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User Reviews for Nilotinib

Also known as: Tasigna

Condition Avg. Rating Reviews Compare
Chronic Myelogenous Leukemia  
8.1
37 reviews 10 medications

Reviews may be moderated or edited before publication to correct grammar and spelling or to remove inappropriate language and content. Reviews that appear to be created by parties with a vested interest in the medication will not be published. As reviews and ratings are subjective and self-reported, this information should not be used as the basis for any statistical analysis or scientific studies.

Reviews for Nilotinib

Balajee · Taken for 1 to 6 months March 30, 2021

Tasigna (nilotinib) for Chronic Myelogenous Leukemia: “This is my third month of having Tasigna 600mg/day, felt every symptom that are mentioned but all gone. I feel nauseated from last three days and it is not going anywhere. Though I have felt it earlier but it was gone. I will get a PCR test of BCR-ABL at the end of the third. Let's see, hopefull Molecular response will be good.”

9 / 10
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Mountainman555 · Taken for 1 to 2 years January 25, 2021

Tasigna (nilotinib) for Chronic Myelogenous Leukemia: “Tasigna has been a very effective medication for my CML. (chronic myeloid leukemia). My BCR/ABL counts have quickly dropped and are now hovering from .3 to .06 parts per X. Fortunately for me, any side effects from the medication are not felt. I have been taking two 150mg tablets twice daily since October 2019. I sort of wish some researcher would ask me about my life history or something to see what may of caused this kind of Leukemia. Apparently the only indications are being exposed to nuclear fall-out. I was not in Nagasake or Hiroshima. But I have visited Utah's west desert, Skull Valley a couple of times.”

10 / 10
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BD · Taken for 5 to 10 years January 23, 2021

Tasigna (nilotinib) for Chronic Myelogenous Leukemia: “Easy to use. I take one capsule twice a day. I have no side effects from the drug. I’m fortunate to have VA benefits to pay for it as the actual cost would make it prohibitively expensive for most.”

10 / 10
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Frequently asked questions

Alexis7092 November 21, 2013

Tasigna (nilotinib) for Chronic Myelogenous Leukemia: “I was diagnosed in 2009 and started taking it while it was just a study pill. I did get joint pain pretty bad. I was in remission about a year later. The joint pain was bothersome and I had to take it for life. Well I stopped taking it in 02/2012. I told myself I was a lot better. Well guess what my leukemia is back. I need to go see my doctor again and need to get back on it. So everyone please don't stop taking it like I did. I hope and Pray that I will fight it again and win again.”

10 / 10
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juditweety · Taken for 2 to 5 years April 21, 2013

Tasigna (nilotinib) for Chronic Myelogenous Leukemia: “I was diagnosed with Chronic Myelogenous Leukemia in October of 2010. I was prescribed 600 units of Tasinga per day - 300 AM, AND 300 PM. I was in remission in 12 days - thank GOD. I am on Medicare and get help with my co-pay from PSI. I have mild nausea when I first take the pills, mild constipation and some shortness of breath, but I also have COPD. I have, been taking Tasinga for 2 1/2 yrs now and am just starting to notice my hair is thinning. I was told I have to take it for life. I thank GOD everyday for this medicine and will gladly endur the minor side efforts in exchange for a longer life. ”

10 / 10
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Wolfs Blood · Taken for 5 to 10 years August 8, 2014

Tasigna (nilotinib) for Chronic Myelogenous Leukemia: “Started on Gleevec in 2005, I was having hard time with side effects. Sometime early 2007 I heard they were working with Tasigna, It was under a number at that point. I asked my Doctor if I could get on the study. After some testing and paperwork, I finally got on it. Great, I had been told prior that I would never reach molecular remission. After several months on Tasigna, I received a phone call at my house late one evening. My Doctor was surprised, and happy to tell me, there were no signs of my leukemia and I was in a molecular remission. At That time they still had me on 800 mg a day. I had the typical side effects with light rash, some hair loss and some bone pain. Several years later I was reduced to 600 mg and am on that now.”

