1. < MAC & Bronchiectasis

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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irene5 Irene Estes | @irene5 | Jun 12, 2020
In reply to @kayskid "I started 5 weeks ago and have nausea on some days. Now, I am upset because..." + (show)
@kayskid

I started 5 weeks ago and have nausea on some days. Now, I am upset because my teeth are discolored and I read that Rifampim can cause it. Afraid to go to dentist due to COVID. I am new and don't know how to post a question

Jump to this post

@kayskid Hi there and welcome! I do not know that about Rifampin. The red/orange urine is enough for me! Can you call your doctor? The pharmacist? Perhaps your doctor can switch you to a different but comparable med. irene5

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1 reply
toni1132 | @toni1132 | Jun 12, 2020
In reply to @kayskid "I started 5 weeks ago and have nausea on some days. Now, I am upset because..." + (show)
@kayskid

I started 5 weeks ago and have nausea on some days. Now, I am upset because my teeth are discolored and I read that Rifampim can cause it. Afraid to go to dentist due to COVID. I am new and don't know how to post a question

Jump to this post

Yes, Rifampin can discolor your teeth, however, I find that it can be lightened by using a good whitening paste. I hope this helps ! Toni

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heathert | @heathert | Jun 12, 2020
In reply to @kayskid "I started 5 weeks ago and have nausea on some days. Now, I am upset because..." + (show)
@kayskid

I started 5 weeks ago and have nausea on some days. Now, I am upset because my teeth are discolored and I read that Rifampim can cause it. Afraid to go to dentist due to COVID. I am new and don't know how to post a question

Jump to this post

@kayskid I feel for you, I agree the whitening toothpastes help, I would usually go to a dental hygenist every few months, she did a great job so It can come off, COVID is such a pain.

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1 reply
kayskid | @kayskid | Jun 13, 2020
In reply to @irene5 "@kayskid Hi there and welcome! I do not know that about Rifampin. The red/orange urine is..." + (show)
@irene5

@kayskid Hi there and welcome! I do not know that about Rifampin. The red/orange urine is enough for me! Can you call your doctor? The pharmacist? Perhaps your doctor can switch you to a different but comparable med. irene5

Jump to this post

I have an appt in 2 weeks. He called me with the culture result and I was floored. Have not seen him yet due to COVID canceling all office visits. I am already discouraged with so much nausea. I was crying this morning. Thanks for responding.

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2 replies
kayskid | @kayskid | Jun 13, 2020
In reply to @heathert "@kayskid I feel for you, I agree the whitening toothpastes help, I would usually go to..." + (show)
@heathert

@kayskid I feel for you, I agree the whitening toothpastes help, I would usually go to a dental hygenist every few months, she did a great job so It can come off, COVID is such a pain.

Jump to this post

I have been using the white strips. As soon as I feel safe I will go to the dentist. thx for responding.

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irene5 Irene Estes | @irene5 | Jun 13, 2020
In reply to @kayskid "I have an appt in 2 weeks. He called me with the culture result and I..." + (show)
@kayskid

I have an appt in 2 weeks. He called me with the culture result and I was floored. Have not seen him yet due to COVID canceling all office visits. I am already discouraged with so much nausea. I was crying this morning. Thanks for responding.

Jump to this post

@kayskid I am so sorry you are going through this. Trust me I have cried many times during this “journey.” It truly seems quite unfair so much of the time. Please feel gently hugged. irene5

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Mentor
Sue, Volunteer Mentor | @sueinmn | Jun 13, 2020
In reply to @kayskid "I have an appt in 2 weeks. He called me with the culture result and I..." + (show)
@kayskid

I have an appt in 2 weeks. He called me with the culture result and I was floored. Have not seen him yet due to COVID canceling all office visits. I am already discouraged with so much nausea. I was crying this morning. Thanks for responding.

Jump to this post

@kayskid I'm sorry you're feeling such nausea. When I was first on the Big3 and feeling awful, I decided the only way to get through it for me would be to take the meds all together just before bedtime. That way I slept through the worst of the nausea. I also ate a bit of rice cake or rice cracker with the meds. My doctor's reply was, better to find a way to take the meds that works than to give up. I also sucked on Gin-gin ginger hard candy, or drank ginger tea - a lot!
I hope you find a way that works for you.
Sue

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1 reply
kayskid | @kayskid | Jun 13, 2020
In reply to @sueinmn "@kayskid I'm sorry you're feeling such nausea. When I was first on the Big3 and feeling..." + (show)
@sueinmn

@kayskid I'm sorry you're feeling such nausea. When I was first on the Big3 and feeling awful, I decided the only way to get through it for me would be to take the meds all together just before bedtime. That way I slept through the worst of the nausea. I also ate a bit of rice cake or rice cracker with the meds. My doctor's reply was, better to find a way to take the meds that works than to give up. I also sucked on Gin-gin ginger hard candy, or drank ginger tea - a lot!
I hope you find a way that works for you.
Sue

Jump to this post

Thanks. Good idea about the ginger. I am going to try crystalized ginger.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 14, 2020
In reply to @kathyhg "Hi, That was a question I had when I started the big 3 as well. I..." + (show)
@kathyhg

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!

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Hi Kathy! How are you doing these days? I just had my annual Mayo visit and the new dr gave me a script to get an Aerobika. Do you feel that using it has made a difference for you in getting stuff up and out of the lungs? I haven't ordered mine yet.

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1 reply
kathyhg | @kathyhg | Jun 14, 2020

Hi! I use the Aerobika after nebulizing. According to the literature that comes with it, it is supposed to really help clear your lungs so doubly good in combination with 7% saline. I don’t know if it’s the nebulizing or Aerobika or both but it seems to control my symptoms more than the 6 months of the big 3 (I’m waiting for results of recent sputum tests so I’ll know soon enough).

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