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!

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@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

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@allegress...hi there...did you try taking Rifampin at 9:00 at night..Mayo Dr suggested this to sleep through symptoms

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@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.

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@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 🙂

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@tay4rake That's great! It gives me hope.

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@allegres

@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.

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I was just taken off rifampin due to low platelets and petechiae and bleeding. I went off all 3 antibiotics for 2-3 weeks. My ID doctor wants me back on just azithromycin and ethambutol now. I feel like I&m having a return of night sweats and culls and cough so probably will do as she suggests and start back on 2. Has anyone had any experience with this plan of action?

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I had thrombocytopenia from rifampin
It is possible to get a blood test to show drug dependent antibodies through Versiti labs
If present , it is dangerous to use rifampin ever again as drop in platelets can be rapid and severe. The test needs to be done quickly after stopping rifampin to avoid missing the antibodies

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@crepass

I was just taken off rifampin due to low platelets and petechiae and bleeding. I went off all 3 antibiotics for 2-3 weeks. My ID doctor wants me back on just azithromycin and ethambutol now. I feel like I&m having a return of night sweats and culls and cough so probably will do as she suggests and start back on 2. Has anyone had any experience with this plan of action?

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I have not specifically seen your bleeding issues, but I had a very hard time with Rifampin, starting and stopping several times during treatment in 2018/2019 due to nausea and other effects. Now I have learned that the dosage probably should have been adjusted when I was using it daily.
According to my ID doc, there is still a lot of discussion as to whether it really adds enough to the effectiveness of MAC treatment to offset the numerous side effects, If I ever need to go back to antibiotics, I am likely to request an alternative to rifampin.
Sue

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@sueinmn

I have not specifically seen your bleeding issues, but I had a very hard time with Rifampin, starting and stopping several times during treatment in 2018/2019 due to nausea and other effects. Now I have learned that the dosage probably should have been adjusted when I was using it daily.
According to my ID doc, there is still a lot of discussion as to whether it really adds enough to the effectiveness of MAC treatment to offset the numerous side effects, If I ever need to go back to antibiotics, I am likely to request an alternative to rifampin.
Sue

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Thanks sue and dulwich. Night sweats ended in relapse. I started back on 2 antibiotics. Still chasing a fever. Second vacation that has ended in bed. Feeling pretty down. Will send in sputum and do labs tomorrow.

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@dulwich

I had thrombocytopenia from rifampin
It is possible to get a blood test to show drug dependent antibodies through Versiti labs
If present , it is dangerous to use rifampin ever again as drop in platelets can be rapid and severe. The test needs to be done quickly after stopping rifampin to avoid missing the antibodies

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My dr. Did not suggest that at the time but did order at least 15 labs. All came back “normal and a hematologist reviewed all. My platelets popped back to normal after 2 weeks off rifampin. So consensus was to not go back to rifampin. I will discuss that antibody lab when I see my ID doc in late may. She wants another platelet count in 2 weeks to see where they land. After starting back on azithromycin and ethambutol.

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