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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?
Replies to "Hello my name is Rose I was just diagnosed with Mac about 1 month ago. I..."
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.
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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