Mycobacterium Abscessus — Long IV treatments

[MichaelL]

I’ve been growing mycobacterium abscesses since 2008. I first underwent treatment for it in late 2008 into 2009 because it was having a negative impact on my health. This initial treatment started with some IV antibiotics, but was primarily orals. My health improved somewhat, but I continued oral Cipro and Zithromax after the other meds were stopped. In late 2010, I started having problems again and we decided to start more aggressive treatment. Before the treatment started, I did four weeks of IV antibiotics targeting pseudomonas to confirm that this wasn’t causing my health problems. I didn’t respond to the pseudomonas treatment, so I next started abscesses treatment in March 2011. I was initially told the treatment would last 18 to 24 months. Although my doctors warned me that I would never entirely eliminate the abscesses from my lungs, the goal was to get twelve months of negative AFB smear results.

I have had many ups and downs since starting treatment. Without going into too much detail, I have never been able to get more than three or four months of negative AFB smears. Last August, my health declined at the same time I had started to again grow pseudomonas. In order to treat the pseudo, I temporarily stopped my Cefoxitin IV. After two weeks off of the Cefoxitin, I had a horrible flare up of the abscesses. I had fevers and chills, low energy, no appetite, a big drop in my FEV1, and felt miserable. I ended up in the hospital for six weeks. Initially, they weren’t sure what was wrong, but eventually confirmed it was the abscesses. Since leaving the hospital in October, I have been on IV Cefoxitin and IV Amikacin along with oral Cipro, Zithromax, Linezolid and Clofazimine. My CF team works closely with a doctor who specializes in Nontuberculous Mycobacteria (NTM) infections.

I recently saw my NTM specialist. He is talking about discontinuing one of the oral antibiotics after I’m stable for three months (counting from late December). He said if this year goes well, we can start to phase out the Cefoxitin towards the end of the year. The phase out schedule would last about six months by initially going to five days a week and then three days a week. If I am stable this year, my IV treatment will have lasted 4 1/2 years! If I’m not stable, it could be even longer.

I’m discouraged that I’ve been on IVs for so long and still have a long time to go. At the same time, last year's flare up worries me that the IV drugs are necessary for a decent quality of life.

I’d be interested to hear from others with mycobacterium abscesses who have undergone treatment. How long were you on IVs? How successful was the treatment? Any other experiences or advice? I saw several past threads related to this topic, but they were several years old and no one seemed to be on IVs for long periods of time.

Thanks for your comments.

 

[Deb]

You say that you have an NTM specialist but it never hurts to get a 2nd opinion. I would highly recommend National Jewish in Denver. They have a hotline you can call and they can also set you up with a physician who will work with your CF doctor. This is their specialty.

 

[Hail2Pitt]

Hi MichaelL,

Abscessus is definitely a tough one. I've been struggling with it since at least 2007, when I was diagnosed with both CF and Abscessus at the same time.

Our stories definitely have some similarities. I've been on and off IVs for the last seven years, and have never been culture negative. I also am usually smear positive, and when I become smear negative, I don't stay that way for long. I've been on IVs four separate times - three times for about six months, and then my last stint was 20 months. I've taken IV Cefoxitin, Primaxin, and Amikacin. I've also taken oral Azithromycin, Linezolid, and Moxifloxacin, as well as inhaled Amikacin. In addition, I participated in the Arikace trial. I'm currently on an IV holiday, where I'm only taking Azithromycin and inhaled Amikacin.
My doctors weren't big fans of me going on this holiday, but I begged for it, as I needed a mental break. I'm smear negative right now, but as soon as I go positive, I anticipate the break being over. I was recently approved to take Clofazimine, so as soon as I start to slip a bit, I'll start that and likely start IVs again as well.

After spending a few weeks in the hospital when I was first diagnosed, I've thankfully managed to avoid it since then. I've had to go on disability twice, but for the most part have managed to work full-time as well as live an active life. For me, the most helpful things seem to be aggressive airway clearance as well as exercising almost daily. My workouts consist of pretty intense cardio as well as weight training. In some ways, I think these two things have been more important for me than the antibiotics (though they are of course very necessary), so my biggest piece of advice would be to figure out how to begin working out (if you don't already). Regarding my doctors, National Jewish guided my care for a few years, and then I switched over to NIH and Dr. Olivier (closer geographically). Also, I recently relocated and am going to a new CF clinic, and my pulmonologist is absolutely fantastic and an expert on NTM as well. Both National Jewish and NIH are excellent, though it seems that your doctor knows his stuff given the antibiotics you've been taking. The reality is this is a tough bug, and it seems we have to spend more time on IVs than off.

If you haven't taken Arikace, I'd definitely ask your doctor about it. It's been approved for compassionate use, and though supplies are limited and not everyone is eligible, you may be able to take it and it may help you. I don't think I'm allowed to say much about my experience on the trial, other than I tolerated it well and very much look forward to when it is approved for broader use.

How was your experience with Clofaz? I'm admittedly a little afraid to take it due to the skin discoloration side effect. I've never actually talked to anyone who was on it, so I don't know how extreme the side effect really is. Regardless, I guess that's better than the Amikacin side effects we have to deal with.

Good luck!

 

[MichaelL]

Thanks for the comments!

Deb — I’m certainly familiar with Denver’s reputation from these CF forums. I’m in Canada, so my provincial health plan would not cover seeing a doctor in the US. That said, my NTM specialist is plugged into the work they do at Denver. He’s mentioned to me their experience with certain drugs.


My CF doctor was seeking a second opinion from a colleague in the UK who sees lots of CF patients with abscesses. She put together a package on my specifics and shared it with him. Last I heard, she had not been able to get a response from him.


Hail2Pitt — your situation does sound very similar. I was also diagnosed with CF as an adult in 2001 although the abscesses diagnosis came later. I can certainly understand you’re desire to take a holiday from IVs. I’m impressed that you’ve been able to keep working. I tried to work part time during the first year I was on my IVs, but it just got to be too much.


I hadn’t heard of Arikace before. I just looked at the web site for the clinical trial, which seems to have ended last year. My NTM specialist is listed as the principal investigator for the Toronto site. However, I can’t find whether Canada has given any kind of approval for it.


I do workout five to six days a week. I do treadmill, weights and some stretching. However, I would not describe my treadmill workout as intense. I used to be able to run slowly, but given my decline in the last year I’m only walking briskly.


I haven't found Clofazimine that bad in terms of side effects. The skin discolouration from Clofazimine takes different forms. My doctor said some people’s skin ends up red and blotchy while others look like they have a good sun tan. My experience has been the later — people are often asking where I’ve been on vacation and tell me I look healthy. The downside of the “tan” is that it rubs off onto sheets, towels, clothing, etc. I had to switch to dark bed sheets to hide the staining. My doctor mentioned to me that he has a patient that’s been off Clofazimine for two years and still has her “tan.”


Good luck to you as well. Hopefully you won’t be back on IVs too soon.