Constant mycobacterium abscessus treatment

[TonyaH]

I have a question for those who have been treated for m. abscessus. My 16 year old son has been culture positive for m. abscessus for 7 years. He has been treated multiple times with both IV and oral antibiotics. The side affects of these medications have become intolerable.

He is currently on a combination of IVs and orals that are working well for him. He can eat, his mood is better, he just overall feels more like himself. My question for those of you fighting m. abscessus long term is: did you ever get to the point where you would take IVs over orals for treatment? My son doesn't want to go back on his maintenance dose of orals and nebs he had been using. (and obviously, he had an exacerbation, so how effective were they?) I feel like we are throwing in the towel a little bit to just keep him on IVs nonstop because he his fev1 is still very strong (high end of moderate). But he has just felt so awful on all of the other combos we have tried...it's a relief to see him much more comfortable!

 

[MichaelL]

I started growing mycobacterium abscessus in 2008. I've been on aggressive treatment that includes IV meds and several orals for the past three years. I started the IVs because I was having a decrease in FEV1 as well as just not feeling very well. My doctor wants me to have twelve months of negative AFB smears before we return to maintenance meds. I don't plan to be on IVs forever, but my infection has been quite resistant to treatment. My most recent AFB smear was positive, so I will be continuing the IVs for the foreseeable future.

Has your doctor laid out criteria for when your son would switch from the IVs back to oral/inhaled meds? Also, is your CF doctor working with an NTM specialist? If not, I would recommend that he/she should. Although I mainly see my CF care team, they work closely with my NTM doctor. He sets the treatment plan for my abscessus and they consult with him when I've hit bumps in the road.

Good luck with your son's treatment. I completely understand the frustration of long-term IVs.

 

[TonyaH]

Thanks Michael,
Yes, our doctors work closely with NIH in Bethesda...THE guy there is very well known an respected, so I know we are getting good advice. He was the one who told us that after years of on and off IVs, we were never going to eradicate this, and decided a long term oral/neb combination would help subdue the infection. We were to remain on that combo for one year past my son's first clean culture. Well, that started in September and by February he was already in pretty bad shape again..feeing terrible, so we went back to IVs. This current combo of IVs and orals is the first thing in years that has allowed my son to feel normal. So, I'm just preparing myself for tomorrow, if the doctor wants to end IVs and go back to the oral/nebbed maintenance plan I feel like I want to suggest keeping him on the same course we are on. But I don't want to feel like we are overdoing it, keeping him on IVs for a year past his first clear culture, when the chances of us ever getting a clear culture are slim to none. Just wondering if anyone has ever opted for IVs over orals, and requeted it from their doctor.

 

[Hail2Pitt]

Hi TonyaH,

I'm in the same boat - culture positive for Abscessus for several years, and lots of IV, oral, and inhaled antibiotics during that time.

So your son went on IVs just a month ago? I would absolutely push back if the doctor wants to take him off. I'd think they'd want to blast him with many months of IVs before trying the oral/inhaled regimen again. At least, that's what my docs typically do, and one of my doctors is the same doctor at NIH (he is awesome).

What was the oral/inhaled combo that the doctor wanted to do? Just curious to see if it matches my experience. I'm currently on azithromycin and inhaled amikacin, and at the first sign of worsening symptoms, we're going to add either another oral antibiotic or an IV.

Jim

 

[TonyaH]

Hi Jim,
We have tried so many different combos...most recently, (September), Dr. O decided to try the maintenance regimen of one inhaled med (amikacin) and four orals (zyvox, azithromycin, minoycline, and moxifloxacin.) The wreaked havoc on my son..he was miserable. He started in with fevers, nightsweats, increased cough, etc. etc. in January and by February was back in the hospital. They switched his m. abscessus treatment to oral azithromycin, IV amikacin, and IV imipenem...a combo he has been on before, but this time around is much easier on his stomach.

We actually just returned home from clinic and his fev1 has dropped another 11% from where it was when we started IVs three weeks ago, so stopping them today was not even an option. We recently moved out of state and left a center we absolutely loved..the one who developed our relationship with NIH, to a different hospital system that is considered very good, but does not have as much experience with m. abscessus, so I am trying to start a good working relationship with our new team...show respect for their ideas, yet make sure I'm advocating enough and using the experience we've recieved from NIH and UNC. The idea of stopping IVs after three weeks now feels so foreign to me that I was worried when the new team decided it might even be an option. I went in today ready to request we wait, but in the end, I didn't have to. PFTs decided for us.

