M abscessus

J

jmiller

New member
I've culturued m abscessus 3 times in the past 4 years or so. I have a repeat embolization next week for hemoptysis and my doc thinks that ifthe bleedingcomes back quickly we may need to consider treating the NTM. I got my senstivities back from the Feb culture that grew it and there are only a handful of sensitive drugs. (Clarithromycin, Kanamycin, Amikacin) and then a handful of intermediate senstivities.
The thought of an extensive time on abx is upsetting. For those of you who have gone down this path -- does it always have to be via IV? I don't have a port and don't really want one - but I imagine that's the only way if you do need IV meds longterm right?
Did any of you treat with any other alternatives? And has anyone with this also wrestled with hemoptysis? If so, did you see improvement in hemoptysis with treatment of the NTM?
We haven't addressed it up to now since the cultures have been intermittent and my PFTs haven't seemed to struggle.... but they will if I continue to bleed every two weeks!
Thanks in advance for the feedback - I appreciate the support of all of you who have walked through this!
 
J

jmiller

New member
I've culturued m abscessus 3 times in the past 4 years or so. I have a repeat embolization next week for hemoptysis and my doc thinks that ifthe bleedingcomes back quickly we may need to consider treating the NTM. I got my senstivities back from the Feb culture that grew it and there are only a handful of sensitive drugs. (Clarithromycin, Kanamycin, Amikacin) and then a handful of intermediate senstivities.
The thought of an extensive time on abx is upsetting. For those of you who have gone down this path -- does it always have to be via IV? I don't have a port and don't really want one - but I imagine that's the only way if you do need IV meds longterm right?
Did any of you treat with any other alternatives? And has anyone with this also wrestled with hemoptysis? If so, did you see improvement in hemoptysis with treatment of the NTM?
We haven't addressed it up to now since the cultures have been intermittent and my PFTs haven't seemed to struggle.... but they will if I continue to bleed every two weeks!
Thanks in advance for the feedback - I appreciate the support of all of you who have walked through this!
 
T

TonyaH

Guest
My son (14 years old) has been culturing mycobacterium abcessus for about two years now. He has been on ivs 9 times now, with his 10th admit happening this Friday. This is his fourth to treat m abcessus specifically. UNCs train of thought is to treat it as agressively as possible. His sensitivities are similar to yours. We don't have many options. and Kanamycin, last I checked, is not even being manufactured any more.. I think this time around we are doing tigicyclene, clarithromycin, and amikacin, all of which he has been on before. While I have heard many stories of people being on ntm treatment for a year or more, UNC treats for eight weeks. Andrew's veins are still really strong, so piccs get us through the full treatment time.

Andrew has had issues with hemoptysis. However, I think his stems more from irritation from nebs. He hasn't had a super bad bleed since he was nine years old.

Good luck! I am not crazy about the heavy duty antibiotics either. However, m abcessus scares me so we don't play around with it.
 
T

TonyaH

Guest
My son (14 years old) has been culturing mycobacterium abcessus for about two years now. He has been on ivs 9 times now, with his 10th admit happening this Friday. This is his fourth to treat m abcessus specifically. UNCs train of thought is to treat it as agressively as possible. His sensitivities are similar to yours. We don't have many options. and Kanamycin, last I checked, is not even being manufactured any more.. I think this time around we are doing tigicyclene, clarithromycin, and amikacin, all of which he has been on before. While I have heard many stories of people being on ntm treatment for a year or more, UNC treats for eight weeks. Andrew's veins are still really strong, so piccs get us through the full treatment time.

Andrew has had issues with hemoptysis. However, I think his stems more from irritation from nebs. He hasn't had a super bad bleed since he was nine years old.

Good luck! I am not crazy about the heavy duty antibiotics either. However, m abcessus scares me so we don't play around with it.
 
