Azacitidine for Myelodysplastic Syndrome User Reviews

Brand names: Vidaza, Onureg

Azacitidine has an average rating of 5.4 out of 10 from a total of 16 reviews for the treatment of Myelodysplastic Syndrome. 38% of reviewers reported a positive experience, while 38% reported a negative experience.

Azacitidine rating summary

5.4 average rating out of 10

16 ratings from 18 user reviews.

Compare all 13 medications used in the treatment of Myelodysplastic Syndrome.

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9		6%
8		6%
7		0%
6		19%
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4		6%
3		6%
2		0%
1		31%

Reviews for Azacitidine

Anonymous
Taken for 1 to 6 months
September 9, 2012

Vidaza (azacitidine) "My dad had MDS and then evolved into Leukemia (AML). He had traditional chemotherapy but had severe complications. He is going into his 4th cycle of Vidaza and he is doing great. His blood cell counts are lower some days of the month, but they recover almost to normal. He had trouble with platelets. At the start, he had a lot of transfusions (by now he has almost had 200) but in the last months, there have been fewer, a lot fewer. And the doctor considers that Vidaza starts working after the 6th cycle, so his platelet count will increase. The doctor considered a bone marrow transplant, but he decided that since he is in total remission and doing well with Vidaza, they will wait until the 9th cycle and decide then. He has no side effects but a little fatigue."

10 / 10

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95 Report

Joy...
Taken for less than 1 month
June 27, 2015

Vidaza (azacitidine) "My husband was diagnosed with MDS, no symptoms. He worked out at the gym 5 days a week, had just retired, was enjoying life. At Dr.'s urging, he started on Vidaza. This was supposed to prevent MDS from going into leukemia and buy time to prepare for a bone marrow transplant. He took daily treatments for 5 days, was sick with flu-like symptoms, then had breathing complications. The following week, he is in excruciating pain, was hospitalized in ICU for 2 weeks, died a horrible death. Pain that no amount of pain meds would control. His last 2 days were in hospice, so that he could receive the highest doses of narcotics that can only be administered at the end of life. The death certificate read 'multi-organ failure.' Vidaza destroyed his internal organs."

1 / 10

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53 Report

Anonymous
September 26, 2009

Vidaza (azacitidine) "I have just started my 2nd month of 7 days of injections. I have had no adverse reactions, except the injection sites get very red and later peel. My white blood cells went down and then started back up. My platelets and hemoglobin are quite low, but so far no blood transfusions. I am told each time they will make white blood cells go lower."

3 / 10

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74 Report

joh...
May 17, 2009

Vidaza (azacitidine) "I have taken it for 4 months so far. It is now down to 5 days instead of 7 per month. The shots are painful in several ways. Went to IV after a couple of months. The only good result I've had so far is no transfusions. In the fourth month, I developed flu-like symptoms despite constant vigilance. I have been down for 9 days with this."

4 / 10

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73 Report

Han...
Taken for 10 years or more
September 16, 2020

Vidaza (azacitidine) "I have been on Vidaza treatment for eleven years now. Started out with injections every four weeks for a while. Then every five weeks and eventually every eight weeks, which I am currently doing. My hemoglobin and platelet counts are a little low but stable. Only side effects that I have are occasional nausea or vomiting and diarrhea. If I take an anti-vomiting pill after each treatment, I have no side effects. I would say that the treatments have been very successful."

10 / 10

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25 Report

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jcs...
April 15, 2014

Vidaza (azacitidine) "Injection site sore for weeks. If in belly, get it beyond the belt line. If in underarm, get injections 2 in apart. Day 1, little effect, day 3, start of weakness, day 5, make sure couch fits. 3 days after the last injection, start of recovery. Day 5, 2 pints of blood does wonders, day 14 after injection, just hanging on. Maybe another blood pint to help. Day 1, oh gosh, here we go again. No vomiting, just strength crashing."

6 / 10

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39 Report

Ton...
April 3, 2016

Vidaza (azacitidine) "I was diagnosed with CMML approximately 3 years ago, and treatment with Azacitidine started 17 months ago. It has stopped me from transforming to AML, and I even self-inject when the oncology department is closed. So once a month, I do the subcutaneous injections. My blood levels are not too bad at all, but once when I was off the Azacitidine for five weeks, I was going downhill rapidly, approaching AML. I was very lucky to be matched with an unrelated bone marrow donor and was supposed to have the transplant in December 2015, but because my heart is not so good (Atrial Fibrillation), there is concern about it standing up to the trauma of transplant. So I'm really hoping that the Azacitidine keeps on doing the business, otherwise, it may very well be my demise."

9 / 10

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30 Report

Let...
March 13, 2017

Vidaza (azacitidine) "Through routine blood check-up, I was diagnosed with myelodysplastic syndrome with no symptoms at all but with blasting of cells 18, and after 8 months from having injected Vidaza, blasting of cells now 0. As I am in remission, do I still have to go with the stem cell transplant?"

