allegres
@allegres
@allegres
Posts: 13
Joined: Nov 01, 2017
Unusual side effect of Rifampin
I have been taking the big three for about 6 months with very few side effects until two weeks ago. About 5 hours after taking my meds, my mouth broke out in what looked like blood blisters and over the next day or so I noticed unusual bruising on my arms and legs. I called my doctor, but this was not a side effect he had seen before. He ordered blood work which showed an extremely low platelet count. He took me off of Rifampin and within a week everything was back to normal. He would like for me to try it again in 2 or 3 weeks and if I have another bad reaction to it he will look at alternatives. Has anyone else experienced this and if so, what worked for you as a replacement for Rifampin? Needless to say, I am disappointed after having done so well for 6 months. Thanks for any input!
allegres
@allegres
@allegres
Posts: 13
Joined: Nov 01, 2017
Although rare, thrombocytopenia or low platelet count is a known side effect of Rifampin. Pay attention to any bruising or a rash, but don't worry because it is very rare. That is why no one is responding to my question!
america
@america
@america
Posts: 123
Joined: Jun 26, 2018
I had some side effects after six months also on Rafimpin it was a bit different and I stopped it. I know that there is another that can be added to replace it, but I have not tried it. I have problems swallowing pills with one vocal cord and also Sjogrens so I am on inhaled medication only.
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tay4rake
@tay4rake
@tay4rake
Posts: 6
Joined: Jan 24, 2017
Several years ago I had similar reaction with blood blisters in my mouth. At the time it was attributed to Nystatin (oral anitfungal rinse). It was over 5 years ago, but I don't believe I was on Rifampin at the time. I had eliminated that drug several years earlier because I had a drop in white blood cell count. Hope this helps.
Terri Martin., Volunteer Mentor
@windwalker
@windwalker
Posts: 3407
Joined: Nov 18, 2016
@allegress, Hi there! I was curious if you ever went back on the rifampin? How are you feeling these days?
tay4rake
@tay4rake
@tay4rake
Posts: 6
Joined: Jan 24, 2017
@windwalker @allegress, Hi there! I was curious if you ever went back on the rifampin? How are you feeling these days?
No I never went back on rifampin. I have been MAC free for 4 years, but continue to deal with Bronchiectasis and a low immune system. I am very active, I just worry about being coming in contact with sick people and coming down sick myself.
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allegres
@allegres
@allegres
Posts: 13
Joined: Nov 01, 2017
@windwalker @allegress, Hi there! I was curious if you ever went back on the rifampin? How are you feeling these days?
We decided not to try Rifampin again and I will take moxifloxacin instead beginning today. I'm pretty terrified so I would appreciate hearing from anyone who has taken it. Thanks for asking!
Betty
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allegres
@allegres
@allegres
Posts: 13
Joined: Nov 01, 2017
@tay4rake No I never went back on rifampin. I have been MAC free for 4 years, but continue to deal with Bronchiectasis and a low immune system. I am very active, I just worry about being coming in contact with sick people and coming down sick myself.
Did you get rid of the MAC by taking the big three until you a reaction to it?
tay4rake
@tay4rake
@tay4rake
Posts: 6
Joined: Jan 24, 2017
I was taken off the Rifampin back in 2010, don't remember what it was replaced with. My MAC returned end of 2013. Treated again with 3 drug protocol (w/o rifampin) plus inhaled Amikacin. I have been clear since 2014 🙂
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Terri Martin., Volunteer Mentor
@windwalker
@windwalker
Posts: 3407
Joined: Nov 18, 2016
@tay4rake I always like it when a success story gets posted. It gives us all hope. Thank you for staying with this group. It means a lot to us.
Jennifer
@megan123
@megan123
Posts: 150
Joined: Oct 05, 2016
@allegres We decided not to try Rifampin again and I will take moxifloxacin instead beginning today. I'm pretty terrified so I would appreciate hearing from anyone who has taken it. Thanks for asking!
Betty
@allegress…hi there…did you try taking Rifampin at 9:00 at night..Mayo Dr suggested this to sleep through symptoms
allegres
@allegres
@allegres
Posts: 13
Joined: Nov 01, 2017
@Meghan123 My platelet count dropped to a dangerous level and I had blood blisters in mouth as well as unusual bruising and red dots. I had to off of it, but thanks for the suggestion.
allegres
@allegres
@allegres
Posts: 13
Joined: Nov 01, 2017
@tay4rake I was taken off the Rifampin back in 2010, don't remember what it was replaced with. My MAC returned end of 2013. Treated again with 3 drug protocol (w/o rifampin) plus inhaled Amikacin. I have been clear since 2014 🙂
@tay4rake That's great! It gives me hope.
@onana
@onana
@allegres, Hi, I just started the 3 drug medication last Monday, so I appreciated your report and I'm very interested and curious. How did you and your doctor know the bad reaction was caused by the Rifampin and not one of the other drugs?
Olivia in California