MAC Treatment: When will I see side effects?

Posted by wal6578 @wal6578, Oct 28, 2019

Started a little over a week ago with the “big three” for my mac lung. So far no side effects at all except the orange urine after rifampin dose. Appetite is great with no changes, no fatigue which I have never had even before started taking.

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Tina Sims | @tinaesims | Oct 29, 2019

I've been on for over a month and so far so good. I'm just waiting.

kathyhg | @kathyhg | Oct 29, 2019

Hi,
That was a question I had when I started the big 3 as well. I developed ototoxicity after about 6 months on the medication. One day I woke up to terrible tinnitus (on testing, I also had some hearing loss). It was likely from the azithromycin but I stopped everything.

That was 2 months ago and I’m still off the medications and continue to be fairly well, using a nebulizer with saline every morning, followed by a number of lung clearing exercises and use of an Aerobika.

Good luck to both of you!

Tina Sims | @tinaesims | Oct 29, 2019

In reply to @tinaesims "I've been on for over a month and so far so good. I'm just waiting." + (show)

I do have some tinnitus but it's not that bad.

derbeltal | @derbeltal | Oct 30, 2019

I had chills for 4 hours yesterday afternoon. Took 2 Tylenols. Are the chills from MAC or the medication?

> .

kathyhg | @kathyhg | Oct 30, 2019

Good question about chills. Are sweats, similar to hot flashes, related to Mac? I had peri menopausal type hot flashes prior to starting on medication last February. They never went away while I was on the big 3 for 6 months and they persist now that I’m off (still positive on last sputum samples).
Anyone have experience with this?
Thanks,

sounder27 | @sounder27 | Oct 30, 2019

In reply to @kathyhg "Good question about chills. Are sweats, similar to hot flashes, related to Mac? I had peri..." + (show)

Kathyhg. Yes. I get night sweats with the Mac and I understand that they are part of the way the bacterial infection manifests. Not everyone experiences them.

rmason | @rmason | Oct 31, 2019

In reply to @derbeltal "I had chills for 4 hours yesterday afternoon. Took 2 Tylenols. Are the chills from MAC..." + (show)

@derbeltal -I had chills when I started rifampin. Went off it for awhile, then started again. Same problem. My doc then took me off it and no issues. Mine was definitely medication related.

derbeltal | @derbeltal | Oct 31, 2019

In reply to @rmason "@derbeltal -I had chills when I started rifampin. Went off it for awhile, then started again...." + (show)

Thanks. That helps as I am still too new to know what to expect.

derbeltal | @derbeltal | Oct 31, 2019

In reply to @kathyhg "Hi, That was a question I had when I started the big 3 as well. I..." + (show)

Thanks. Knowing what others are experiencing really helps.

tamarrillo2 | @tamarrillo2 | Nov 2, 2019

Not everyone has the side effects. 🙂

Tina Sims | @tinaesims | Nov 3, 2019

In reply to @kathyhg "Hi, That was a question I had when I started the big 3 as well. I..." + (show)

Do you have to go off all meds if you have tinnitus?

derbeltal | @derbeltal | Nov 3, 2019

In reply to @rmason "@derbeltal -I had chills when I started rifampin. Went off it for awhile, then started again...." + (show)

I had chills again last night. I believe it is the rifampin. Go to Dr Tuesday so maybe I will find out. They are bad as I have to take something to stop the chills.