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Diagnosed with MDS: What is Paradox Effect with azacitidine (Vidaza)?
After 6 months of treatment with Vidaza it appears that according to my doctor I may be experiencing a Paradox Effect. This effect is shown when the white blood cells do not return to a normal level after treatment with Vidaza. The doctor is skipping a treatment of Vidaza in hopes of isolating whether or not Vidaza is working. Has anyone heard of this Paradox Effect and if Vidaza is no longer effective then what are the alternatives? Thank you for any responses to this.
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My Neutrophil count was only half of the previous months count at 0.17. The doctor has speculated that I may not be responding to Vidaza. I am now being referred for a second opinion to Mayo or Shands in Florida. He thinks that I may have Autoimmune Neutropenia (AIN) and maybe MDS, or possibly just the former AIN.
Hi @jonkerri, I'm tagging a few members who have experience with azacitidine (Vidaza) like @encb27 @tampakaren @miketllc3 @dchavian @timt347 @njjwjj @rjperk633 to see if they have had a similar experience.
Jon, getting a second opinion is a good idea and great for your doctor to suggest it. Have you discontinued Vidaza until things get figured out? How are you feeling?
Yes, I have stopped for two months. I am a little tired, but otherwise well. Thanks for asking. I am seeing the doctor on Monday, Feb. 10th for a follow-up since he started me on a intense course of Prednisone, 80 mg. daily. I will post updates after the appointment.
My mom had opted for no treatment and so far she’s stable… 3 months since diagnosis… the fatigue that got us to today was 5-6 months ago
Still maintaining her life without assistance at her insistence
It does appear that Vidaza is no longer working. However, my doctor started a high dose Prednisone treatment. This boosted my Neutrophil levels to normal levels! No Vidaza until I go to Mayo or Shands (depending on insurance coverage). So I may have MDS and an autoimmune disorder called Autoimmune Neutropenia. Now I am waiting and hoping that the upcoming tests will identify exactly what cancer, disease and disorder I may have. Thanks for the words of encouragement!
I have been approved for a consultation at Mayo on March 28th. Looking forward to getting a second opinion on my diagnosis.
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1 ReactionThere was a recent comment on paradox effect. Can't remember the focus.
I have MDS/AML the latter of which is in remission. I take vidaza with ventecolox ...on 14th cycle...no transfusion since July '24.
Oncologist found a sweet spot on cycle length and volume of vidaza. Lab work dives on platelets only, small decrease on hgb and wbc with increase to normal now.
I'm not certain my situation reflects an answer on the issue on the table. Certainly a second opinion is in vogue.
Good luck 👍
Thank you for your reply. We'll see what the Mayo Clinic proposed for treatment.
Thank you for your responses.
Going to Mayo on March 28th. I am hoping that they can diagnose what I have and provide a treatment for my condition.
Good morning, @jonkerri I wanted to drop by this morning to see if you have any questions about your upcoming trip to Mayo for your visit with a hematology specialist. Being admittedly biased, I can’t speak highly enough of the care I received from my hematology team.
Since you’ll be meeting with a new doctor, I thought I’d toss in a link to one of the discussions in the forum that you might find helpful or interesting at least…
Your tips on how to get off to the best start with a new specialist!
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/
Which campus will you be visiting? Are you all set with lodging?