1. < MAC & Bronchiectasis

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.

REPLY

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

rosnat | @rosnat | Jul 29, 2023
In reply to @tconz "Rose, I started the Big 3 (Azithromycin, Ethambutol and Rifampin) EVERYDAY in January 2023 and have..." + (show)
@tconz

Rose,
I started the Big 3 (Azithromycin, Ethambutol and Rifampin) EVERYDAY in January 2023 and have had no side effects yet. I continue to get my eyes and hearing checked every 2-3 months. I went to NJH in May and they added inhaled Amikacin 3 days a week to the mix because I have a cavity. I will return for a follow-up in November. I am hoping they will cut the meds back to 3 days a week but not sure. My sputum samples have been Negative since February which I am keeping my fingers crossed so I can make it for 1 year and then maybe get off the meds.
I also nebulize 7% Sodium Chloride and Levalbuterol twice daily while using the vest. You mentioned the restless leg syndrome and I am experiencing that as well. I wasn't sure if it was my sciatica nerve or not.
I wish you the best of luck and just know we are all in this together.

Jump to this post

Thank you so much for the info!

REPLY
1 reply
tconz | @tconz | Jul 30, 2023
In reply to @rstel7272 "I sure pray your cavity goes away with the medicine. I was on Arikayce 7 days..." + (show)
@rstel7272

I sure pray your cavity goes away with the medicine. I was on Arikayce 7 days a week and could not tolerate it at all, stopped it at 18 weeks. Now, MWF is a option.

Jump to this post

I am inhaling Amikacin 3x per week because the Doctor said it was more tolerable and less side effects than Arikayce. You may want to ask about it if you can't tolerate the Arikayce. Somehow they are a little different.

REPLY
1 reply
dulwich | @dulwich | Jul 30, 2023
In reply to @tconz "Rose, I started the Big 3 (Azithromycin, Ethambutol and Rifampin) EVERYDAY in January 2023 and have..." + (show)
@tconz

Rose,
I started the Big 3 (Azithromycin, Ethambutol and Rifampin) EVERYDAY in January 2023 and have had no side effects yet. I continue to get my eyes and hearing checked every 2-3 months. I went to NJH in May and they added inhaled Amikacin 3 days a week to the mix because I have a cavity. I will return for a follow-up in November. I am hoping they will cut the meds back to 3 days a week but not sure. My sputum samples have been Negative since February which I am keeping my fingers crossed so I can make it for 1 year and then maybe get off the meds.
I also nebulize 7% Sodium Chloride and Levalbuterol twice daily while using the vest. You mentioned the restless leg syndrome and I am experiencing that as well. I wasn't sure if it was my sciatica nerve or not.
I wish you the best of luck and just know we are all in this together.

Jump to this post

For those with restless legs please consider checking iron and ferritin levels. Mine went away once my ferritin normalized.

REPLY
1 reply
Rick | @rstel7272 | Jul 30, 2023
In reply to @tconz "I am inhaling Amikacin 3x per week because the Doctor said it was more tolerable and..." + (show)
@tconz

I am inhaling Amikacin 3x per week because the Doctor said it was more tolerable and less side effects than Arikayce. You may want to ask about it if you can't tolerate the Arikayce. Somehow they are a little different.

Jump to this post

Amikacin IV put me in the ER, Dr's thought it might be a stroke but I knew it was a reaction to the MWF IV. This started in week 5. Dr reduced the dosage after this and I was able to complete the 12 weeks even with the extreme dizziness. Most can tolerate it, I can't. NJH wants me to start it again before lung surgery, I will not.

REPLY
1 reply
tconz | @tconz | Jul 30, 2023
In reply to @rstel7272 "Amikacin IV put me in the ER, Dr's thought it might be a stroke but I..." + (show)
@rstel7272

Amikacin IV put me in the ER, Dr's thought it might be a stroke but I knew it was a reaction to the MWF IV. This started in week 5. Dr reduced the dosage after this and I was able to complete the 12 weeks even with the extreme dizziness. Most can tolerate it, I can't. NJH wants me to start it again before lung surgery, I will not.

Jump to this post

I am so sorry you have had such a difficult time with the Amikacin IV. All the medications are scary and it is unfortunate for us with this disease that we feel we have to comply and follow the doctors orders. I also go to NJH and was just there in May but as I mentioned before the doctors only wanted me to do the inhaled Amikacin. If this does not help then I may have to do the IV but I am really hoping not.
I really wish you lots of luck.

REPLY
lauraadam2425 | @lauraadam2425 | Jul 31, 2023

When I started the big 3 a year ago I was told that your urine, sweat and tears could turn orange. I have only experienced orange urine, but the others are possible. I also live in Florida and was lucky so far about the sweat. I am so sorry to hear about your problem especially in the very hot summer we are experiencing this year.

REPLY
rosnat | @rosnat | Aug 2, 2023
In reply to @msk "I am on the 3 antibiotics ethambutol, Azithromycin and now taking clofazimine. Originally i was on..." + (show)
@msk

I am on the 3 antibiotics ethambutol, Azithromycin and now taking clofazimine. Originally i was on rifampin. 3 times a week.
The rifampin after about 9 months started causing joint pain in my legs snd body while sleeping. The pain was so bad it would wake me up and I would feel like fainting. Weird.
I went to national Jewish health in denver snd they found it was drug induced lupus. They stopped it and replaced it with the clofazimine. Pain has gone away. I also have fatigue and bad stomach issues with all the meds. Now i have diarrhea they day after i take drugs. All this meds are strong and hard on your body. I have been negative mac since last September. I cannot wait to get off of them in 2 months.
My sputum is negative now but my ct of lung still shows nodules. I have nodular bronchiectasis and that doesn’t go away. Will be getting checked all the time for that. I had neck cancer so nodules in my lung need to be checked that they are not cancerous.
Its a long treatment and for me the side effects are not easy but i fought it.
Now i pray that the air clearance with aerobica and saline will keep the mac away.
If it comes back which i was told it could. Not good to hear that. I don’t know if i will do meds again.
Hope you feel better and get some result soon.
Miriam

Jump to this post

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

REPLY
2 replies
rosnat | @rosnat | Aug 2, 2023
In reply to @dulwich "For those with restless legs please consider checking iron and ferritin levels. Mine went away once..." + (show)
@dulwich

For those with restless legs please consider checking iron and ferritin levels. Mine went away once my ferritin normalized.

Jump to this post

Thank you I will do that, I hope that's it because these legs are not giving me a break, they have started to hurt now, and I have never had this before. I am taking Cramp defense for the spasms and that has helped completely. I recommend it highly it stopped them right away.

REPLY
rosnat | @rosnat | Aug 2, 2023
In reply to @rosnat "Thank you so much for the info!" + (show)
@rosnat

Thank you so much for the info!

Jump to this post

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

REPLY
1 reply
dorma | @dorma | 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

Jump to this post

Just my opinion...but sounds like you do need a different doctor!

REPLY
View MoreView Less
Please sign in or register to post a reply.