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User Reviews for Azacitidine to treat Myelodysplastic Syndrome

Also known as: Vidaza, Onureg

Azacitidine has an average rating of 6.0 out of 10 from a total of 15 ratings for the treatment of Myelodysplastic Syndrome. 47% of those users who reviewed Azacitidine reported a positive effect, while 33% reported a negative effect.

Azacitidine Rating Summary

6.0/10 average rating

15 ratings from 14 user reviews.

Compare all 7 medications used in the treatment of Myelodysplastic Syndrome.

10
33%
9
7%
8
7%
7
0%
6
13%
5
0%
4
7%
3
7%
2
0%
1
27%

Reviews for Azacitidine

My father's daughter January 21, 2021

Vidaza (azacitidine): “My dad passed away after 5 days of Vidaza injections. He was doing ok 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. Approx 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 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
Handjeep1 · 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
Rose · Taken for 1 to 2 years January 4, 2020

Vidaza (azacitidine): “Very positive”

10 / 10
Anonymous · Taken for 1 to 6 months September 9, 2012

Vidaza (azacitidine): “My dad had MLS 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 cells 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 had been fewer, a lot fewer. And the doctor considers that Vidaza starts working after 6th cycle so his platelet count will increase. The doctor considered bone marrow transplant but he decided that since he is in total remission and doing well with Vidaza they will wait until 9th cycle and decide then. He has no side effects but a little fatigue.”

10 / 10
Joyneil · Taken for less than 1 month June 27, 2015

Vidaza (azacitidine): “My husband was diagnosed with MDS, no symptoms. He worked out at gym 5 days a week, had just retired, was enjoying life. At Dr's urging, he started on Vidazia. This was supposed to prevent MDS from going into leukemia and buy time to prepare for bone marrow transplant. He took daily treatments for 5 days, was sick with flulike symptoms, then had breathing complications. The following week, he is in excruiating 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 end of life. Death certificate read " multi organ failure ". Vidazia destroyed his internal organs”

1 / 10
john w 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 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
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 sights 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
Tony Ceg April 3, 2016

Vidaza (azacitidine): “I was diagnosed with CMML approx 3years ago and treatment of Azacitidine started 17mths ago... It has stopped me from transformation to AML and I even self inject when oncology dept is closed... So once a month I do the subcutaneous injections. My bloods 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
jcsarge April 15, 2014

Vidaza (azacitidine): “Injection site sore for weeks. If in belly, get it beyond 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 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
Leticia Reyes 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
Goldtooth · Taken for 2 to 5 years April 28, 2018

“I have myelodysplastic syndrome (MDS) Refractory Anaemia with Excess Blasts type 2 (RAEB2). I was diagnosed in November 2014 and was started treatment in January 2015 of Azacitidine for 7 days in every 28. After 6 months this was switched to a 5 day cycle in every 28 days. On 30/4 2018 I start 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.”

Anonymous December 18, 2017

“I've been on Vidaza since March 2017. My bone marrow blast was 19, 20 is full blown Luke in bone marrow. The month of March I had 16 platelet transfusions and 10 blood transfusions. I decided no bone marrow transplant, due to my age and diabetes and breast cancer five years ago. So far I'm doing good. 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.”

Hadeelk 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 is mean the Vidaza not work well with me at all :/ So my Dr trying to increase the dose for me and he give me a new medication specialty for Leukemia patients and I'm going to try Vidaza and this new medication " tablet " for 3 months more , then he will make a bone marrow examination to see if it's work this time or no :( Wish me luck please:)”

1 / 10
tony in oz · 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
Anonymous · Taken for 6 months to 1 year April 4, 2013

Vidaza (azacitidine): “Vidaza worked very well and only side effect was some minor constipation cured with softener and milk of magnesia.”

10 / 10
Idonothaveanickname May 19, 2017

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

1 / 10
Grandpaof7 · Taken for 6 months to 1 year November 10, 2016

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

8 / 10

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.

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