Generic Name: Jakafi (ruxolitinib)
For Polycythemia Vera "A lot of people have experienced weight gain on Jakafi, and I have too. For me, I only lost weight on this medication by eating low carb with some form of moderate exercise when able. I also found I slept better and generally felt better on a low carb diet while taking Jakafi. Hope this helps someone else struggling with weight gain after starting this."
For Polycythemia Vera "This is the third Rx I've had over 10 years to treat polycythemia rubra vera. Started for drug trial for 87 weeks. Now on an Rx. I've had 0 phlebotomy since on Jakafi. Itching is nearly nonexistent. I can sleep well. Mood has improved. Generally, Jakafi has given me my life back!"
For Polycythemia Vera "I have been on Jakafi for 10 months for Polycythemia Vera. It has reduced my itching, bone and joint pain, fatigue and my counts are actually normal for the first time in decades! I have gained about 5 lbs on it but no other significant side effects. I am taking a very low amount ( 5mg 2x day) and maybe that's why I haven't gained a lot of weight. This medication has literally given me my life back."
For Polycythemia Vera "I have polycythemia vera and myelofibrosis. Ten years ago I had 2 weeks left to live I was put on 15mg of Jakafi twice a day. No more phlebotomy. All my crazy blood results moved steadily to normal. I have never had any problem until recently. I've had ten years of a high-quality existence with this pill. Not one single side effect. And my 28-pound spleen disappeared. I was wasted when I started this drug (from years of blood removal). Grew back my bones, hair, weight, energy, stamina, and appetite. After 10 years of health, I am having episodes of what feels like UTI. I am eliminating any other bladder irritants, taking it earlier (6 am-6 pm) to be eliminated more before bedtime, and drinking appropriate amounts of water-- Even on shopping days, beach days, etc."
For Polycythemia Vera "I started on a higher dose, and my counts came down and itching stopped, but I had weight gain! Yuck! Migraines, loud constant ringing in ears, joint aches and swelling, dizziness. Then, I tried a lower dose, 5 mg 2 x day, and side effects lessened greatly, but my counts increased. I’m off of it and on Hydrea, and trying to lose the weight now (10 lbs). To add, the price of Jakafi, ruxolitinib, is RIDICULOUS."
For Polycythemia Vera "Been taking Jakafi for 9 months... 10 mg 2x daily. Just now, counts slightly increasing, so my doctor is adding another 5 mg daily to my dose. This med has improved my life significantly... my over-functioning has improved 100%, but still with some issues. It's scary to change medications. I hope my comment will give others courage and hope... if their doctor thinks it's worth giving it a try."
For Polycythemia Vera "I am 57 yrs., I have had PV for well over 20 years. I have had phlebotomies and then Hydrea and now have been on Jakafi for a year and a half. My overall experience with Jakafi is that it gave me my energy and life back. My joint pain disappeared immediately and my energy level was amazing! I was on 5 mg 1x day to start and then went up to 5mg 2x day, which I am on now. I have gained about 10 lbs, even on this low dose.Then about 6 months ago I got Shingles, I believe, from the Shingrix vaccine I had just gotten, and since then, I have not felt well. I get sick a lot and in the past 6 months, my joint and bone pain is so much worse, almost like pre-Jakafi. The meds are working well for all blood counts right now so I am on the fence about stopping the med."
For Polycythemia Vera "Took Jakafi for approximately 10 months. My itching was completely cleared up. During this entire time my bowel movements were intense. I had cramping in my stomach most mornings. Initially my dosage had to be adjusted because all of my blood levels were very low. I had developed cytopenia. Was taken off Med for 6 weeks and resumed. The last straw for me was the aching I experienced in all of my joints. Medication states a side effect can be arthralgia. Well, I got it. Had to get cortisone injections in both thumb joints, both knees, right hip and shoulder. I refuse to go back on this medication. Wish anyone able to take this Med good luck"
For Myelofibrosis "I have post-essential thrombocythemia myelofibrosis. Jakafi has my platelet count and white cell count normal again. However, it caused my red cell count to go way too low, and so I am on Procrit shots to avoid transfusions. I am very fatigued after the slightest physical activity. I gained about 10 pounds and get pimples from it. Jakafi instantly got rid of my joint aches and pains."
For Myelofibrosis "I first tried Jakafi for 3 months, and my stomach rebelled. After 6 months of stopping it, I started again at the minimum dosage (5mg) once a day. I am now at twice daily, and no further issues except that I have had 7 lesions on arms and legs that look like a bull's eye, enlarge to a quarter size, scab over with a thick, shiny yellow waxy coating that turns light brown before it starts to crumble. It takes about a year to return to normal. My numbers are much better with Jakafi, so I tolerate the lesions."
For Polycythemia Vera "I am 74 yrs old and have polycythemia vera (PV) since I was 62. Was on Hydrea and phlobotomy every 3 mos. Was seriously very depressed and low energies. On Jakavi since May-2016 and no more phlobotomy. Now taking Jakavi 25mg twice a day. My life is back and feels like not having PV. Med is expensive at 25mg because I need 20+5 mg. Cost is doubled because they don't make 25mg pills!"
