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Most voted positive review

35 People found this comment helpful

I am 63 yrs of age. I was diagnosed with CML in 1996 with a Jak 2 mutation. I was asymptotic for the first tens yrs although my blood counts were abnormal, I was prone to infections, I continued to work and live basically a normal life. Ten years ago my platelet count was over 1 million and I started hydroxyurea 500mg, 3 a day. After 10 yrs taking hydrea, my feet & ankles began to swell. One yr a...

Most voted negative review

1 People found this comment helpful

I was diagnosed at the age of 43 which is a few years earlier than the majority of cases reported throughout the U.S. its a rare disease which has no cure. I do have the jak2 mutation also a genetic foundation for myelofibrosis. I started jakafi in march 2012 and my blood counts improved very good but still have fatigue,weakness,bone pain,night sweats, and dizziness and frequent headaches affiliat...

Shared reviews and ratings

Shadi | 55-64 | Female | On medication for 1 to 6 months | Patient
5/28/2019
Condition: Myelofibrosis
Overall rating 3.0
Effectiveness
Ease of Use
Satisfaction

First month it was perfect from second month my spleen got as large as before 23 cm & i gained 16 kg in 5 months

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Melanie | 35-44 | Female | On medication for 2 to less than 5 years | Patient
5/20/2019
Condition: Other
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction

I was diagnosed with Polycythemia Vera (JK2 Cell mutation), 7 years ago the age of 33. For the first 4 years, my hemoglobin was controlled with phlebotomies. I have now been on Jakafi for about 3 years and it changed my life. The only side effects were weight gain and my cholesterol levels are elevated. My doctor refers to me as the energizer bunny. Without this medication I wouldn't be able to keep up my normal life.

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Anon |
8/7/2018
Condition: Other
Overall rating 2.3
Effectiveness
Ease of Use
Satisfaction

It sucks.

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Teri | 55-64 | Female | On medication for 1 to 6 months | Patient
5/14/2018
Condition: Other
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction

Polycythemia Vera. No more itching, all blood counts are normal again. 15 mg 2X day. Side effects: tinnitus, occasional fatigue, no more hip medication needed.

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Guy k | 75 or over | Female | On medication for 1 to 6 months | Patient
8/17/2017
Condition: Increased Red Blood Cells
Overall rating 4.0
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Ease of Use
Satisfaction
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Ilene | 35-44 | On medication for 6 months to less than 1 year | Patient
9/8/2016
Condition: Myelofibrosis
Overall rating 4.0
Effectiveness
Ease of Use
Satisfaction

I was diagnosed with PV 10 months ago when I was 39 years old (that's right, 39 years old!). It was confirmed right away that I have the JK2 mutation. Started treatment with Hydroxyurea, but it didn't help with the pain associated with the enlarged spleen and the blood count was not improving (still getting high values). My condition progressed to myelofibrosis and the doctor replaced Hydroxyurea with Jakafi. Started with 15mg once a day, then 20mg once a day, then 20mg twice a day to 15mg twice a day after getting normal blood counts. So far I've been taking Jakafi for about 8 months and my spleen reduced in size from 23cm to 20cm. It is still an enlarged spleen, but it doesn't hurt. The only side effect I have is weight gain. I have no other side effects. Read More Read Less

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Linda | 75 or over | On medication for 6 months to less than 1 year | Patient
8/9/2016
Condition: Myelofibrosis
Overall rating 4.0
Effectiveness
Ease of Use
Satisfaction

I was diagnosed 8 months ago with Myelofibrosis. I am 76 years old. The Jakavi has reduced the size of my spleen but my problem is that my platelet count is very low and also my hemoglobin. The Jakavi does not tackle this problem so I have transfusions every month. Hopefully soon, they will have some kind of cure for this disease. After my transfusions I do pretty well and I have tolerated the Jakavi very well.

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happy | 55-64 | Female | On medication for 2 to less than 5 years | Patient
3/18/2016
Condition: Myelofibrosis
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction

Jakafi gave me my life back. Started taking it four years ago after a splenectomy when it was discovered I couldn't tolerate Hydroxyurea and I stopped the medication. My platelets had soared to nearly 9 million. I am on a high dose of 50 mgs per day. I feel better than I have in many many years. I am able to work and lead an active life. At this point nearly all my blood counts are in the normal range. My only side effects are bouts of shingles and weight gain, both are worth the feeling of health.Read More Read Less

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JJ83 | 45-54 | Male | On medication for 6 months to less than 1 year | Patient
10/1/2015
Condition: Myelofibrosis
Overall rating 3.7
Effectiveness
Ease of Use
Satisfaction