So what about you?? I always hear that m. abscessus treatment is a year+ of IVs right off the bat, but that was never the case for us. It seems every three to six months he goes on IVs for 2 to 4 months at a time. Did you ever have to go a year straight on IVs? If so, what did you use?

 

[MichaelL]

Tonya -- I'm sorry to hear that your son's FEV1 fell 11%, but if he's feeling better the FEV1 may come up over time. My doctors always emphasize the importance of FEV1 results and how I actually feel. I agree with Jim that you should not be going off IVs so quickly, although that's not really an issue for you yet. I have been on Amikacin -- both inhaled and IV. The IV version is much more effective, but you have to be careful of hearing loss. The IVs caused hearing loss in my upper registers -- this doesn't effect my day-to-day life, but is still scary. It would be a good idea for your son to get a hearing test now as a baseline and then monitor it if he continues on the IV for an extended period. I go in monthly for hearing tests. They've greatly reduced the strength and frequency of treatments to help avoid further damage.

When you talk about "clean culture," are you talking about AFB smears of m. abscessus cultures? I've been told that I will always be culture positive, but we were hoping to get smear negative. I'm beginning to give up hope on this, though.

 

[TonyaH]

Hi Michael,
Yes, I'm talking about negative AFB smears. Sorry for the confusion. We are beginning to give up hope, too which is what concerns me about this maintenance dose of orals that make him so miserable..wondering if he would be better off on low-dose IVs as maintenance.

Andrew has high frequency hearing loss as well. Like you, nothing that affects him day to day, but we do monitor with hearing tests. In fact, his next one is scheduled in two weeks.

May I ask you how much your fev1 has been affected by your m. abscessus, and how your fev1 correlates with how you actually feel?

I read your signature, and Andrew also grow steno and pseudomonas. He also has ABPA with a high IgE, so I'd be interested to know more about your pattern of wellness if you feel comfortable sharing. Thanks!

 

[Jane]

Tonya I don't really have anything to add, but I wanted to let you know I'm thinking of you and Andrew. Have you looked into National Jewish? Our doctors did quite a bit of corresponding with them. Just curious.

 

[MichaelL]

Tonya -- when I first started culturing abscessus, my FEV1 dropped about 10%. My normal FEV1 is now in the 45% to 50% range.

Last year I wasn't doing very well, so they decided to try to target my pseudomonas. They switched my IVs off my normal abscessus med (Cefoxitin) to something else. After two weeks, I had a horrible flare up of the abscessus and my FEV1 dropped to 30%. I've never felt that miserable before. I spent 6 weeks in the hospital, which is when they switched me from inhaled Amikacin back to the IV form as well as restarted my Cefoxitin.

I've been back in my normal range for about three months now and I'm feeling pretty good. My shortness of breath isn't as good as I would like, but I'm hoping to improve that through exercise.

Based on what I've seen on this board as well as the UK CF message board, it sounds like a lot of people go on IVs for about three months at a time. It does seem treatment is very individualized, particularly with regards to what meds are used. My sensitivity testing shows my abscessus resistant to most of the common meds. It sounds like they've found a good combination for your son.

 

[Hail2Pitt]

Hi Tonya,

Sorry for my delayed reply. My shortest stint on IVs was three months, and in hindsight I shouldn't have gotten off so soon. I've also been on them for six months a couple times, and once for almost two years. I unfortunately can't tolerate IV amikacin - we tried that initially, but I had severe neurological side effects and had to get off it very quickly. The inhaled version also unfortunately affects my hearing, but I take it anyway because I don't really have a choice. It works pretty well for me, and I'd rather be thriving with some hearing loss than the alternative. I've also taken cefoxitin, but that doesn't seem to work very well for me. For now, primaxin is my go-to. My last long regimen (20+ months) was oral azithromycin, IV primaxin, and inhaled amikacin. During that time, I also participated in the ARIKACE trial.

For me, I know it's time to go on IVs because my FEV1 will be down (my baseline is around 80, and I'll see it in the low 70s), I'll have increased fatigue, and my sputum volume and color will change. I'll also start to get low-grade fevers periodically.

This is definitely a tough bug, and treating it is as much art as it is science. In June of 2013, I begged my doctors for a drug holiday. I'd been on IVs for almost two years, and needed a break. They agreed, but only if I stayed on azithromycin and inhaled amikacin. They also were going to monitor me closely, and put me back on IVs at the first sign that my health was declining. The expectation was that the holiday would probably only last a couple weeks. Note that at the time I was smear positive. Now, nine months later, I'm doing really well, and I've actually been smear negative (still culture positive) the past six months. They're very pleasantly surprised that I'm hanging in there without needing stronger drugs.