B

beleache

New member
Hi j,
I pm'd you back & am curious if you received it or not ??
I was dxd w/ M Abscessus about 4 yrs ago. I totally freaked when I found out & am thankful for this site & the ppl here that helped to put my mind at ease at that time.
My dr. opted not to treat right away as the treatment can be harsh & my kidneys took a hit from IV Tobramycin..
In the meantime, I did some research on places that specialized in the treatment for NTM & come up w/ 2 facilities, one in North Carolina (i think) & one in Colorado.
Some time after the dx the newest CT result (have you had CT done ?) showed a cavity in my lung so the dr. said it was time to treat. I told her I want to go to Denver National Jewish for their expertise & she didn't have a problem w/ this. So Denver called the shots & my Dr. In Manhattan followed through w/ their recommendations.
I was on IV Cefoxitin for 7 mo. w/ port, oral Clarithromycin & inhaled Amikasin ... I am still doing the oral & inhaled after more than 3 yrs & dr said it will always be a part of my therapies.. I was told the bug most often can NOT be killed.
I was going to DNJ every 6 mos. After some time the cavity showed improvement & then closed up ! Ty God !! I had a bad bleed awhile back & the drs in Co. said if it continued they would prob do surgery & possibly remove the affected lobe. My dr here said the drs at DNJ are to quick to do that & I am happy that she isnt so quick to do surgery.
So in answer to your question, other drugs besides IV drugs can be used but Im not sure if at least one has to be IV as that was my case. I do have a port & love it & the main goal is good heath right ??
I hope I've answered your questions & if you have any more please dont hesitate to ask.. If you want to talk I will pm you my phone #.
Take care <3 joni
 
B

beleache

New member
Hi j,
I pm'd you back & am curious if you received it or not ??
I was dxd w/ M Abscessus about 4 yrs ago. I totally freaked when I found out & am thankful for this site & the ppl here that helped to put my mind at ease at that time.
My dr. opted not to treat right away as the treatment can be harsh & my kidneys took a hit from IV Tobramycin..
In the meantime, I did some research on places that specialized in the treatment for NTM & come up w/ 2 facilities, one in North Carolina (i think) & one in Colorado.
Some time after the dx the newest CT result (have you had CT done ?) showed a cavity in my lung so the dr. said it was time to treat. I told her I want to go to Denver National Jewish for their expertise & she didn't have a problem w/ this. So Denver called the shots & my Dr. In Manhattan followed through w/ their recommendations.
I was on IV Cefoxitin for 7 mo. w/ port, oral Clarithromycin & inhaled Amikasin ... I am still doing the oral & inhaled after more than 3 yrs & dr said it will always be a part of my therapies.. I was told the bug most often can NOT be killed.
I was going to DNJ every 6 mos. After some time the cavity showed improvement & then closed up ! Ty God !! I had a bad bleed awhile back & the drs in Co. said if it continued they would prob do surgery & possibly remove the affected lobe. My dr here said the drs at DNJ are to quick to do that & I am happy that she isnt so quick to do surgery.
So in answer to your question, other drugs besides IV drugs can be used but Im not sure if at least one has to be IV as that was my case. I do have a port & love it & the main goal is good heath right ??
I hope I've answered your questions & if you have any more please dont hesitate to ask.. If you want to talk I will pm you my phone #.
Take care <3 joni
 
R

Rebjane

Super Moderator
Our clinic is going to start screening patients for this. I was told it has to be a expectorated sputum sample(not cough swab)...My daughter has yet to cough up a sputum sample into a cup(well maybe one but it was mixed with saliva). Sorry to hijack this thread but do you know if a sample induced with Hypersal would be ok?

I worry about this bug as it seems more prevalent.
 
R

Rebjane

Super Moderator
Our clinic is going to start screening patients for this. I was told it has to be a expectorated sputum sample(not cough swab)...My daughter has yet to cough up a sputum sample into a cup(well maybe one but it was mixed with saliva). Sorry to hijack this thread but do you know if a sample induced with Hypersal would be ok?

I worry about this bug as it seems more prevalent.
 
J

jmiller

New member
Thank you all for your repsponses! Joni I will write back to your PM later tonight -- in the middle of work <img src="i/expressions/face-icon-small-smile.gif" border="0">

I found out that I have actually only cultured this twice - once in 2009 and once in Feb of this year. For those who have treated it, how many times did you culture it before starting? My doc said something about 3 consecutive cultures to prove it's existence...
 
J

jmiller

New member
Thank you all for your repsponses! Joni I will write back to your PM later tonight -- in the middle of work <img src="i/expressions/face-icon-small-smile.gif" border="0">

I found out that I have actually only cultured this twice - once in 2009 and once in Feb of this year. For those who have treated it, how many times did you culture it before starting? My doc said something about 3 consecutive cultures to prove it's existence...
 
