Fever, Body aches Day 5 - Azithromycin, Ethambutol and Rifabutin

@nberman So sorry to hear you are feeling so ill. These antibiotics are tough, but for most of us, our body does adjust.
For many, it is easier to adjust if the medications are started one at a time, a week or so apart. Perhaps you can call and ask the doctor for permission to back off and do just that?
I do have a question for you - did the pulmonologist or infectious disease doc explain why they are prescribing the drugs daily? For most types of MAC the protocol is to take the drugs three times per week.
Here is a recent YouTube video on the treatment guidelines from National Jewish Health:

I am on the big three for the third time in 11 years. I have always had to take mine daily. And now they have added Clofazimine since Dec. finally got a negative sputum sample. Waiting for sample 2 results.

I have been on the big three for four months now. In the beginning I would get very fatigued and flu like body aches and low fever. It has subsided and is much better now . I do seem to have more joint pain than I use to, but I am also 69 years old and it may just be age related aches and pains.

@sueinmn your question is one I did not know to ask at my appointment, and a good one, as I am also curious. My MAC is non-cavitary. I was diagnosed via several CTs showing tree-in-bud opacities worsening over 3 years and a positive culture via bronchoscopy. I followed up with the ID doctor again today after the fever reached 102.4 last night. I’ve been given the okay to stop the meds for now, wait for the fever to subside, visit the doctor once more, and try again one at a time. When I see the doctor I will ask why I am taking these daily rather than 3 times/week because he didn’t explain that to me. I do remember him saying we will try once a day and if we need to go to 3 days a week, we will. Thank you for your reply and link to information.

@nberman
I believe you’re having a not very common reaction to the Rifabutin. I was on 250 mg of azithromycin and 800 mg of ethambutal daily for four months and then my doctor started the Rifabutin which I could only tolerate for 13 days as the very high fever and aches and feeling the worse I’ve ever felt in my life was intolerable. After a trip to urgent care and then the ER, I stopped the Rifabutin and will never take it again. Other members of this thread have had similar reactions. (I have screenshots of their experiences that I’m sure you could find on this site but I’d be glad to send them to you if desired).

Take care

i was given that same regimen in 2002 and I ended up 5 days later in the hospital in Washington DC with pancytopenia – it was a direct result of the rifabutin. All medications were stopped for two weeks and then everything was resumed except for the rifabutin and that was replaced with Rifampin. I did this regimen for the next 18 months and I did fine and was eventually taken off all medications. 15 years later I developed bronchiectasis, but I am being treated for it with Brinsupri 10 mg and I'm doing fine.

@lucie0948 yes I’d love to see the screenshots, if it’s not too much to ask? And I think you are correct. I’ve never been so ill without actually having the flu. I’m off the rifabutin and slowly feeling better. The fever is gone, the body aches are getting better. Now I’m just fighting fatigue. Thank you for confirming my thoughts!

Here’s the portion of the ones that were 100% relative to what I was experiencing. Sadly, my respected pulmonologist was clueless about this possible reaction and told me before I started that the ONLY side effect might be my urine etc may be reddish in color.

Been on azithromycin, rifampin, and ethambutol for 6 weeks. Fatigue and body aches(but no fever as of yet) along with joint soreness/stiffness are a considerable side effect for me. Pulmonologist said will take off rifampin if I can't tolerate anymore. May take off all 3 and reintroduce, as another option to try and deal with side effects. Going to give a little more time before I give up on a med. But, its a catch 22, as I need to get rid of the MAC...

I did just fine until the rifabutin was introduced. Within hours of taking it I felt like I had the worst flu of my life (terrible aches and pains), a fever of 102 (my normal is 97.5) and my eyes became bloodshot. It was awful. I hung in there for 11 months ( and I double-checked my journal - yes, 11). In my journal at 9 months I wrote, “can I make it for one more month?” At the end of October, my pulmonologist said was ok to quit. Thank God. I continued the azithromycin and the ethambutol.