Yes mine is already at stage three fibrosis of the bone marrow.

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 like this??
Since when u are taking Jakafi?
How long this drug can keep us alive.?

I'm MF with grade 2 fibrosis. Currently on Jakafi 20mg x2 daily for splenomegaly but am switching to Inrebic as Jakafi has failed for me.

God bless you dear Johan... Same is happening with me also

I use Jakafi 20 mg twice a day and have portal vein hypertension for which I have to go for shunts this year.I am 56 years old and had symptoms from 2020 but it was thought by the specialist to be fybromyalgia.It really started showing severe symptoms in October 2022 and I was hospitalized in April 2023.During the full bloodtest panel it showed that I had anemia and my counts was all over the show but it showed teardrop and pencil shaped bloodcells and a host of other readings showed very high Ldh in the liver and higher than 2 percent blast cells.I was then sent to Olivedale cancer center for a bone marrow biopsy which showed it was a Calr mutation and stage three fibrosis.

The key with this disease is to get a very good hematologist that has got experience with Pmf.As we only got about 25 hematologist in the whole of South Africa.And the disease is very rare there is not many specialists who have experience with this disease.The strange part with my diagnoses is that I started experiencing severe anxiety and then told the doctor we need to do bloodtests as this was not the same symptoms I had as they said I have fybromyalgia we then did the tests and found the problem.

We have the same problem as you have in the States that we get doctors that only concentrate on our bloodtest numbers and not on the symptoms.I have told the doctor that fancy graphs on a computer doesn't tell you how I feel.It is more important to help with the symptoms and how I feel as to have fancy graphs and survival scores.This disease is devastating and some of my symptoms is severe back pain for no apparent reason,pain in the spleen area,bone pain,stomach cramps and spontaneous bleeding and pain from the rectum hence the shunts that have to be done.

Then I have severe brain fog and personality changes and cycle during the day then feeling good and then bad.This is not to make you feel bad but it is frustrating to try and find information about this disease especially if you have it severe and there is very little information about it.My owm Gp that I have seen for the last 45 years did not even now what it was he had to check it up.So I was his first patients in a City of 1.5 million people.