1. < MAC & Bronchiectasis

Penn Medicine/Rifampin

Posted by njlynn @njlynn, 6 days ago

Hello, I am new to this platform while I've had bronchiectasis for 7 years, I only recently tested positive for MAC . It was a bombshell for me; I suppose since I'd gone 7 years without testing positive for it, I had put in out of my mind.
I've been going to Dr. Michael Rey at Penn Medicine Harron Lung Center for treatment since 2022 and just wondered if there are other people getting treated at Penn on this Forum.
I recently started the Big 3 antibiotic regime- about to add rifampin this week -- but saw an interesting post on this site casting doubt on rifampin's efficacy. So I am curious whether most other people taking antibiotics for MAC are skipping it or taking it?
NJLynn

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

njlynn | @njlynn | 3 days ago

That is really encouraging to me, @ace71. thank you! You have a good attitude and those are good ideas and insights on controlling for side effects.

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nancywf | @nancywf | 3 days ago
In reply to @sheila7a "Thank you. How long do you wait to take pills after you have oatmeal? I saw..." + (show)
@sheila7a

Thank you.
How long do you wait to take pills after you have oatmeal?
I saw Pulmonologist today.
He said the azithromycin has the least side effects.
Maybe I could take that after breakfast and the other two in evening after dinner.
Right now I'm waiting because have UTI so another antibiotic for that. Started that tonight.
Nitrofurantoin Mono-MCR.
Sitting here reading prescription information and a rare side effect is very serious lung problems. I guess I'll be calling nurse in the morning.
This stuff can wear on your mind. At least did a lot of walking. Two different appointments lots of distance between them.

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Hi Sheila. I try to take the 1 Azithromycin and 3 Ethambutol just after I finish the oatmeal, but sometimes I get distracted - so it could be up to 30-40 minutes later. I wait 2-3 hours and then take the 2 rifampin. I generally will have something to eat an hour later. This has worked for me. I learned a lot from excellent guidance from the Mayo blogs. Nancy

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barbcoll | @barbcoll | 20 hours ago

Hi - It's my first time posting, however, I do a lot of reading! I had MAC in 2019 and started with the Big 3. I couldn't tolerate the rifampin. After about 1 week, I couldn't focus and I couldn't write anything down. I was still working so I had to stop the drug. I continued on the other 2 antibiotics for 18 months. I haven't tested positive for MAC since then. I do have bronchiectasis and have had 2 exasperations in a year. My pomologists at Penn Medicine is very knowledgeable about the disease, and I trust him. I hope this helps.

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marmee26 | @marmee26 | 1 hour ago

Hi @njlynn
I also go to Penn for treatment and have seen Dr. Rey. I have taken the big three- which you probably know includes Rifampin. I’ve finished 18 months of treatment but developed M. Abscessus so am now on Arikayce (and two other oral antibiotics) and see an ID Doc at Penn instead of Rey but I know they consult with each other. Recent sputum shows no mycobacteria. I return to the ID Doc later this month and will have a CT prior to that visit. I feel well and am cautiously optimistic. Please feel free to reach out directly if I can help you in anyway. Take care.

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2 replies
njlynn | @njlynn | 1 hour ago
In reply to @marmee26 "Hi @njlynn I also go to Penn for treatment and have seen Dr. Rey. I have..." + (show)
@marmee26

Hi @njlynn
I also go to Penn for treatment and have seen Dr. Rey. I have taken the big three- which you probably know includes Rifampin. I’ve finished 18 months of treatment but developed M. Abscessus so am now on Arikayce (and two other oral antibiotics) and see an ID Doc at Penn instead of Rey but I know they consult with each other. Recent sputum shows no mycobacteria. I return to the ID Doc later this month and will have a CT prior to that visit. I feel well and am cautiously optimistic. Please feel free to reach out directly if I can help you in anyway. Take care.

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Marmee, thanks for that helpful comment. I would like to connect - I can't send a private message yet b/c I'm new on the platform but if you can send me one I'd be happy to send my phone number or come up with another way to connect.
NYLynn

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njlynn | @njlynn | 1 hour ago
In reply to @marmee26 "Hi @njlynn I also go to Penn for treatment and have seen Dr. Rey. I have..." + (show)
@marmee26

Hi @njlynn
I also go to Penn for treatment and have seen Dr. Rey. I have taken the big three- which you probably know includes Rifampin. I’ve finished 18 months of treatment but developed M. Abscessus so am now on Arikayce (and two other oral antibiotics) and see an ID Doc at Penn instead of Rey but I know they consult with each other. Recent sputum shows no mycobacteria. I return to the ID Doc later this month and will have a CT prior to that visit. I feel well and am cautiously optimistic. Please feel free to reach out directly if I can help you in anyway. Take care.

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and I'm really glad you are feeling well and had a good sputum test. Will be hoping and wishing for a good scan for you.

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njlynn | @njlynn | 1 hour ago
In reply to @colleenyoung "@njlynn, as a new member, you cannot yet send a private message. We do this to..." + (show)
@colleenyoung

@njlynn, as a new member, you cannot yet send a private message. We do this to keep the community safe from spammers. You can however receive a private message if @pacathy sends you one.

I'd also like to point out the benefit of sharing here in the support group where you all receive support and information from several people and learn from each other. And other people with a similar diagnosis will join in. 🙂

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thanks, Colleen!
When will I be able to send a private message?

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