Jakafi - Low Glucose Levels

[Gracey22]

I'm on Jakafi 2 years 5 mg twice a day. The last 3 Dr Visits my blood work shows I have low

glucose levels. I have no symptoms from the low glucose. My Oncologists wants me to see

an Endocrine specialist. I was wondering if this may be a side effect of Jakafi. Has anyone had

any experience like this with Jakafi?

[paul0749]

Hi Gracey - I was on 50mg daily of Jakafi for one year and had all kinds of issues. I decided to go to Mayo Clinic in Rochester MN. The Mayo doctor called Jakafi "poison" and over a period of 4 months removed me from it. After being removed from it I feel significantly better and to a surprise my Hemoglobin, Platelets and Hematocrit have significantly improved. He said there are two new drugs, one just recently approved by the FDA and another will soon be approved in June that are going to be much better than Jakafi.

[EPguy in reply to paul0749]

paul:

Your PLT and HCT went up after stopping the Rux, is that right?

Your Dr may be referring to the new Jak-i's- Vonjo and Momelotinib respectively. Vonjo is for pts with low PLT, while Momelot is for those with anemia. This second one is a great need for many MF pts.

For those with high enough PLT and RBCs, Rux is still effective, this is one reason it is showing better results in PV than in MF.

Vonjo is available now, Momelot has an FDA action due next month.

On the comment "poison" the old saying "the dose makes the poison" applies to most our meds. 50 is a high dose.

[paul0749 in reply to EPguy]

Hi - I have three oncologist. One at my California home, one at my MN home and Mayo clinic. They all work together. I was diagnosed over 5 years ago with primary polycythemia and secondary myelofibrosis. For many years I was just on hydroxyurea. One year ago April they started me on 10mg of Jakafi and had to keep increasing it as my platelets were extremely high and both hemoglobin and HCT were extremely low. Also, my spleen was getting larger. I needed two blood transfusions last year. A bone marrow biopsy was done in November. All turned to primary myelofibrosis at a severe level. No more polycythemia. Kidney readings were also elevated. Started getting Procrit injections mis December. Mayo doc suggested in January this year we try slowly removing me from Jakafi. I have been off of it for 10 days now. All three docs are mystified. My platelets this Monday was 375 in normal range for the first time in over five years. My hemoglobin was normal range and HCT was a little low. White blood normal and my three kidney readings were all back to normal. If my spleen starts enlarging again and platelets get elevated they will try either memelotinib or pacntinib. In summary. I'm feeling the best I have been in many years.

[EPguy in reply to paul0749]

That is amazing. Feeling ok is a treasure we don't know till it's gone.

Improvement over just 10 days is near instant. Seems you have a case study the Drs should learn something from. Do they think there could be any marrow improvements with all this good stuff?

[paul0749 in reply to EPguy]

We have no idea if the bone marrow has improved and I have no immediate intensions to have another bone marrow biopsy. The Procrit injections have significantly helped the hemoglobin.

[JAB6 in reply to EPguy]

Hi EP guy, read that momelotenib decision for approval has been postponed until Sept. 2023. Didn’t give reason why.

[PvSF]

hello- I’m in the same situation

[robl777]

gracey I know this post is 2 years old but just wondering if your blood sugar levels are still low.i had a reading of 64 fasting blood sugar and I dont have diabetes.it goes up when im awake and after I eat drink etc......how low was your blood sugar on your blood tests and did you find out if jakafi causes this?