For Polycythemia Vera "I have been on Jakafi now for 7 months. I have had major weight gain (25lbs) and migraine headaches every day. Before I started my counts were over a million and they are only down to 800,000. So for me this isn't working. The side effects and losing days to headaches are not worth taking it."
For Polycythemia Vera "I've been enjoying not feeling awful all the time. With Jakafi I have had no problems with skin blisters when I am in sunlight, as I did with the previous medication. It is hard to say which med gives me vertigo issues the most. I suppose the dizziness is mild with Jakafi. In general, I have more energy and less stress over shortness of breath - until recently, again. I don't know if the current fatigue I have suddenly again, is due to the medication dose or if I am experiencing another drug side effect or my body is simply old and wearing out. I know that Jakafi has given me my life back again. But, currently, my body is not in balance - I'm not sure why: chest pain, increased heart rate, higher BP, shortness of breath, fluid retention, weight gain, fluid gain, headache, and low kidney function. My cholesterol went up - and not sure why. I am currently being worked up, again for a cardiac issue. For a year however, I felt so much better than I did without Jakafi."
For Polycythemia Vera "I have been taking this medication, Jakafi for 10 months. Once correct dosage was figured out, I have experienced no itching and there has been no need for phlebotomy treatments. Downside to taking this medication is that for days at a time I have trouble with my bowel movements and pain and cramping in my stomach. This happens when I eat healthy, broccoli, kale, multi grain bread. Also when I eat fried foods."
For Polycythemia Vera "I just don't understand, I've been on this med about 2 yrs and my Dr just increased my dose to 20 mg b.i.d. My platelet count is still thru the roof ! I changed my diet and swallowing these pills just as directed! All I get is bad reports and disappointing agitated comments from my Dr ! I give up !"
For Polycythemia Vera "I was diagnosed with polycythmia vera in 2007. Itching, terrible itching, has been my main complaint and hydroxyurea didn't help. I was taking Atarax four+ times a day plus getting light therapy 2-3 times a week. With Jakafi, I take Atarax 1-4 x day, and don't need light therapy. However, when it's really warm or allergens are in the air, I take Emend off-label. Side effects of Jakafi: more susceptible to infection, possibly anemia, possibly higher erythropoietin levels."
For Myelofibrosis "I am on Jakafi and all was going well until my Doc decided to prescribe 5 mg tablets. Well the price jumped exponentially to well over double for the same 15 days and same mg dose This he thought was needed for small adjustments. I was shocked to see my benefits eaten up almost instantly for one month of medication. I am furious and this medicine does not offer that kind of money relief. I am looking into transplant and warning others ..NEVER GET THE 5 mg Tablets!! over 34, 000 for one month prescription. No wonder my insurance is over 1,000 per month just for me..SMH"
For Polycythemia Vera "I have been taking Jakafi for 8 months for JAK-2 negative polycythemia vera, which I've had since 2009. Before this drug, I was on phlebotomy-only treatment which left my iron levels nearly non-existent. I felt tired all of the time, I felt depleted all of the time. Since starting this medication, my blood counts have become normal, I am able to take iron and so have come to feel very near normal energy and since of wellness again. My only negative side effect is a 5 pound gain. We are still figuring out the proper dose, I began with 5mgs twice a day, but my phlebotomies increased from every 3 or 4 months to every 1 to 3 weeks. I am now on 10mgs twice a day, and my phlebotomies are stretching out to every 3 to 8 weeks. I am hoping the phlebotomy need will subside. After 10 + years of feeling ill, the cost and weight gain are worth my feeling of health."
For Myelofibrosis "My appetite has returned and I eat much more like I used to. This has helped me gain weight. I have regained a bit of my energy. I also have side-effects: reflux, gas, some diarrhea, small red spots on my skin, lots of bruising."
For Myelofibrosis "Been on it for the past 5 years, starting with 5 mg 2x a day and now 25 mg 2x a day, which is throwing off my hemoglobin and lowering platelets. Enlarged spleen 23 cm lets me know when it's time to up the dosage. I have gained over 20 pounds, and a lot of it is swelling, looking pregnant, but I'm a dude. This past week I had to stop taking it for two days because my hemoglobin/platelet count dropped too low (I had to stop shaving and do no type of manual labor). The side effects were tough: severe migraines - had to black out my room, dizzy, faint, nausea, balance/coordination issues, brain fog, laying in bed for most of 48 hours. I had to go back on it because my spleen was exploding in size and hurting really bad. I need to get off of it and find a newer drug or clinical studies."
For Graft-versus-host disease "So far it seems to be working. If I forget to take it I get a definite onset of itchy skin with a very marked response and regular and multiple bowel movements in the mornings. I am not sure if it is Jakavi related, but I had a stroke. I have found that my blood levels definitely stabilized and GvHD skin flares reduced quickly too. I do have regular and severe cramps in the calf in the mornings."
For Polycythemia Vera "It has worked very well for me. However, I have gained quite a bit of weight since taking it."
For Polycythemia Vera "It’s either have to get a phlebotomy every month and become anemic or take Jakafi and be fat!"
"My platelets were over 800,000, and I could not tolerate hydroxyurea. It has kept my platelets in the low 500,000s. It is working great for over 4 years."
For Myelofibrosis "Been on Jakafi for over a year. Twice a day varied from 5 to 20 Mg Frankly it has done little or none for me."
