Mycobacteria (NTM) Treatment

[bloggymom]

I went to clinic yesterday and explained all of my symptoms. They also took another culture. It looks like my NTM (mycobacteria) may need to be treated. I am having a CT scan next month after I get rid of the creep and crude that I have now.

Any one here been treated for NTM??? I am curious what drugs they used and the side effects (were they tolerable?)?? Did you do more oral meds or more IV meds?? How long were you treated..... constant, 6 months, 1 year??

I am just kinda curious what to expect if my CT scan comes back not looking good next month. My nurse already talked to me about possibly getting a port.

 

[beleache]

Hey Carrie, I have Mycobacterium Abcessus. The Drs. didn't treat it right away as the treatment can be harsh. Each patient is treat differently as we know ppl w/ CF present so differently. You are very blessed to be in Co. I live in N.Y. & go to Denver National Jewish for their expertise. I was getting CT scans every 6 mod. but after I showed improvement they made it once a year , ty God ! I was put on IV Cefoxitin of 7 mod. straight (port is a blessing) at the same time I was also put on oral Biaxin & inhaled Amikacin. I am still on the oral abx & inhaled abx for well over 3 yrs now. Please let me know how it goes & if you want to talk PM me. xo joni

 

[Jane]

My boys were treated first with clofazamine, amikacin and linezolid. After some synergy studies, they were on imipenem IV, rifabutin and bactrim for six months. That combo did the trick!

 

[TonyaH]

I went back through Andrew's binder...since Fall of 2010 he has cultured mycobacterium abcessus and has been treated with every positive culture. We average about one one negative culture between starting rounds of treatment again. His last picc came out on July 13th and the hospital just called Friday to tell me that his culture from that day grew out abcessus again. (It takes an unbelievably long time for this stuff to grow out..then sensitivity results take even longer!

Have you had a positive AFB smear? If I remember correctly, you have grown both abcessus and MAC in the past...I think doctors are more willing to take a 'wait and see' approach with MAC than they are with abcessus.

As for Andrew's treatments, we have ruled out ceftaz and cefoxitin due to allergic responses.
In Fall of 2010 he was on IV tigicyclene (big nausea inducer..ask for zofran!), IV amikacin, and oral clarithromycin for 6 weeks
In Summer of 2011 he was on IV meropenem, nebbed amikacin, oral azithromycin, and oral linezolid (watch dietary restriction carefully on this med!) for 6 weeks.
In Summer of 2012 he was on IV tigecycline, IV amikacin, and oral clarithromycin for 8 weeks, and remains on the clarithromycin for one year past first clean culture, which we have yet to see.

I don't know what we are going to do this time. We go back to clinic on the 19th for another culture and possibly another bronchoscopy. I may request another CT scan, as it has been two years since he has had one, and that time there was already 'tree and bud' growth on scan. I am happy to update you after the 19th if you would like...just message me.

I know many centers use a standard one year of treatment for NTMs, and I think we may be close to trying that approach. Being that you are so close to National Jewish..(and that is where you are seen for your NTM, correct?), they may go ahead and try a one year treatment. I agree with Joni, you are lucky to be so close to one of the top two NTM research centers in the country!

Good luck, Carrie!

 

[bloggymom]

The only diagnosis I have is non tuberculosis mycobacteria. No mention of ABF or Abcessus. Sorry. Those may be part of the diagnosis but I have never heard them from my doctor.

I have cultured NTM for about 2 years now. I have had some damage to the lungs already.

I feel very privileged to have National Jewish team of CF docs and infection doctors working on my case. Helps me relax a little.

I looked up the drugs you mentioned.... I think most of them are okay. I have quite an extensive list of "allergic to drugs" already.

On top of the NTM, I also culture MSS staph and some other new bug (can't remember its name).

I feel very privileged to be at National Jewish.