I definitely give God the credit here, as I consider this to be a minor miracle. But, I'm EXTREMELY aggressive with airway clearance. I've always been aggressive, but I stepped it up once I started my drug holiday, and I believe it's made a difference. I do a one-hour session in the morning and another one-hour session (sometimes longer) before bed, and on days when I'm not quite feeling "normal", I'll come home during lunch to squeeze in a third one. My routine is kind of unorthodox, based on trial-and-error and figuring out what seems to work for me. I can expound if you're interested. Also, I work out about five days a week, and I do this right after my morning session. I always start with the elliptical machine for about 30 minutes, and I have a deep breath/huffing/coughing routine I do where I cough my guts out but clear out a lot more mucus. I also huff and cough while I'm lifting weights. I feel exhausted by the end of this, but after a bit of rest, my lungs feel pretty good. Note that I have a workout room in my basement, so I don't have to do all of this coughing in public. I know the azithromycin and amikacin are really helping as well, and antibiotics absolutely have to be part of the equation, but in my opinion, aggressive airway clearance is almost as important.

One other thing - both you and Michael said you were beginning to give up hope, and I pray that you don't. We all want to be culture negative, but I believe we can all find ways to thrive with this disease. I've managed to get married, have twin babies, work full-time, invest in my family and friends, and be involved with my church despite this stupid bug. It knocks me down sometimes, and I've had to go on disability twice, but God gives me the strength to get back up and keep fighting. I pray he does the same for you!

Jim

 

[Diana Blue]

Hi Tonya,

i've just read your post, and it seems we share the same current CF story. We moved from SC to CA last Feb, and upon our first CF visit (Lawson's 16th birthday) at Stanford they informed us that he had myco abscessus and ABPA. The docs at the center in SC had overlooked--i still am in shock. He went from being quite healthy to ivs for 6 months then inhaled amekacin.
The doc at Stanford put hom on cipro, clarithromycin, and minocycline along with neb amekacin. Last month, Lawson complained of achy joints and i knew it was the cipro. They took him off it. I noticed several f you are doing zithro and i see research to support zithro instead of clarithro. Would like to know more. He has been smear negative. We go in this Friday to see about changing meds as i feel Lawson has plateaued on currentregimen. Also, doc wants to try Xolair for abpa.

Blessing and peace to us all.

diana

 

[TonyaH]

Hi Jim- Thank you for your lengthy response and for sharing your faith..I fully agree with all you've said. I did not mean to imply that we are giving up hope in ever controling the m. abscessus....I'm just wondering if it's time to give up on the oral combo that seems to make him feel worse instead of better and stick with more constant IVs. (especially when this current combo of IVs seems to have him feeling much better!) Just spoke with doctor yesterday and we are extending him again through April 16th and then reevaluating. In that time, I also have a trip to UNC planned for him to regroup with our doctor there.

Diana- Yes, it sounds like Lawson's story is much like my son's. He did a four month trial of xolair injections this past summer/fall. We really did not see that it made a difference, but trying xolair again is something else the doctor has suggested if we can't get his pfts to rebound soon. As for the clarithro/azithro...the last time A was on clarithromycin was a couple of years ago. Azithro has been the oral component of his IV therapy for at least a couple of years now. I can't say he did better on one over the other, but I know they watch sensitivities.

 

[Diana Blue]

Hi Jim,

i saw a post here somewhere,perhaps you? Regarding Arikace being available for compassionate use. Our doc at Stanford says he's been trying to get it. Could you please let me know any contact info for it you have?

thank you so much,
diana
lawson's mom

Hi Tonya,

Sorry for my delayed reply. My shortest stint on IVs was three months, and in hindsight I shouldn't have gotten off so soon. I've also been on them for six months a couple times, and once for almost two years. I unfortunately can't tolerate IV amikacin - we tried that initially, but I had severe neurological side effects and had to get off it very quickly. The inhaled version also unfortunately affects my hearing, but I take it anyway because I don't really have a choice. It works pretty well for me, and I'd rather be thriving with some hearing loss than the alternative. I've also taken cefoxitin, but that doesn't seem to work very well for me. For now, primaxin is my go-to. My last long regimen (20+ months) was oral azithromycin, IV primaxin, and inhaled amikacin. During that time, I also participated in the ARIKACE trial.

For me, I know it's time to go on IVs because my FEV1 will be down (my baseline is around 80, and I'll see it in the low 70s), I'll have increased fatigue, and my sputum volume and color will change. I'll also start to get low-grade fevers periodically.

