clarithromycin for m abcessus

[TonyaH]

Andrew just finished up another 8 weeks of ivs for m abcessus and had his line pulled yesterday! Hurray! This time around they want to keep him on oral clarithromycin fora year after his first negative culture. I've heard of continuing antibiotics for a year past the first clean culture, but I've also heard that m abcessus needs triple antibiotic treatment to be affective. I was always under the impression that meant some doctors treated with all three antibiotics for a full year after a clean culture. Doesn't treating with just the clarithro subject patients to resistance? I'm just wondering if we would be better off with nothing right now, as clarithro is one of the few antibiotics he is not resistant to right now. Yesterday was kind of a hectic clinic day and by the time I took a second to think of the question, our doctor was gone. I'll have to ask next Tuesday when I call for culture results.
What does your clinic do?

 

[beleache]

Hi Tonya,
I also have m abcessus .. I was treated at first w/ IV Cefoxitin (for 7 mos straight) along w/ oral Clarithromycin & inhaled Amikasin.. I am still on the Clarithromycin & Amikasin w/o any stops for over 3 yrs now..
I have heard that drs. dont want you to do mono therapy so that you dont become resistant to that drug. Besides my reg. CF center @ Beth Israel in Manhattan I also go to Denver National Jewish Health in Colorado for their expertise ..
If you have any more questions pm me ..
Take care xo joni

 

[jessconn]

Hi Tonya,

I have also heard that you need to treat the m. abscessus with at least 2-3 anti's at a time to keep from resistance. I would definately ask about adding inhaled Amikacin with the oral clarithromycin. My daughter, Jess, has never been on less than 3 anti's at a time, but we have not been able to get a negative culture yet.

Joni,
Were you able to eradicate the m. abscessus? Do you now have negative cultures or just continuing to treat? My daughter is 15 and has been culturing m. abscessus for about 2 years now. We have been unable to get a negative culture, even with aggressive treatment. We are looking into a consult with Dr. Olivier at the NIH, but he is not able to take new pt's for 6-12 months, our docs are in phone/email consult with him. It sounds like the Denver National Jewish Health has some expertise in NTM. What has been your experience there? Do you recommend going there? We are just trying to look at all our options.

Thanks,
Missy

 

[DrRoe]

I agree with the 3 antibiotic treatment and am surprised they only had him on one. Did they do a culture that showed it was gone? My son's been on Amikacin (inhaled), Azithromycin and Cefoxitin (IV) for a year. He just had a bronchoscopy to check on his progress and see if he's still culturing Abscessus. It showed his right lung looked good but he left one is still not looking good. Lastly, he culture shows he still has M. Abscessus. On a good note though his CAT scan did show some improvement in his left lung.

My concerns are that his infectious disease doc just doesn't seem to believe abscessus is a real problem so she is only reluctantly treating him due to his very aggressive demanding mom (that's me). She holds this belief firmly even though his PFTs were declining steadily prior to treatment, he doesn't culture anything else and I gave her a copy of a research article that clearly states that M Abscessus in CF is a problem and needs to be treated. Luckily, the treatment he's on at least stopped the decline, and increased, his PFTs slightly.. a major increase in his PFTs came from the Kalydeco. I know of two antibiotics that seem to have some potential for treating it, but neither are available/approved in the US for this bug and his doc is not willing to go to explore them as options. Sighhh... I guess when/if that new antibiotic is formally approved in Europe I will have to somehow put together the money to take him over there for treatment.

 

[jessconn]

Dr. Roe,

If you don't mind me asking, what are the 2 anti's that can help treat the m. abscessus, that aren't approved yet?

Thanks,
Missy

 

[SueCameronBell]

Hi all. I live in England and have a son who's 20 with CF. I'm not putting his name as he's choosy about who he tells abouthis CF. I've been reading for quite a while now but only just joined.Hehas Mabcessus and has cultured it for around 5 years. He's looked after by a Specialist CF Centre inYorkshire. My son has been on Azithromycin (by nebuliser), and Clarithromycin since this bug was cultured. It seems to keep things in check and he hasn't had IV's for almost 2 years - his last being when he had pneumonia. He looks after himself really well (thank goodness) and is a full time golfer -hoping to turn professional some time later this year (fingers crossed). He is an avid gym bunny and that helps heaps. His lung function has historicallybeenvery good although has fallen over the last year slightly - but nothing to really be concerned about at the moment. His last CT scan done recently showed some worsening with areas of brochiactisis and inflammation so we are keeping a close eye. I just wanted to reassure others that mabcessus doesn't have to mean an immediate problem - it seems that (in some people at least) it can be controlled - although I appreciate that it is not likely to be eradicated and I live in fear of it becoming a big problem for him. I would be interested to hear anyone else's experiences as I do worry that it might suddenly flare up and often feel like it's a black cloud hanging over uswaiting to burst He is also on Dnase, fluclox, usual vits and inhalers. In the past there have been challenging times but we are lucky in that he keeps very well.

 

[TonyaH]

Thank you all for your replies. I'm glad I'm not the only one who thinks continuing treatment with just one med is unusual. I am going to ask more about this on Tuesday. We are at a bit of a crossroads because after eight weeks of ivs, Andrew's pfts are actually lower than when we started, and he is starting to cough more again. The next step for us is to give his liver a break and try him back on oral itraconozole, wondering if his ABPA is causing the problem. We are feeling a bit frustrated at this point.
Sue...congrats on your son's good run with his health! Exercise is one thing I need to push Andrew to do more of. He enjoys bike riding, marching band, etc..but does not actually 'work out'.

