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Is anyone on Rifubutin?

Posted by cpitts @cpitts, 3 days ago

Hello
Diagnosed last year and started triple therapy in Jan with the usual Azithromycin, Rifampin and Ethambutol. Just saw an Infectious disease doc who looked a bit more closely and said the Rifampin wouldn't work on a secondary bacteria that starts with a P. He gave me so much info my brain overloaded. I've called back to get the name. But he wants me to start on this Rifubutin instead. Thank for any help. This is such a wonderful group!!

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Mentor
Sue, Volunteer Mentor | @sueinmn | 3 days ago

@cpitts Hello, it's really hard when the doctor starts using new or unfamiliar terms during antibiotic appointment or phone call, isn't it?

Is it possible the other infection referred to was Pseudomonas (Aeuringosa)? This sometimes occurs by itself or in combination with MAC.

If that's it, you need more information because rifabutin is not usually used to treat it. On the other hand rifampin is sometimes used in combination with yet another antibiotic to treat Pseudomonas. The problem is that Pseudomonas is resistant to many antibiotics, so sensitivity testing is critical before jumping to other neds.

One thing I often do when trying to get a handle on a new condition it to use an e-visit or email to communicate with the doc. That way I have all the information in front of me so I can study, research and ask questions.

How are you tolerating the medication so far? Are your symptoms improving? Have they done followup sputum cultures yet to see if the bacteria is decreasing?

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2 replies
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cpitts | @cpitts | 3 days ago
In reply to @sueinmn "@cpitts Hello, it's really hard when the doctor starts using new or unfamiliar terms during antibiotic..." + (show)
Profile picture for Sue, Volunteer Mentor @sueinmn

@cpitts Hello, it's really hard when the doctor starts using new or unfamiliar terms during antibiotic appointment or phone call, isn't it?

Is it possible the other infection referred to was Pseudomonas (Aeuringosa)? This sometimes occurs by itself or in combination with MAC.

If that's it, you need more information because rifabutin is not usually used to treat it. On the other hand rifampin is sometimes used in combination with yet another antibiotic to treat Pseudomonas. The problem is that Pseudomonas is resistant to many antibiotics, so sensitivity testing is critical before jumping to other neds.

One thing I often do when trying to get a handle on a new condition it to use an e-visit or email to communicate with the doc. That way I have all the information in front of me so I can study, research and ask questions.

How are you tolerating the medication so far? Are your symptoms improving? Have they done followup sputum cultures yet to see if the bacteria is decreasing?

Jump to this post

Thank you Sue for always being so helpful. It was not pseudomonas because I have heard of that. I will find out.
I am adjusting.. Some days I am fine-others not so much but I try to get busy doing other things.
I am one of the ones who find it hard to have any sputum --I am scheduled for another CT in Jan and then another bronchoscope sometime next year. I have GERD as well and that is something that I am trying to get a handle on.

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cahcb4769 | @cahcb4769 | 2 days ago

Hi, I’ve just recently had to go off ethambutol, horrible side effects, and 4 years ago I had to off Rifampin after 5 weeks - landed in hospital. I’ve never done well with antibiotics. So now I use Azithromycin and an inhaled antibiotic. It’s all very depressing, keep your head up.

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cpitts | @cpitts | 2 days ago
In reply to @sueinmn "@cpitts Hello, it's really hard when the doctor starts using new or unfamiliar terms during antibiotic..." + (show)
Profile picture for Sue, Volunteer Mentor @sueinmn

@cpitts Hello, it's really hard when the doctor starts using new or unfamiliar terms during antibiotic appointment or phone call, isn't it?

Is it possible the other infection referred to was Pseudomonas (Aeuringosa)? This sometimes occurs by itself or in combination with MAC.

If that's it, you need more information because rifabutin is not usually used to treat it. On the other hand rifampin is sometimes used in combination with yet another antibiotic to treat Pseudomonas. The problem is that Pseudomonas is resistant to many antibiotics, so sensitivity testing is critical before jumping to other neds.

One thing I often do when trying to get a handle on a new condition it to use an e-visit or email to communicate with the doc. That way I have all the information in front of me so I can study, research and ask questions.

How are you tolerating the medication so far? Are your symptoms improving? Have they done followup sputum cultures yet to see if the bacteria is decreasing?

Jump to this post

Hi Sue
I found out the 2 bacteria I have are
mycobacterium intracelellulare
mycobacterium paraffinicum

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1 reply
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Mentor
Sue, Volunteer Mentor | @sueinmn | 2 days ago
In reply to @cpitts "Hi Sue I found out the 2 bacteria I have are mycobacterium intracelellulare mycobacterium paraffinicum" + (show)
Profile picture for cpitts @cpitts

Hi Sue
I found out the 2 bacteria I have are
mycobacterium intracelellulare
mycobacterium paraffinicum

Jump to this post

Okay, that's a new one to me so Ilookedit up. It doesusuallyrespondtorifabutin (a relative of rifampin), but sometimes not to azithromycin so yet another drug may be added.

Do you know if they tested to see exactly which drugs it is sensitive to?

I'm glad you got a sharp ID doc! Color yourself fortunate.

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1 reply
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westcottkm3040 | @westcottkm3040 | 1 day ago

I was. But went off after a week. Bugged my skin and made me feel so terrible I had no quality of life.

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cpitts | @cpitts | 1 day ago
In reply to @sueinmn "Okay, that's a new one to me so Ilookedit up. It doesusuallyrespondtorifabutin (a relative of rifampin),..." + (show)
Profile picture for Sue, Volunteer Mentor @sueinmn

Okay, that's a new one to me so Ilookedit up. It doesusuallyrespondtorifabutin (a relative of rifampin), but sometimes not to azithromycin so yet another drug may be added.

Do you know if they tested to see exactly which drugs it is sensitive to?

I'm glad you got a sharp ID doc! Color yourself fortunate.

Jump to this post

Yes..it does respond to Azithromycin so I guess I will try it. Thanks for the tips !

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robot | @robot | 20 hours ago

In 2002 I was given rifabutin with ethambutol and biaxin for MAC Dx. Within a few days I was in hospital with pancytopenia. Removal of rifabutin returned me to normal blood levels & it was replaced with rifampin. I did well on this regimen for 18 months until a bronchoscopy verified I was cleared of MAC

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