This is definitely a tough bug, and treating it is as much art as it is science. In June of 2013, I begged my doctors for a drug holiday. I'd been on IVs for almost two years, and needed a break. They agreed, but only if I stayed on azithromycin and inhaled amikacin. They also were going to monitor me closely, and put me back on IVs at the first sign that my health was declining. The expectation was that the holiday would probably only last a couple weeks. Note that at the time I was smear positive. Now, nine months later, I'm doing really well, and I've actually been smear negative (still culture positive) the past six months. They're very pleasantly surprised that I'm hanging in there without needing stronger drugs.

I definitely give God the credit here, as I consider this to be a minor miracle. But, I'm EXTREMELY aggressive with airway clearance. I've always been aggressive, but I stepped it up once I started my drug holiday, and I believe it's made a difference. I do a one-hour session in the morning and another one-hour session (sometimes longer) before bed, and on days when I'm not quite feeling "normal", I'll come home during lunch to squeeze in a third one. My routine is kind of unorthodox, based on trial-and-error and figuring out what seems to work for me. I can expound if you're interested. Also, I work out about five days a week, and I do this right after my morning session. I always start with the elliptical machine for about 30 minutes, and I have a deep breath/huffing/coughing routine I do where I cough my guts out but clear out a lot more mucus. I also huff and cough while I'm lifting weights. I feel exhausted by the end of this, but after a bit of rest, my lungs feel pretty good. Note that I have a workout room in my basement, so I don't have to do all of this coughing in public. I know the azithromycin and amikacin are really helping as well, and antibiotics absolutely have to be part of the equation, but in my opinion, aggressive airway clearance is almost as important.

One other thing - both you and Michael said you were beginning to give up hope, and I pray that you don't. We all want to be culture negative, but I believe we can all find ways to thrive with this disease. I've managed to get married, have twin babies, work full-time, invest in my family and friends, and be involved with my church despite this stupid bug. It knocks me down sometimes, and I've had to go on disability twice, but God gives me the strength to get back up and keep fighting. I pray he does the same for you!

Jim

 

[MichaelL]

Jim -- thanks for the follow-up post. That's great that you've been smear negative for six months. I'm not giving up my health, but I am thinking it's time to give up on getting twelve months of negative smears. I've been constantly smear positive for the last six months even with aggressive treatment.

Diana -- sorry to hear about your son. That's frustrating that it went undiagnosed. I've been on oral azithro ever since I was diagnosed with abscessus. They've never used clarithro for me. The drugs do seem very specialized by individual, but Amikacin does seem to be one of the constants.

Tonya -- I'm glad your son's IVs were extended again since they're working so well for him.

 

[Hail2Pitt]

Tonya and Michael - I should have read your posts more closely the first time! Glad we're all still fighting!

Diana - I unfortunately don't know much about the compassionate use. When Arikace was granted orphan status, it was reported that they would start a compassionate use program in the second half of 2013. Here is one of the articles:

http://finance.yahoo.com/news/orphan-status-insmeds-arikace-194325491.html

I asked my doctor at NIH about it several months ago, and he said it wouldn't include folks who participated in the clinical trial. So, I stopped tracking it. I'll be seeing him in a couple weeks, and if you want, I can ask if he knows anything more.

Regarding your son's regimen, I've always taken azithromycin. It seems that most folks I talk to take this instead of clarithromycin, but I don't know why. I know the drugs are very similar. They've never tried cipro on me (though I take it relatively frequently for pseudomonas), as my Abscessus is resistant to it, and I don't know anything about minocycline. I'm actually going to ask my doctor if that one might be an option for me. The other two oral drugs you could ask about are linezolid and clofazimine. With linezolid, there are neurological risks, so you'd definitely want to fully understand those. With clofaz, it's not FDA-approved, but you can get approval to take it. How is your son feeling? Plateauing isn't necessarily bad if he's feeling pretty good. Though I do hope that one day I might be culture negative, my main goal is to maintain status quo with my CT scans and PFTs.

Jim

 

[Diana Blue]

Hi Jim,

thanks so much for ontinuing the conversation. Lawson had been feeling quite well, but with a cough that just wasn't his usual...but now crazy cold last week has left us all a bit worse for a bit. We just got news that he's smear positive again..ugh. Doc put him on levofloxacin and waiting for full susceptibility results before we start back with ivs. Devestated.

have seen some good info regarding colloidal silver and m abscessus. I just ordered Nature's Rite Respiratory Relief- they did studies on it under name of kc 287 and it killed m abscessus in vivo. Worth a good try.

blessings,
diana