 

[SueCameronBell]

Hi - I would definately encourage exercise. My son bounced on a mini trampoline indoors from being able to stand upand was playing football (I guess you call it soccer) from being 5 years of age before he progressed onto golf - and once it became his main career focus he became really concentrated on keeping fit as he saw -during his teens - how not keeping on top of his treatment could affect his performance. I know I am lucky that he is sporty and not all kids are - but I do believe that it has had a significant impact on his health. He runs a lot too and it does make him cough a lot but it's worth it. I guess the abcessus can affect people differently as I know of other people who can't control it no matter what they do and it does cause problems. I have had concerns regarding him being on Azithromycin for so long and the potential sideeffectsbut his Specialist is of the opinion that "if it's not broke don't fix it " which I kind of agree with.

 

[beleache]

Joni, Were you able to eradicate the m. abscessus? Do you now have negative cultures or just continuing to treat? My daughter is 15 and has been culturing m. abscessus for about 2 years now. We have been unable to get a negative culture, even with aggressive treatment. We are looking into a consult with Dr. Olivier at the NIH, but he is not able to take new pt's for 6-12 months, our docs are in phone/email consult with him. It sounds like the Denver National Jewish Health has some expertise in NTM. What has been your experience there? Do you recommend going there? We are just trying to look at all our options. Thanks, Missy</end quote>

Missy,
No, it has not been eradicated (from what I've heard most likely cant be) but my smears are much better so that is an improvement , also culture #'s are better. Also the cavity in my lung caused by the abscessus has closed up ! Ty God.
Denver National Jewish Health & one other hospital in NC are the 2 leading facilities as far as I know for NTM. There may be others but I haven't heard of them..
I see Dr.Gwen Hewitt & absolutely love her. I would warn that they look at things a bit differently than our CF Drs. , so take any & all advice/info into acct. & question everything ..
Dr. Hewitt oversees my m. abscessus & my drs here in N.Y. follow her lead & take care of everything else for me. I am very happy , considering my progress, that I went to DNJ ..
If you have anymore questions dont hesitate to ask. Take care , joni

 

[beleache]

My concerns are that his infectious disease doc just doesn't seem to believe abscessus is a real problem so she is only reluctantly treating him due to his very aggressive demanding mom (that's me). She holds this belief firmly even though his PFTs were declining steadily prior to treatment, he doesn't culture anything else and I gave her a copy of a research article that clearly states that M Abscessus in CF is a problem and needs to be treated. Luckily, the treatment he's on at least stopped the decline, and increased, his PFTs slightly.. a major increase in his PFTs came from the Kalydeco. I know of two antibiotics that seem to have some potential for treating it, but neither are available/approved in the US for this bug and his doc is not willing to go to explore them as options. Sighhh... I guess when/if that new antibiotic is formally approved in Europe I will have to somehow put together the money to take him over there for treatment.</end quote>

This is unbelievable to me that an ID dr. doesn't feel m abcessus is a real problem !! Good for you for being aggressive/demanding in your sons health care !

 

[jessconn]

Hi Joni,
Thanks for your response! I am in the process of trying to get an appointment at National Jewish Health. It's a long trip for us, but willing to do whatever we need to. When you say they look at things a bit different than our CF docs, what do you mean? Looking for any and all info before we go.
Thanks, Missy

 

[semnle34]

I have had M. Absessus for over 2 years now. I started out on the 3 oral meds....Biaxin, Ethambutol and Rifampin. I continued to have severe symptoms so my doctor decided to treat me more aggressively with a 6 week course of IV antibiotics....Amikacin and Clarithromycin. After completing the 6 week round my doctor kept me on Biaxin and Avelox. I hate the Biaxin....it leaves such a nasty taste in my mouth all day. I find myself chewing gum and eating a bag of pepermints a day lol. I havent had any negative cultures yet although the severe symptoms have decreased. The doctor told me it is very difficult to eradicate the bacteria but is possible. At this point we are just keeping an eye on it. Good luck!!!! Exercise is important along with taking the meds religiously.

 

[tbw18]

My son has had M abcessus since he was 15 he went to clinic last month and the for the first time his culture was negative, he is 23 yrs old. We always do inhaled Amikican and take Azithromycin daily, we have done the picc in the past we do Amikican, Ceftin, impenmin, not sure of the spelling, we are so excited we have finally gotten a negative culture after all these years. He is doing well. I would love to talk with anyone about his M Abcessus, or just about CF.

Hope

The sun rises and sets in the eyes of TBW

 

[l21883]

Hi
I am very new to this site but have become very concerned bc my husband who has cf has been recently diagnosed with M. Abscessus. His lung functions were 64% last month and have dropped to 49% last week. I have googled this bacteria and have not been able to find anything that helps me to understand what he may go thru. He has had all the symptoms from coughing up blood to being so fatigued. His CF doctor has not been able to see him since his culture came back but the dr on call and his ent keep comparing this to tuberculosis. Why do they keep saying this and how long will he have to be treated? From what i am getting from this post, it seems like forever... Any information anyone may have for me would be great! Thankyou

 

[TonyaH]

Wow..so sorry I've lost track of this thread. It seems there has been quite a bit of conversation here that I have missed. We still struggle with Andrew's m. abcessus and ABPA. His lung function is continuing to decline. He has been back on iv meds since Thanksgiving, so he is currently being treated with 4 antibiotics....oral clarithromycin, inhaled amikacin, IV meropenem and IV tigicyclene. TBW18, congrats on the negative culture! Any bit of success you can see with this bacteria is something to celebrate!