10 / 10

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27 Report

My...
January 21, 2021

Vidaza (azacitidine) "My dad passed away after 5 days of Vidaza injections. He was doing okay all week long, except the injections gave him a very bad headache. RBC coming up to almost normal, WBC on the low side. 1/15/21 he was doing great, ate dinner, laughing, no problems. He went to bed around 9:30 PM. Approximately 12:15 AM he started vomiting multiple times, finally went back to bed. Vomited blood in the middle of the night. When my mom went to check on him in the morning, he was not breathing or had a pulse. The paramedics were able to get his heart beating again, however, he was unconscious and bleeding internally, and never woke up. He spent 2 days in the CCU, where we were also told he had multi-organ failure. He passed on 1/19/21. This drug is bad for him, and it made my dad pass away after 5 days of treatment. We were not told of any of the side effects or even told the name of the drug my dad would be getting, if we would have known it would finish him off, we would have never let him take this treatment. Now we are planning his funeral."

1 / 10

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14 Report

nan...
Taken for 6 months to 1 year
April 5, 2023

Vidaza (azacitidine) "I was diagnosed with myelodysplastic syndrome soon after having gone through a bout of Covid in 2022. I was told to get help quickly from an oncologist, which I did in a different state from where I was living. After the move, it was several months--October--before I was started on Azacitidine injections . At first there was no problems other than skin redness and tenderness in the injection sites. My first few sets of five days on, skip the weekend, then two final injections went well, then we had to give me more time off over the new year and my numbers improved more than before so a five week interval was used for the next few cycles. But after five cycles I now am having nausea and vomiting every night within four to six hours after the injections. This has been so debilitating I skipped two doses and now am uncertain if I should continue the injections. The medicine has kept me alive for almost 10 months now so I will give it that. But for how long?"

6 / 10

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7 Report

Gol...
Taken for 2 to 5 years
April 28, 2018

"I have myelodysplastic syndrome (MDS) Refractory Anemia with Excess Blasts type 2 (RAEB2). I was diagnosed in November 2014 and started treatment in January 2015 with azacitidine for 7 days every 28. After 6 months, this was switched to a 5-day cycle every 28 days. On 30/4/2018, I started my 45th cycle, still with no side effects. My blood test results show some variation each month but not significant enough to warrant any transfusions. It works for me, long may it continue to do so. I am a 74-year-old male and live in the UK."

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17 Report

Car...
April 22, 2021

Vidaza (azacitidine) "Vidaza finished off my dad. (60 yr old). He was active, doing okay, then when he got diagnosed Myelodysplastic Syndrome (MDS) and high risk the dr. immediately started him on 7 days of Vidaza. After three rounds, my dad's liver could not take it anymore. He died of liver failure. Please be careful and talk to your doctor about dif. treatment options."

1 / 10

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9 Report

Anonymous
December 18, 2017

"I've been on Vidaza since March 2017. My bone marrow blast was 19, 20 is full-blown leukemia in the bone marrow. In the month of March, I had 16 platelet transfusions and 10 blood transfusions. I decided against a bone marrow transplant due to my age, diabetes, and breast cancer five years ago. So far, I'm doing well. My platelets have been down and also my Hgb, but not low enough for transfusions. I do have side effects from this drug. Hope this has helped someone. Oh, I had another bone marrow biopsy in May, and the blast was 1.2."

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10 Report

Had...
May 28, 2017

"I've been using Vidaza for two months after my acute myeloid leukemia relapse, not too much, but I was having 0.02 blast shows in minimal residual disease (MRD) examination. Unfortunately, the blasts increased to 1.9, which means the Vidaza does not work well with me at all :/ So my doctor is trying to increase the dose for me, and he gave me a new medication specialty for leukemia patients, and I'm going to try Vidaza and this new medication 'tablet' for three months more, then he will make a bone marrow examination to see if it works this time or not :( Wish me luck, please :)"

1 / 10

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9 Report

ton...
Taken for 1 to 6 months
December 26, 2014

"Due to start second cycle of injections. Still get hot flush (blasting), headaches, extreme fatigue, very sore bones as well as difficulty in sleeping. I was diagnosed with CMML approx 2 yrs ago and now at next stage phase 2. The azacitidine is a 6 month trial and if not positive in results then its a bone marrow transplant. Fingers crossed."

6 / 10

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4 Report

Anonymous
Taken for 6 months to 1 year
April 4, 2013

Vidaza (azacitidine) "Vidaza worked very well, and the only side effect was some minor constipation, cured with a softener and milk of magnesia."

10 / 10

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60 Report

Ido...
May 19, 2017

Vidaza (azacitidine) "I had 9 or 10 cycles of Vidaza. It did nothing for my MDS."

1 / 10

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16 Report

Gra...
Taken for 6 months to 1 year
November 10, 2016

"6th round had severe vomiting on other health issues . Acute Myeloid Leukemia"

8 / 10

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5 Report

Reviews may be edited to correct grammar/spelling or to remove inappropriate language and content. Reviews that appear to be created by parties with a vested interest are not published. This information is not intended to endorse any particular medication. While these reviews may be helpful, they are not a substitute for the expertise, knowledge, and judgement of healthcare professionals.