I am a male, 45-54 years old. I was diagnosed with PV back in 04. This has now progressed to MF. I also have the JAK2 mutation. I have been taking Jakafi for several months now. It has definitely controlled my spleen but has done nothing for the other symptoms. My blood counts are also low...I believe too low. I have asked my doctor about this and waiting to hear what he has to say. Having said all of this, it does look like this drug is working for others so I don't knock that at all. All I can say is that it really depends on the patient!!Read More Read Less

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mother dear | 75 or over | Female | On medication for less than 1 month | Caregiver
9/29/2015
Condition: Myelofibrosis
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction

my husband was diagnosed with myelofibrosis in july after a stay in hospital for low hemoglobin he was anemic and had to have three blood transfusions.he was so weak he had lost 40 lbs because he felt full all the time.his spleen was swollen,doc prescribed jakafi for him.I see a world of difference in him since he started on this drug.he's only been on it for one week he is feeling much better.I hope it continues to work for him he is eating now and he has a little more energy and a lot less pain in his bones.but be warned this medicine is very expensiveRead More Read Less

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Anonymous | 55-64 | Male | On medication for 6 months to less than 1 year | Patient
8/2/2014
Condition: Myelofibrosis
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction

Diagnosed with Myelofibrosis after a visit to the ER room where it was noted that my blood counts (WC and PL)were very high. I do have the Jak2 mutation.. My doctor started me out on Jakafi about Sept. of 13. Experimented with the dosage, and have settled to 20mg tables taken twice daily. Overall, very pleased with the drug. I have noticed that I can... if not careful gain weight, so I watch what I eat and have been able to maintain a weight that is acceptable, I guess. Still once in a while will have night sweats, no big deal. I do feel like I am tired more often, but it is not that bad either so once again no big deal. Dizziness, every once in a while I have a very slight feeling of being dizzy. I have always been able to handle it by just slowing down and it passes very quickly. Over all... I am very satisfied with the drug. Read up on the condition, with out it I am not sure how long I could have stayed in this game. I consider it a maintenance drug and will most likely be on it for the rest of my life. Read More Read Less

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Anonymous | 55-64 | Female | Patient
11/18/2013
Condition: Myelofibrosis
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction

I am 63 yrs of age. I was diagnosed with CML in 1996 with a Jak 2 mutation. I was asymptotic for the first tens yrs although my blood counts were abnormal, I was prone to infections, I continued to work and live basically a normal life. Ten years ago my platelet count was over 1 million and I started hydroxyurea 500mg, 3 a day. After 10 yrs taking hydrea, my feet & ankles began to swell. One yr ago Jakafi was approved. My feet and ankles returned to normal with Jakafi. I am 5'8" and weighing 155. I now weigh 175. My appetite has increased. Everything I eat adds weight. My blood work is good. I do require more sleep than my husband. I feel fine. I really am unhappy about the weight gain. The Jakafi has been a miracle drug for me. I would be totally happy if this weight problem had not happened. My doctor says I have less cells to burn calories. Good luck to anyone reading this post looking for answers. I hope my words will be useful to someone. I have had no negative side effects from this medication--rash, constipation, headaches, insomnia, swollen feet& ankles, dizziness. I read someone experienced urinary tract infections from the Jakafi. I have not had the urinary tract infection problem. I feel good & I am putting on weight.Read More Read Less

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Anonymous | 45-54 | Female | On medication for 1 to 6 months | Patient
10/31/2013
Condition: Myelofibrosis
Overall rating 4.3
Effectiveness
Ease of Use
Satisfaction

I was diagnosed with myelofibrosis in July 1013. Jakavi has been great at reducing the size of my spleen but I still have all the other symptoms.

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Anonymous |
1/26/2013
Condition: Myelofibrosis
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction

within one week I began to regain strength and am now virtually back to normal

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mace | 45-54 | Male | On medication for 1 to 6 months | Patient
6/7/2012
Condition: Myelofibrosis
Overall rating 3.3
Effectiveness
Ease of Use
Satisfaction

I was diagnosed at the age of 43 which is a few years earlier than the majority of cases reported throughout the U.S. its a rare disease which has no cure. I do have the jak2 mutation also a genetic foundation for myelofibrosis. I started jakafi in march 2012 and my blood counts improved very good but still have fatigue,weakness,bone pain,night sweats, and dizziness and frequent headaches affiliated with the jakafi. recently suffered a heart problem waiting for answers on this issue. havent been able to work and because Iam not a drug addict or a convicted felon I have been dinied disability. Happy the jakafi is working on my bood counts but not so on the physical problems to get me to work again. good luck with your experiences while on jakafi.Read More Read Less

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