m female 65 and never sick…I am overwhelmed with this news.

What Are People Paying For Jakafi
A myMPNteam Member asked a question 💭

I am on Medicare and Medicare Drug Plan, using AARP, I was just thinking about going to Jakafi and the price I am being quoted is around 2900.00 per month for 10Mg twice a day. Just curious what the real cost is. I can go to my Cancer Center and ask them to try for a better price, still won't know what the price should be.

A myMPNteam Member

I took Jakifi from April '22 until maybe November. I paid more like $4600 a month with insurance. Now I'm on Inrebic which is more like $6200 a month and I'm having to go look for assistance in order… read more

Can Anyone Share How They Responded To Interferon Or Other Treatments To Lower Their Platelets?
A myMPNteam Member asked a question 💭

I have ET, Cal Axion 9 Mutation (Calr). I have been on HU for over a year, my platelets have reached 1.5 million. (They have been at 1 million for over a year.) I am wondering about side effects. Thanks in advance!

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A myMPNteam Member

From what I understand also, $3300 is the maximum out of pocket in 2024 and in 2025 it will,be $2000.

Enlarged Spleen Treatment?
A myMPNteam Member asked a question 💭

I had a spleen ultrasound done today. I’ve been having symptoms. They said it measures14.4by14.1by8.1cm. Enlarged. Has anyone had this and what’s the treatment? I have ET since 2013.

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A myMPNteam Member

Thanks will do!