10 / 10
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Flycatcher · Taken for 1 to 6 months March 30, 2013

Tasigna (nilotinib) for Chronic Myelogenous Leukemia: “I have been on Tasigna since being diagnosed in November 2013. Given how I felt at the point of diagnosis, I am so happy with Tasigna. I have minor side effects and my energy level has been great. Early results are great. Time will tell.”

9 / 10
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More FAQ

Miss Jacqueline · Taken for 2 to 5 years September 1, 2015

Tasigna (nilotinib) for Chronic Myelogenous Leukemia: “I have been on Tasigna for just over 3 years now (300mg x 2 times a day) Tasigna worked for me within a few weeks I have been in remission for basically the entire 3 years. As for the side effects, I feel sick to my stomach, tired, severe leg and arm pain, I can't walk to long without needing a break, I went from working full time to not working at all because I am so tired all the time.... but hey I am in remission and alive so is all the above really a problem? Nope”

10 / 10
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Anonymous August 3, 2011

Tasigna (nilotinib) for Chronic Myelogenous Leukemia: “I started using Tasigna after an year of non working Gleevec. It has brought me to remission state. I am and my doctor are very happy. Yes rose comes with thorns. It has affected my hearing and I have redness and crusting around my head which turn into painful pimples. But still it is great drug which has brought me the cure.”

4 / 10
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aseli100 May 20, 2009

Tasigna (nilotinib) for Chronic Myelogenous Leukemia: “I used this medicine for 3 months, after 6 years of using Gleevec/Glivec. Though it was effective at 3 months, it improved RBC and WBC, reduced pain side effects at rest in comparison with Glivec, I was further restricted in activity than with Glivec. I developed short breathing, extra heart beat which turned into ischemic problem at mid LAD.”

1 / 10
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Anonymous May 13, 2011

Tasigna (nilotinib) for Chronic Myelogenous Leukemia: “2 years on Gleevec with minimal positive effect and maximum side effects. 3 months on Tasigna and swelling-gone, leg pain-gone, nausea-gone, I feel good. Tests show much improvement and my Doctor is now very optimistic. Twice a day regime and eating times are small problems. My libido is back.”

9 / 10
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JaynaQT February 15, 2016

Tasigna (nilotinib) for Chronic Myelogenous Leukemia: “After Gleevec quit working after five years, and no remission, Tasigna has been a wonderful medicine. Thinning hair, a little hip pain and some blisters/itching...but so much blessing to have achieved molecular remission in 4 mos. and continued for 3 yrs. now. Doc has reduced my dose from 600 to 400mgs to see if rashes stop and pain subsides. hopefully, won't have to go back up. The cost is insanity...good thing I get assistance or I wouldn't be here. ”

10 / 10
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Magicmack July 28, 2011

Tasigna (nilotinib) for Chronic Myelogenous Leukemia: “The timing for eating is a pain. I have become hyperthyroid as a result of this medicine, and my hands started shaking, and I lost 40 pounds. I had been hypothyroid before! I like the weight loss, but the hyperthyroidism has caused digestive problems, and my eyes bulge a bit. Have suffered drug interactions with Cipro (heart) and maybe Lexapro (acute Achilles tendonitis). Unfortunately,my Dr was not familiar with what Tasigna could do----”

6 / 10
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McLay March 25, 2010

Tasigna (nilotinib) for Chronic Myelogenous Leukemia: “Effective drug, 12 hour thing is a pain as is the eating discipline. Must affect hemoglobin levels as feeling tired is an issue. Any effort i.e., walking up a slight incline can make you feel nauseous. Can't complain because it works for me.”

6 / 10
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sophieleo May 24, 2012

Tasigna (nilotinib) for Chronic Myelogenous Leukemia: “After 18 months of taking Gleevec without having the best results, taking Tasigna was a gift as the side effects cannot be compared with those of Gleevec. Although after taking it for more than a year, my BCR ABL exams are going up and down and I suppose Ii have to change my meditation again.”

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mdr007 · Taken for 10 years or more March 18, 2020

Tasigna (nilotinib) for Chronic Myelogenous Leukemia: “Been taking Tasigna over 11 years now. Been in complete remission for almost the entire time. Worked quickly and amazingly well. No side effects to speak of. Tried going off it once but CML returned. Went back on Tasigna and quickly was back I complete remission. A wonder drug to be sure. Started at age 41 and take one 200 mg capsule daily. I am lucky and grateful. Best of luck to all those with CML!”

