Nilotinib User Reviews & Ratings

• Ale...
• November 21, 2013

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."

• jud...
• Taken for 2 to 5 years
• April 21, 2013

Nilotinib for Chronic Myelogenous Leukemia "I was diagnosed with Chronic Myelogenous Leukemia in October of 2010. I was prescribed 600 units of Tasigna 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 Tasigna for 2 1/2 years now and am just starting to notice my hair is thinning. I was told I have to take it for life. I thank GOD every day for this medicine and will gladly endure the minor side effects in exchange for a longer life."

• Wol...
• Taken for 5 to 10 years
• August 8, 2014

Nilotinib for Chronic Myelogenous Leukemia "Started on Gleevec in 2005, I was having a 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."

• Fly...
• Taken for 1 to 6 months
• March 30, 2013

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."

• Mis...
• Taken for 2 to 5 years
• September 1, 2015

Nilotinib for Chronic Myelogenous Leukemia "I have been on Tasigna for just over 3 years now (300 mg 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 too 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."

• Anonymous
• August 3, 2011

Nilotinib for Chronic Myelogenous Leukemia "I started using Tasigna after a year of non-working Gleevec. It has brought me to a remission state. I 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 a great drug that has brought me the cure."

• ase...
• May 20, 2009

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 shortness of breath, an extra heartbeat, which turned into an ischemic problem at mid LAD."

• Anonymous
• May 13, 2011

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."

• mdr...
• Taken for 10 years or more
• March 18, 2020

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 in 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!"

• Jay...
• February 15, 2016

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 400 mgs 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."

• McL...
• March 25, 2010

Nilotinib for Chronic Myelogenous Leukemia "Effective drug. The 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."

• Mag...
• July 28, 2011

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 doctor was not familiar with what Tasigna could do."

• Dgr...
• Taken for 2 to 5 years
• November 14, 2018

Nilotinib for Chronic Myelogenous Leukemia "I take 2 (150 mg) 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 too 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 then eat earlier. The most important thing, though, is the medication is working, and my cancer is barely noticeable besides the side effects."

• sop...
• May 24, 2012

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 I have to change my medication again."

• Bob...
• Taken for 1 to 2 years
• November 9, 2019

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."

• Mou...
• Taken for 1 to 2 years
• January 25, 2021

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 150 mg 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 have caused this kind of leukemia. Apparently, the only indications are being exposed to nuclear fallout. I was not in Nagasaki or Hiroshima, but I have visited Utah's west desert, Skull Valley, a couple of times."

• Ian...
• Taken for less than 1 month
• November 30, 2016

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 envision 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 being this sick the rest of my life. Very happy and envious of all the success stories."

• Fat...
• Taken for 2 to 5 years
• October 24, 2014

For Chronic Myelogenous Leukemia "I've been diagnosed with CML in 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, abrupt mood swings, depression, bone pain (especially my back), muscle pain, and blurred vision sometimes. The ones that are tiring me are my hair loss and the bone pain."

• JWa...
• Taken for 5 to 10 years
• July 25, 2020

Nilotinib for Chronic Myelogenous Leukemia "I was on Tasigna since first approval (2007) due to side effects of Gleevec. I had good CML results with little seen side effects. In 2017, I started having atherosclerosis, leading to heart attack and 4 stents. They said it was directly related to the medication due to never smoking, my cholesterol was good, there were no other precursors for this. After which I had 2 strokes, which the team of doctors believe was a washout of this same condition. I now have to get a pacemaker. Not sure if this has anything to do with all of the above, but would never wish this on anyone."

• jj ...
• Taken for 1 to 6 months
• June 18, 2014

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."

• mha...
• November 10, 2010

For Chronic Myelogenous Leukemia "Been on Nilotinib for 2 years now, started at diagnosis - cytogenetic remission in 90 days - never sick with this medicine but it did cause skin rash, chest pain, and PVCs 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, PVCs went away. I do have some severe heartburn some nights, but a Zantac each night takes care of that. Very thankful for Nilotinib!"

• Sam...
• Taken for 2 to 5 years
• April 15, 2020

Nilotinib for Chronic Myelogenous Leukemia "Started Tasigna a little over 4 years ago. Have taken a 200 mg 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 of 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..."

• Act...
• June 8, 2019

For Chronic Myelogenous Leukemia "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. The 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 after taking the drug. Just be patient. 3. I got used to the regimen 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 a 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. It's 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."

• yak...
• 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 the 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 pre-cleanser for colonoscopies. My blood work is fine, and my CML is under control. I did not tolerate Gleevec too well, so this was my next option."

• CML...
• Taken for 1 to 6 months
• February 19, 2020

Nilotinib for Chronic Myelogenous Leukemia "Diagnosed with CML and a white count of over 750K (yes, you read that right). After 2 months, the white count fell to 5K (middle of the 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 (around $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."