Unusual side effect of Rifampin

Posted by allegres @allegres, Sep 14, 2018

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!

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

onana | @onana | Sep 15, 2018

@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

allegres | @allegres | Sep 15, 2018

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 | Sep 17, 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.

tay4rake | @tay4rake | Sep 17, 2018

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 | Oct 9, 2018

@allegress, Hi there! I was curious if you ever went back on the rifampin? How are you feeling these days?

tay4rake | @tay4rake | Oct 9, 2018

In reply to @windwalker "@allegress, Hi there! I was curious if you ever went back on the rifampin? How are..." + (show)

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.

allegres | @allegres | Oct 10, 2018

In reply to @windwalker "@allegress, Hi there! I was curious if you ever went back on the rifampin? How are..." + (show)

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

allegres | @allegres | Oct 10, 2018

In reply to @tay4rake "No I never went back on rifampin. I have been MAC free for 4 years, but..." + (show)

Did you get rid of the MAC by taking the big three until you a reaction to it?

tay4rake | @tay4rake | Oct 10, 2018

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 🙂