10 / 10
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Dgreen71 · Taken for 2 to 5 years November 14, 2018

Tasigna (nilotinib) for Chronic Myelogenous Leukemia: “I take 2 (150mg) in the morning and 2 at night 12 hours apart. So far my side effects have been minimal. I feel bloated sometimes, but the fatigue seems to never go away. The hardest part of taking this medication is the timeframe with taking meds and eating. In the morning it's not to bad, but in the afternoon, it's difficult, because my kids and wife are all hungry and I have to wait to eat for an hour after I take my meds. Most of the time I just reheat and the eat earlier. The most important thing though is the medication is working and my cancer is barely noticeable besides the side effects.”

8 / 10
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jj mn · Taken for 1 to 6 months June 18, 2014

Tasigna (nilotinib) for Chronic Myelogenous Leukemia: “Brought my BCR ABL levels down where Gleevec and Sprycel didn't, at least for my specific situation. I had to waste 9 months of treatment to find out Tasigna was the right medicine for me. Lucky I worked so hard to fight for it that is what it takes. Works great for ph refractory on other medicines before transplant.”

10 / 10
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Fatima madhi · Taken for 2 to 5 years October 24, 2014

For Chronic Myelogenous Leukemia: “I've been diagnosed with CML on March of 2012. I've been on Tasigna ever since. The results were great but a few side effects have been bothering me, such as, hair loss, aprupt mood swings, depression, bone pain (especially my back), muscle pain, blurred vision sometimes. The ones that are tiring me are my hair loss and the bone pain.”

8 / 10
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Bob · Taken for 1 to 2 years November 9, 2019

Tasigna (nilotinib) for Chronic Myelogenous Leukemia: “After a year on sprycel it wasn't working so they switched me over to tasigna, it brought my bcr/abl levels down more in 3 months than the whole year on the sprycel, however the 800 mg/day was too much for me and I was neutropenic for several months and needed neupogen injections which was not fun, I've been able to tolerate the 600 mg dosage without any major issues beyond the standard fatigue and bone pain, unfortunately I've yet to reach a major molecular response but hopefully that will happen in the next few months.”

8 / 10
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mhalseid November 10, 2010

For Chronic Myelogenous Leukemia: “Been on Nilotinib for 2 yrs now, started at diagnosis - cytogenetic remission in 90 days - never sick with this medicine but it did cause skin rash, chest pain and PVC's in my heart rhythm, also zapped my energy. I started taking a full vitamin regimen and extra potassium and magnesium pills and my energy came back quick and strong also, PVC's went away. I do have some severe heartburn some nights but a Zantac each night takes care of that. Very thankful for Nilotinib!”

10 / 10
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ActiveLife June 8, 2019

For Chronic Myelogenous Leukemia: “Hi, I have been diagnosed with CML at the end of 2018 and have been on Tasigna for about 6 months now. I have a very active lifestyle. While the drug seems to be working medically, there are side effects, here' s what I can say so far to help others: 1. First two weeks were very rough and I had all sorts of bad side effects /mostly pain/, however it all went away! 2. Rash. It is a common side effect. I had it too, but it went away about 2-3 months of taking the drug. Just be patient. 3. I got used to the regime of not eating 2 hours before and 1 hour after, it is not that bad. I do 4 am and 4 pm. 4. I work full time and I still have very active lifestyle including hiking, gym etc! 5. Hair-loss. This is the only recent side effect that is worrying me. Each time I wash or brush my hair a lot comes out and new is not growing back. Its been like that for at least 3 months now and I found no remedy so far. If anyone has any experience with that, please share.”

9 / 10
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Sam · Taken for 2 to 5 years April 15, 2020

Tasigna (nilotinib) for Chronic Myelogenous Leukemia: “Started Tasigna a little over 4 years ago. Have taken 200mg dose twice a day ever since. Brought me from 56% cancerous white blood cells to 2% in just a few months, molecular remission within about 1 year and has kept me there . Still suffer from insomnia, bone and muscle pain, but rashes went away after a couple years. Neuropathy in feet and toes but I worry that peripheral artery disease is occurring also... Even with breaks (1-2 weeks) I never feel any better so the breaks are hardly worth taking. Novartis patient assistance program took care of me for the first year and the Medicaid ever since with nothing out of pocket thank God. TASIGNA HAS KEPT ME ALIVE...”

