Rifampin side effects

Hello, my name is LInda. I am from Tucson, Az.....I just joined today ......My story is under the heading Getting started...I am on the same therapy, but I started the first pill last week. Now on to the second Ethambutol today. Next week I start the last... I take them 3 times a week....So far nothing too alarming but I haven't had them all together yet.....This is scary stuff..... It helps to hear all the information on the site.....I was definitely not prepared for what I heard.....
Trying to stay positive....We are 3 hours earlier here......

Hi Linda. I hope you're doing well with the meds. It's been about two weeks taking my daily Rx cocktail and so far I feel pretty good. Fingers crossed for us both.

Hi! I too live in Tucson/Vail, AZ. I was diagnosed with MAC last January, 2017 and am on all 3 of the meds for 18 months. Azithromycin, Ethambutol and Rifampin. So far all 3 meds are agreeing, the side effects are mild but experiencing less appetite and low energy. But to reply to Teresa, yes, the rifampin makes your urine orange but I never experienced orange sweat. Linda, I'm wondering if MAC is prevalent in Tucson, AZ, my doctor is Dr. Clements. I hope and pray both of you are feeling better!!! -Filis (64 year old female)

HI, this is Linda Knox replying to you.....I am in Tucson all winter....We should meet and say hello .I am just getting ready to try to leave in July to go back to Youngstown Ohio for the summer.....Yo is about an hour from Cleveland.....I was diagnosed this winter also.....I write to this group under lindaknoxaz....Interesting to see another person from Tucson .......About Rifampin .......I have the orange urine but also have an orange tint to my stool......No one mentioned that before so I thought I should tell everyone that it is a possibility as well.....My ID doctor is T. Zangeneh from UA Banner group....Seems to be up on everything......Started me on each drug a week apart. This is my 3rd week on all the drugs 3 days a week. Not having anything too bad to complain about yet......Maybe it's still early......I am also the one who is taking infusions monthly for IgG count that is low.......
Was wondering if anyone from the Cleveland area has a doctor that they like who is treating them in Cleveland???? I would like to have a name in case of an emergency while in YO.......if I actually really leave......It's scary to think about leaving because everything is set here and when I leave for Yo......I will have different people and doc to deal with......Don't really know what that means in the scheme of things.....
Wishing everyone good luck and sending prayers....
lindaknoxaz xoxo.

@lindaaz, Linda, not to worry about the move/change. If/when you have read all the back pages of our Forum .. you will have educated yourself to the point that you will KNOW if you are being misdirected by a doctor .. AND you will KNOW how to advocate for yourself .. AND you will know to come back to our community to check things out! We are not doctors but we sure know how to "sniff" things out and smell trouble! We will be here for you .. just keep coming back! Hugs to all! Katherine

(I THINK I am coming back alive .. one day at a time .. but of course the next 2-28 day cycles of Tobramycin are still ahead!)

Teresa,
My pulmonologist says he has cured 10/10 patients with the 3 med regimine you are on. I also live in Florida.

Hello my name is Rose I was just diagnosed with Mac about 1 month ago. I am 73 and I also have COPD. My dr. who is infectious disease Dr. put me on Clarithromycin 500mg 2 x a day and Rifampin 2 a day but for 7 days a week. Only after two days my stomach is a mess and also am having trouble falling asleep at night since starting these meds. It feels like what they call restless leg syndrome and I never had that before. I take 5mg of Ambien each night, have been for years because of insomnia . My question is most everyone is saying they are taking 3 different drugs not 2 and they only have to take them 3 days a week. Does anyone else have to take them everyday and he said I will be taking them for 2 years.? I can not imagine feeling this bad for years. He said my CT looked good other than the COPD no lesions or nodules so we caught it right away. Is anyone else having trouble with their legs when they go to bed or unable to fall asleep?

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

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.

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.