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User Reviews for Nilotinib

Also known as: Tasigna

The following information is NOT intended to endorse drugs or recommend therapy. While these reviews might be helpful, they are not a substitute for the expertise, skill, knowledge and judgement of healthcare practitioners in patient care.

Learn more about Nilotinib.

Condition DownUp Reviews Compare Avg. Ratings DownUp
Chronic Myelogenous Leukemia 23 reviews 21 medications
   
8.0
Summary of Nilotinib reviews 23 reviews 8.0

Reviews for Nilotinib

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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."

   
9.0

WildCountry (taken for 2 to 5 years) October 16, 2016

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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

JaynaQT February 15, 2016

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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

Miss Jacqueline (taken for 2 to 5 years) September 1, 2015

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For Chronic Myelogenous Leukemia: "I have been on Tasigna since August 2012. I hit remission pretty quick. As for the side effects I am always very tired, I can't work a full day, as a result I can only work part time now. I have a full body pin point red rash that won't go away, and feel sick quite often. Other then that the meds are great"

   
10

Miss Jacqueline (taken for 2 to 5 years) February 16, 2015

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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."

   
8.0

Fatima madhi (taken for 2 to 5 years) October 24, 2014

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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

Wolfs Blood (taken for 5 to 10 years) August 8, 2014

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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

jj mn (taken for 1 to 6 months) June 18, 2014

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For Chronic Myelogenous Leukemia: "I was diagnosed in 2008 and was on Gleevec until 2013 when I lost control. On Tasigna I have a full body rash that gets worse with every dose. Tried reducing the dosage with no change. Even stopped taking it for ten days and rash was gone. However once I started again rash is back. The eating schedule is a pain, though death is not the result I'm looking for so it's worth the inconvenience. In Feb 2014 my cancer cells were 100% taking Tasigna it dropped to 0.7% by April 2014. Time will tell if this treatment continues to work. My main concern is Tasigna interacts with hundreds of meds. And being sick a lot, it's hard to find meds that don't."

MNOKgirl May 15, 2014

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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

Alexis7092 November 21, 2013

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Tasigna (nilotinib) for Chronic Myelogenous Leukemia: "Had a reaction ended up in hospital. Can't take it."

kenison July 30, 2013

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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

juditweety (taken for 2 to 5 years) April 21, 2013

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Tasigna (nilotinib) for Chronic Myelogenous Leukemia: "I have had a very positive experience with Tasigna. Very little side effects compared to the Gleevec. My body seems to tolerate it much better than the Gleevec."

   
10

sandyakk (taken for 1 to 6 months) March 30, 2013

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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."

   
9.0

Flycatcher (taken for 1 to 6 months) March 30, 2013

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Tasigna (nilotinib) for Chronic Myelogenous Leukemia: "Some joint pain at the beginning and constipation at first, but no problems afterwards"

   
10

Anonymous (taken for 2 to 5 years) July 25, 2012

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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."

sophieleo May 24, 2012

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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."

   
7.0

yakyak April 28, 2012

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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."

   
4.0

Anonymous August 3, 2011

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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----"

   
6.0

Magicmack July 28, 2011

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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."

   
9.0

Anonymous May 13, 2011

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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

mhalseid November 10, 2010

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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."

   
6.0

McLay March 25, 2010

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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."

   
1.0

aseli100 May 20, 2009

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Tasigna (nilotinib) for Chronic Myelogenous Leukemia: "After taking Gleevec, this medication is much easier on the stomach: however, the potential for heart problems and strict time schedule is of concern. Time will tell."

   
6.0

Glenng805 June 26, 2008

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