Jakafi - Chronic Myelofibrosis

[Fresa7]

I’m 72 years old hispanic female & was diagnosed with Chronic Myeloproliferative Disorder - Primary Myelofibrosis on January 2024. I started with Jakafi 10 mg (bid) on February 2024 & my symptoms have been very interesting.

During the 1st two weeks I experienced nauseas & dizziness with both dosages, morning & night. I even fell & spent 2 days in the hospital. For the past month I started to experience the following only with the morning dosage after 2-3 hrs of taking it: my feet get heavy & my legs start to get achy, then I feel a strong heat inside my body (not like a hot flash), all of the sudden I get very tired & some days I get a very strong pain in my neck, left arm or both legs. I normally try to take a nap & around 3 pm I start to feel better. Has anybody experience any of these side effects?

I drink at least 3 quarts of water throughout the day & my daughter has me drinking gatorlyte drink with the morning dosage & 8 oz of pedialyte with the evening dosage. It helps lessen the pain I experience during my morning dosage & I sleep ok at night, I only take Tylenol for pain.

The positive out of all of my experience is that my wbc, platelet & other blood counts are starting to move toward normal parameter, but others are going up (my liver enzymes) & my hemoglobin is starting to drop, ugh. I feel awful & so sick every single day. I don’t even want my md to raise my Jakafi dosage. I was in pain before my diagnosed, but now… no bueno. This is all new to me & I’m so scared 😢

[Fieldsy57]

Sorry to hear of your diagnosis and though I am on HU and not Jakafi I wanted to give you some words of support and encouragement as you say you are scared. I think everyone is a little scared at the start but I have been a regular reader of these posts and it appears each sufferer has a different journey. I volunteered for a drug trial so do get more tests and help then I would otherwise get but I hope that your MPN specialist will be able to help you with some of the effects you are presently experiencing. I was given sickness tablets when I first started treatment though I have luckily not yet needed to use them hopefully your consultant will be able to help you with this.. Keep reading these posts for more knowledge and support and even what you have written will likely help another sufferer. You are not alone and together we can help each other live the best quality of life we can. Good luck👍

[Fresa7 in reply to Fieldsy57]

Thank you so much for your reply! My eldest daughter is taking me to get a second opinion & God’s willing the mds might work together to find out why I’m reacting this way. Yes, I’ll start searching for more info here. Take care!

[paul0749]

I was on Jakafi for one year. I had similar symptoms like you had including constant diarrhea and constipation. I didn't want to leave the house. After eight months, my Hematologist sent me to Mayo Clinic in Rochester Minnesota. My new Mayo doctor referred to Jakafi as "poison". He said there are much better options. Over a four month period I stopped taking Jakafi. My Platelets range from 525 to 900. He said the key solution is to keep them slippery. For that I take a baby aspirin in the morning and Plavix in the evening. They also started me on an injection of Procrit. I receive an injection when my Hematocrit is below 36 and my Hemoglobin is below 12. I am also on 1500mg of HU daily. Other than daily fatigue, I feel great. I should also note that I have 3 Hematologists. One at my MN home, one at my CA home and Mayo Clinic. They are all in agreement.

[Arami in reply to paul0749]

Hello Paul, just a quick question - are you diagnosed with MF? Because if you are, I would like to ask you some questions regarding your current treatment in MN. Thank you so much!

[paul0749 in reply to Arami]

Yes, I have had Myelofibrosis for 7 years.

[Arami in reply to paul0749]

Hi and Thank you for responding. I was diagnosed 2 years ago, took hydrea 500 mg / day, felt great, but my dr insisted that I start Jakavi. Which I did 2 months ago and ever since all my numbers went in the wrong direction. The spleen indeed shrunk, but my anaemia got so bad last month that now I need the weekly injection with erythropoetin. And I am tired all the time,, hemoglobin 7.7. So I was curious at which point did your dr decide to take you off Jakavi? Will it get better? Worse? Thank you in advance!

[paul0749 in reply to Arami]

After starting Jakafi my numbers also started to go in the wrong direction. I started receiving iron transfusions and blood transfusions. Nothing seemed to be working. It was recommended that I immediately go to Mayo Clinic in Rochester MN for another opinion. The Mayo doctor immediately started my withdrawal of Jakafi over a four month period. As stated before, he also put me on one baby aspirin daily along with Plavix which I was already taking as prescribed from my Cardiologist. He doesn't care what my platelet count is as long as I continue Plavix and aspirin to keep them slippery. He recommended that that I take 1500mg of HU daily. I have now been off Jakafi for 14 months and receive a Procrit injection about every 4 to 5 weeks. I would highly recommend you get another opinion. Everyone's body reacts totally different. All three of my Oncologists have worked with a significant number of Myelofibrosis patients.

[Arami in reply to paul0749]

Many thanks for everything you wrote. Would you mind sharing the name of the doctor in Rochester? I hope it is not against the forum's rules. I lived in Mpls years ago, now I am out of the US. Thank you again!

[paul0749 in reply to Arami]

I would not prefer to share his name on this site. Sorry

[Tico in reply to paul0749]

You can do it by private message if you don't want to share it on the forum.

[paul0749 in reply to Tico]

How is this done???

[Tico in reply to paul0749]

Go on your chat icon at bottom of the page and select the user name you want to private message.

[Arami in reply to Tico]

Can´t thank you enough!!!

[Tico in reply to Arami]

No problem.

[Arami in reply to paul0749]

Paul, I got the message forwarded from Tico. Thank you so much!!!!

[Fresa7 in reply to paul0749]

Thanks Paul! Yes, I’ve been only on Jakafi for 4 months & my body don’t agreed with the medication; I also have diarrhea. I go only to my appointments. My life has changed so much My eldest daughter is taking me to get a second opinion @ Moffitt Cancer Center. I’ll share an update after my evaluation.

[paul0749 in reply to Fresa7]

Good Luck!

[Artjoy]

I’m very sorry you are experiencing such difficult. I can only say that I took Jakafi for 10 years and never had any of the symptoms you describe, with one exception; my hemoglobin did drop while on the drug, which is a known side effect of Jakafi. I took Aranesp injections which raised my hemoglobin back to my usual levels (around 10) while on Jakafi. I certainly never experienced any pain or nausea. Jakafi helped with my energy, despite its small effect on my hemo. The symptoms you describe do not sound to me like they were caused by Jakafi. I recommend starting slowly, 5 mg twice a day. I also recommend looking for another possible cause for your pain and nausea I know a great many people on Jakafi, and have never heard any complaints of pain, nausea, or dizziness. I wish you the best of luck.

[Fresa7 in reply to Artjoy]

Thanks for your reply! My hematologist started me on 10 mg, I took 5 mg in the morning & then 5 mg at night. Then because of my labs results, she raised it to 20 mg, so I take 10 mg in the am & 10 mg at night. I’ve spoken personally with one of the Optum Specialty Pharmacist & there’re many hispanics experiencing the same or worse symptoms than me while on Jakafi. I’m glad that you’re doing well. This is all new to me & I just wanted to to know if it’s worth to get a second opinion. My eldest daughter wanted me to go since I first got diagnosed, but now with what I’m experiencing, I told her yes. So, I’ll share later how my appointment went. Take care!