S

semnle34

New member
Hi! I was diagnosed with NTB about 2 years ago. I was originally taking Rifampin, Biaxin and Ethambutol at first orally for 12 months. Then I got sick and ended up in the hospital for several weeks followed by 2 additional weeks at home on an IV. I got a port about 4 years ago and believe it was the best decision I ever made. It is so easy accessing my line and so much easier than being stuck a million times by floor nurses or getting PIC lines. After the last hospitalization I cultured the Myco as we suspected. I continued oral antibiotics for several months and was doing well. Back in Feb of this year my FEVs started to decline again and started to have really bad night sweats and severe fatigue. My doctor decided to put me on IV meds of Amikacin and Clarithromycin for a total of 6 weeks. I felt much better about 4 weeks into the treatment. Its been over 2 months now and the damn night sweats are back with a fury. I had to provide a sputum a few weeks ago. Im 100% positive the Myco will be there again and another round of IV meds will be necessary. If you continue to have problems with the NTM I suggest you consider getting a port, it really makes it easier to administer the IV meds necessary to treat it. From the research Ive done the M. Abcessus is extremely difficult to treat and not easily erradicated. It seems to be fairly aggressive and declines in FEV's are typical. There are plenty of us that suffer from this so dont be affraid to share your issues or concerns. I havent had much luck other than the IV meds that alleviate the symptoms for a few months. Its comforting to know there are so many other people out there dealing with this crap too. Its so stressful......Hang in there....keep up the struggle. Excersice also helps out. Cardio will help build up those lung muscles to help fight.
 
S

semnle34

New member
Hi! I was diagnosed with NTB about 2 years ago. I was originally taking Rifampin, Biaxin and Ethambutol at first orally for 12 months. Then I got sick and ended up in the hospital for several weeks followed by 2 additional weeks at home on an IV. I got a port about 4 years ago and believe it was the best decision I ever made. It is so easy accessing my line and so much easier than being stuck a million times by floor nurses or getting PIC lines. After the last hospitalization I cultured the Myco as we suspected. I continued oral antibiotics for several months and was doing well. Back in Feb of this year my FEVs started to decline again and started to have really bad night sweats and severe fatigue. My doctor decided to put me on IV meds of Amikacin and Clarithromycin for a total of 6 weeks. I felt much better about 4 weeks into the treatment. Its been over 2 months now and the damn night sweats are back with a fury. I had to provide a sputum a few weeks ago. Im 100% positive the Myco will be there again and another round of IV meds will be necessary. If you continue to have problems with the NTM I suggest you consider getting a port, it really makes it easier to administer the IV meds necessary to treat it. From the research Ive done the M. Abcessus is extremely difficult to treat and not easily erradicated. It seems to be fairly aggressive and declines in FEV's are typical. There are plenty of us that suffer from this so dont be affraid to share your issues or concerns. I havent had much luck other than the IV meds that alleviate the symptoms for a few months. Its comforting to know there are so many other people out there dealing with this crap too. Its so stressful......Hang in there....keep up the struggle. Excersice also helps out. Cardio will help build up those lung muscles to help fight.
 
M

MichaelL

New member
Hi - I was diagnosed with abscessus in 2008. I got very sick that year and underwent nine-months of treatment primarily by oral antibiotics. (My insurance company wouldn't cover Tygacil, which my strain seems to respond to.) That seemed to do the trick for about two years. My doctors started me on long-term IV therapy in Mach 2011. I started out on IV Amikacin and IV Cefoxitin along with oral meds Cipro and Zythromax.

If you go on Amikacin, make sure you go in for regular hearing tests. I stopped the drug last July because it was damaging my hearing. We got insurance approval for Tygacil, which I started in August. The side effects of that drug were awful -- I ended up in the hospital in November with pancreatitis. They switched me back to the IV Amikacin in December. After more hearing tests showed that my hearing was being damaged further, I finally switched to inhaled Amikacin. To be honest, it doesn't seem to be as effective. I'm still on the IV Cefoxitin, Cipro and Zythromax. They also added Clofazimine early this year. I expect to be on the treatment for another 6 to 9 months.

I have done my treatments with a PICC line. Every four months, I have gone in and they switch the PICC line over a wire. This means they're using the same insertion point and don't have to search for a vein. It's faster and less stressful. I don't know a lot about ports, although I have wondered if I should get one.

My CF doctors work with a doctor at another hospital who specializes in abscessus treatment to decide my medication regimen.

I've been told that the abscessus cannot be eliminated entirely. The goal is to get it under control. There's another patient at in my clinic who went through the full treatment plan and did not have problems with abscessus for 10 years.

In terms of hemoptysis, I have had some episodes in recent months, but I didn't have any leading up to my treatment. My treatment was started because my health was deteriorating. They initially treated my steno (I didn't get better) just to make sure we should start the long abscessus treatment.

I hope this helps. Feel free to send me a message if you have any questions.

Good luck!
 