9 / 10
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CML Dude · Taken for 1 to 6 months February 19, 2020

Tasigna (nilotinib) for Chronic Myelogenous Leukemia: “Diagnosed with CML and a white count of over 750K (yes you read that right). After 2 months white count fell to 5K (middle of normal range). The two "fasting windows" per day that are required are a hassle but you get used to it. Light to moderate bone pain occasionally but most days there is none. Slightly dry skin on and off but not too bad. Insurance covers (UHC) with a STEEP co-pay (arond $1300 per month!) but that makes me hit max out of pocket (MOOP) by March of every year so in that respect no more expensive than anything else since I'd hit MOOP anyway.”

9 / 10
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IanBench · Taken for less than 1 month November 30, 2016

Tasigna (nilotinib) for Chronic Myelogenous Leukemia: “Started Tasigna on Thursday morning. I'm diabetic and became severely hypoglycemic on Saturday. Stopped taking diabetes meds, and that improved, but I had a stomach ache and nausea so bad I was dry heaving for 3 solid days, because I couldn't eat. Went 3 days without sleep because I was curled up around the toilet. I stopped taking it on Monday evening. My reaction to this drug felt like what I invision chemo to be. I go back to my doctor tomorrow to come up with an alternative treatment plan. I'm now scared to start another med, for fear of similar reactions, and I don't want to imagine this sick the rest of my life. Very happy and envious of all the success stories.”

1 / 10
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yakyak April 28, 2012

For Chronic Myelogenous Leukemia: “Loss of hair. Restlessness, insomnia, chronic fatigue, diplopia, Bell's Palsy recurring, skin rashes and sores, depression, mood swings, vision blurred at times. The fatigue is the biggest problem right now. Had the summer from hell with diplopia and Bell's Palsy. The Bell's Palsy started on the left side and when that calmed down jumped over to right. Months of pain like someone drilling behind my ear and along the side of my face. My oncologist said it wasn't the nilotinib. I say it was a reaction between Purgodan and Nilotinib. Purgodan being a precleanser for colonocopies. My blood work is fine and my CML is under control. I did not tolerate Gleevec too well so this was my next option.”

7 / 10
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WildCountry · Taken for 2 to 5 years October 16, 2016

For Chronic Myelogenous Leukemia: “Been on 800 mg daily dose of Tasgina since November of 2014. During my last visit with my hematologist no significant trace of BCR-ABL was detected, so the stuff has worked extremely well. Side effects are minimal and tolerable: hair thinning, dry skin, cystic acne, reoccurring/intermittent eczema on palms of hands -- controlled with Kenalog cream, reoccurring/intermittent Allergic Conjunctivitis and itchy hay fever-like itchiness around and in eyes, very infrequent headaches, mildly changed digestion, and frequent daytime tiredness. Cost of this drug is obscenely high. Glad to have help acquiring it.”

9 / 10
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Anonymous · Taken for 5 to 10 years September 16, 2020

For Chronic Myelogenous Leukemia: “This is my second review of this drug. Started taking the medication in 11/14. It is now 9/20, so about 6 years. The medication has put me into CMR, or Complete Molecular Response which means that the PCR test does not find the BCR-ABL gene in my blood. All symptoms have remained consistent: hair thinning, dry skin, cystic acne, intermittent eczema on palms of hands, intermittent Allergic Conjunctivitis and itchy hay fever-like itchiness around and in eyes, very infrequent headaches, mildly changed digestion, and frequent daytime tiredness. The most troubling side effect is leg pain that can be pretty bad when I work out really hard. Rx pain meds help with that. All in all, very thankful for this medication, it has literally saved my life.”

10 / 10
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This information is NOT intended to endorse any particular medication. While these reviews might be helpful, they are not a substitute for the expertise, knowledge and judgement of healthcare practitioners.