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Rifampin side effects

Posted by Teresa @tfritschy, May 14, 2017

Hello. My name is Teresa and I’ve just joined this group. I was diagnosed with Bronchiectasis and MAC in September 2016 after a CT scan showed cavitating lesions and the sputum sample identified MAI/MAC. I’m seeing a Pulmonologist here in Orlando, Fl who has experience dealing with and treating patients with both conditions. The original plan was to try to control symptoms with nebulizer meds as I had so many concerns regarding the antibiotic regiment. A recent scan showed that the lesion is getting larger and my symptoms are getting worse, so I have started a course of Rifampin, Azithromycin and Ethambutol today. After just one Rifampin dose my urine is quite orange, which my doctor had given me a heads up about. I understand that this effect is harmless, but I'm wondering if it will also cause orange sweat, which would be quite an embarrassing problem to have here in the Florida heat. Has anyone else had experience with this side effect?

I’m in my 50’s and have dealt with a lot of medical issues over the years, including a breast cancer diagnosis 5 yrs ago, but to be honest this chronic condition and its treatment scares me more than anything else I’ve faced. I was glad to find this group and hope to make some connections and find/give support to others going through the same thing.

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Sue, Volunteer Mentor | @sueinmn | Aug 3, 2023
In reply to @rosnat "This dr, did not give me the nebulize 7% Sodium Chloride and Levalbuterol or the Amikacin...." + (show)
@rosnat

This dr, did not give me the nebulize 7% Sodium Chloride and Levalbuterol or the Amikacin. But when I called to ask them if he could change the meds due to the problems I am having . I can not make it to work this way, the nurse said if I was to stop or try to take them less often, I would develop a resistance. I don't know why that is right when other do take them 3 times a week. The restless leg thing only started after I started on these meds. someone was nice enough to tell me to check my Iron and Ferritin levels. I started back up on my Cramp defense and some potassium and the restless thing stopped but now I have pains in my legs and over my kidneys, so I need better answers to function. Hope this dr. comes through on this next visit. Thanks so much for your input. Hope all goes well with your visit and you are able to stop the meds.
Rose

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I don't know your specific strain of Mycobacteria, but for most types, 3 times per week is the accepted protocol. I think @dorma is right. It may be time to find a pulmonologist or ID doc with more experience in treating NTM.
Sue

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msk | @msk | Aug 3, 2023
In reply to @rosnat "Thank you so much for that information. You really did fight it I give you a..." + (show)
@rosnat

Thank you so much for that information. You really did fight it I give you a lot of credit for that and everything else you have been through. Thanks so much for taking the time to let me know.
Right after I posted that my brother who I have been helping fight his bladder cancer at Shands hospital had an accident with his scooter and before we even could find him they did surgery and he didn't make it, so I have been working on all his stuff now plus I don't have him here anymore for advice. He was awesome and my best friend. I don't have any nodules or bronchiectasis, so they say. But my infectious disease dr. says I have to take these for 2 years every day. They are killing me so if he doesn't do something different, I am going to try to go to Mayo in Jax. I have to find out if they accept my insurance first. It just seems to me that others with much more damage are only taking them 3 times a week and as you say are able to stop after one year not two. I have an appointment on Tuesday coming up so I will see what he says. His nurse told me if I dont take them everyday I will build a resistance to them. That doesnt sound right either. So heres hoping I get better answers soon, but Thanks again for your help.
Rose

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I am do sorry to hear about your brother. May he rest in peace.
Seeing others response to you. I would also recommend another opinion. I am on 3 days a week. If you have cavities in your lung i was told you would need everyday meds.
Also the time frame for how long to take meds depends in when you start negative sputum cultures. I started meds in feb of 22 and my first negative sputum was end of September if 22. We then count 12 months to end the meds. So far all my sputum cultures have been negative. So i finish at the end of September. You don’t know how i am counting my days. The only good thing about the meds is that the clofazimine has given me a beautiful color. I usually tan bec i am cuban but the color i have now is deeper than i usually get😎
Hope you can get that second opinion keep ys updated. Miriam

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dlynn1210 | @dlynn1210 | Aug 3, 2023

As most of us diagnosed with MAC I was put in the 3 drugs. I was never told that one can affect my sight and another my hearing. We see our eye doctor regularly and when he asked if on any new drugs I gave the magical 3 - latest eye exam I’m down to 30/20 which is still good but my hearing has taken a serious hit due to the Azithromycin. I wish someone had told me I should get a baseline hearing test ‘before’ taking it - too late now.

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ncgirl | @ncgirl | Aug 3, 2023

Hi - yep, orange urine is par for the course. I didn’t have any orange sweat or tears… my cultures were negative after 18 mos so hang in there!

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