M

MichaelL

New member
Hi - I was diagnosed with abscessus in 2008. I got very sick that year and underwent nine-months of treatment primarily by oral antibiotics. (My insurance company wouldn't cover Tygacil, which my strain seems to respond to.) That seemed to do the trick for about two years. My doctors started me on long-term IV therapy in Mach 2011. I started out on IV Amikacin and IV Cefoxitin along with oral meds Cipro and Zythromax.

If you go on Amikacin, make sure you go in for regular hearing tests. I stopped the drug last July because it was damaging my hearing. We got insurance approval for Tygacil, which I started in August. The side effects of that drug were awful -- I ended up in the hospital in November with pancreatitis. They switched me back to the IV Amikacin in December. After more hearing tests showed that my hearing was being damaged further, I finally switched to inhaled Amikacin. To be honest, it doesn't seem to be as effective. I'm still on the IV Cefoxitin, Cipro and Zythromax. They also added Clofazimine early this year. I expect to be on the treatment for another 6 to 9 months.

I have done my treatments with a PICC line. Every four months, I have gone in and they switch the PICC line over a wire. This means they're using the same insertion point and don't have to search for a vein. It's faster and less stressful. I don't know a lot about ports, although I have wondered if I should get one.

My CF doctors work with a doctor at another hospital who specializes in abscessus treatment to decide my medication regimen.

I've been told that the abscessus cannot be eliminated entirely. The goal is to get it under control. There's another patient at in my clinic who went through the full treatment plan and did not have problems with abscessus for 10 years.

In terms of hemoptysis, I have had some episodes in recent months, but I didn't have any leading up to my treatment. My treatment was started because my health was deteriorating. They initially treated my steno (I didn't get better) just to make sure we should start the long abscessus treatment.

I hope this helps. Feel free to send me a message if you have any questions.

Good luck!
 
M

mac

New member
My 13 yo cultured M Abscessus about 7 yrs. ago. He has been on a wide variety of IV's and has had some hearing loss on IV amakacin. His last treatment for M Abcessus was 2 yrs. ago and he was on IV's for 12 months with a week or two break for vacation. It was tough but the port made things bearable.
He has not cultured M Abscessus from sputum in 2 yrs. and had a slight amount show up in a bronch (1.5 yrs ago)that was small enough we didn't treat. His PFT's are the highest they have been in 5+ years - his current regimine is inhaled Amakicin MWF and oral Zithromax.
We also go to NJH in Denver for his NTM care.
 
M

mac

New member
My 13 yo cultured M Abscessus about 7 yrs. ago. He has been on a wide variety of IV's and has had some hearing loss on IV amakacin. His last treatment for M Abcessus was 2 yrs. ago and he was on IV's for 12 months with a week or two break for vacation. It was tough but the port made things bearable.
He has not cultured M Abscessus from sputum in 2 yrs. and had a slight amount show up in a bronch (1.5 yrs ago)that was small enough we didn't treat. His PFT's are the highest they have been in 5+ years - his current regimine is inhaled Amakicin MWF and oral Zithromax.
We also go to NJH in Denver for his NTM care.
 
J

jmiller

New member
Thank you for all of these responses -- I had a long talk with my doctor yesterday and it turns out I have only cultured myco 2 times since 2009 (with many negatives between). My doc follows the guidelines of National Jewish as well as the CF Foundation recommendations and he said that they actually advise not to treat unless you can tie adverse effects to the myco (i.e. PFT decline or other complications that can be directly tied to the myco). My PFTs have been stable and he said that even if I culture it again, we would likely hold off on treatment, unless my hemoptysis returns quickly OR my lung function falls off. If I do begin to see a decline in PFTs his first action would be to a normal "clean-out" for my PA. If that doesn't get things back up then it would be more likely that the myco could be causing some adverse effects.

SO all that to say - I am going to sit tight for a bit before jumping into treatment.
 
J

jmiller

New member
Thank you for all of these responses -- I had a long talk with my doctor yesterday and it turns out I have only cultured myco 2 times since 2009 (with many negatives between). My doc follows the guidelines of National Jewish as well as the CF Foundation recommendations and he said that they actually advise not to treat unless you can tie adverse effects to the myco (i.e. PFT decline or other complications that can be directly tied to the myco). My PFTs have been stable and he said that even if I culture it again, we would likely hold off on treatment, unless my hemoptysis returns quickly OR my lung function falls off. If I do begin to see a decline in PFTs his first action would be to a normal "clean-out" for my PA. If that doesn't get things back up then it would be more likely that the myco could be causing some adverse effects.

SO all that to say - I am going to sit tight for a bit before jumping into treatment.
 
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