So I have been dealing with this crap for over 3 years now. On meds off meds, oral then IV. Just finished an 8 week Stent of IV meds. I was feeling pretty good but now I'm starting to feel fatigue again and coughing alot. My PFT's tend to drop when the Myco is active. My body has become resistant to everything except Biaxin and Zyvox. Unfortunately I had a horrible allergic reaction to the Zyvox and can't take it. I broke out in this crazy rash on my face and chest. I'm at a loss. Anybody else having the same problem? I have the NTM abcessus now. I really don't want to go back on the IV'S again. Any info or suggestions would be greatly appreciated. Thanks so much!!!!!
Non Tuberculosis mycobacteria
- Thread starter semnle34
- Start date
Hi
As of right now I am 2 months into my m.absessus treatment. The regimine they have me on was a collaboration between my CF team and Infectious Disease. I have a port and I take cefoxitin 2g every 4hrs, oral clarithromycin (biaxin) 500mg 2x/day, and 2mL of inhaled amikacin 1x/day. But that is just me, there are a couple other CFers with m.abssessus and their treatment is a little different.
The key, so I'm told, is a constant "kill cycle" for 6 to 18 months. The range is so vast because once they get all clean samples from your 3 within 10 days, then the treatment is for a remainder of 6 to 12 months.
The CF doctor I have is amazing, she is an absolute genius. I go to UCSF in California.
If you have any question please feel free to ask me
Katie
As of right now I am 2 months into my m.absessus treatment. The regimine they have me on was a collaboration between my CF team and Infectious Disease. I have a port and I take cefoxitin 2g every 4hrs, oral clarithromycin (biaxin) 500mg 2x/day, and 2mL of inhaled amikacin 1x/day. But that is just me, there are a couple other CFers with m.abssessus and their treatment is a little different.
The key, so I'm told, is a constant "kill cycle" for 6 to 18 months. The range is so vast because once they get all clean samples from your 3 within 10 days, then the treatment is for a remainder of 6 to 12 months.
The CF doctor I have is amazing, she is an absolute genius. I go to UCSF in California.
If you have any question please feel free to ask me
Katie
Thanks for responding Katie615....
I have done never inhaled Amikacin but I usually do that via IV. I have been on and off the oral doses Ethambutol, Rifampin and Biaxin for the past few years on one year to 18 months then a few sputum's show up neg so I get a little break them BAM its back again with a vengeance. Usually we'll start out with IV and follow up with pills. Problem is now that I've been combating this for several years now my body is resistant to everything. I'm going to see a new Infectious disease doctor in Miami next week so hopefully he can come up with a solution between him and my CF doctor. My CF doctor is absolutely amazing too and has tried his best. It just seems like this damn Myco wants my lungs lol :0) I'm trying to stay positive but staying on IV's for long periods of time is not my idea of fun.
I have done never inhaled Amikacin but I usually do that via IV. I have been on and off the oral doses Ethambutol, Rifampin and Biaxin for the past few years on one year to 18 months then a few sputum's show up neg so I get a little break them BAM its back again with a vengeance. Usually we'll start out with IV and follow up with pills. Problem is now that I've been combating this for several years now my body is resistant to everything. I'm going to see a new Infectious disease doctor in Miami next week so hopefully he can come up with a solution between him and my CF doctor. My CF doctor is absolutely amazing too and has tried his best. It just seems like this damn Myco wants my lungs lol :0) I'm trying to stay positive but staying on IV's for long periods of time is not my idea of fun.
I just had the cefoxitin via my port as well for 8 weeks along with something else I cant even think right now ughhhhhh then the idea was to keep me on oral meds the Biaxin and Zyvox permanently. Then I got that awful allergic reaction to the Zyvox. Are you doing the IV regiment for a year? Im willing to do that if that's what it comes down to but I think my insanity level will be questionable LOL My port was so inflammed and irritated after the 8 weeks of IV therapy. I cant imagine a year of treatment through the port.
Okay, so I'm about to type a lot...sorry.
So you do have a port? How often were they changing the needle and what gauge were they using?
I'm using inhaled amikacin instead of IV because the side effects for IV can be renal damage and I have diabetes and have already had a kidney stone.
Also, with doing oral, IV, and inhaled at the same time I am using every method possible to kill this bacteria.
The whole sanity thing...yes sometimes you feel like "I'm going to lose it if I have to do this for another day, let alone a friggin year!" But honestly the past two months have gone by pretty quick. The other thing too is depending on the delivery of the antibiotic (pump, intermate ball, push, or gravity drip) will depend on your sanity. I have a pump because it is every 4 hours. So technically I can just stay attached all day then change my bag and tubing at night and that way there really isn't much to do. Carry the stupid bag around all the time, now that gets annoying.
I know that treating m.absessus is very difficult and there are a lot of variables from patient to patient. How your pfts are and if they are decreasing or not and how long you have had the bacteria.
My CF doctor doesn't really want to do this for more than a year though, because of the risk of antibiotic resistance. But every case is different and I think I would be okay if the m.absessus didn't go away because I haven't had a decrease in my lung functions since the diagnosis. I shouldn't say too much about that though, I don't want to jinx myself :/
Hope some of this helped ?
Katie
oh and I think that results and treatment vary depending on your genotypes
So you do have a port? How often were they changing the needle and what gauge were they using?
I'm using inhaled amikacin instead of IV because the side effects for IV can be renal damage and I have diabetes and have already had a kidney stone.
Also, with doing oral, IV, and inhaled at the same time I am using every method possible to kill this bacteria.
The whole sanity thing...yes sometimes you feel like "I'm going to lose it if I have to do this for another day, let alone a friggin year!" But honestly the past two months have gone by pretty quick. The other thing too is depending on the delivery of the antibiotic (pump, intermate ball, push, or gravity drip) will depend on your sanity. I have a pump because it is every 4 hours. So technically I can just stay attached all day then change my bag and tubing at night and that way there really isn't much to do. Carry the stupid bag around all the time, now that gets annoying.
I know that treating m.absessus is very difficult and there are a lot of variables from patient to patient. How your pfts are and if they are decreasing or not and how long you have had the bacteria.
My CF doctor doesn't really want to do this for more than a year though, because of the risk of antibiotic resistance. But every case is different and I think I would be okay if the m.absessus didn't go away because I haven't had a decrease in my lung functions since the diagnosis. I shouldn't say too much about that though, I don't want to jinx myself :/
Hope some of this helped ?
Katie
oh and I think that results and treatment vary depending on your genotypes
W
windex125
Guest
I don't want t get anyone depressed, that is the least thing on my mind but I also battled MAC in the early 90's it is now resistant to everything, once you have it - its like luggage there forever, may not come up at ever sputum test, cause after all we cough up and it can come from anywhere in the lung. But I also was on a cocktail of drugs way back when and then we just let it be. It comes in on every sputum test, though we do not treat it with any NTB drugs at this time. It's my main problem as I now have only one functioning lung. Which my pfts are around high 40's I don't want to upset anyone but the fact is we can see infection disease doctors, get cocktails for this nasty bug but for how long without damaging other organs. It comes with the territory I read up on it so much abt it coming from dirt and water. I stopped gardening, I got rid of all indoor plants. The meds turned me orange like color like when I used too much coppertone from the 60's-70's now they have improved on the tanning products LOL but at this point I stay on a oral all year and pray a lot. I wish you all the best Pat-59/CF
Michael Klein
New member
So, with m.abscessus, as Katie said, it's difficult to treat. This is do to its thick extra-cellular membrane as well as it's ability to adapt from smooth and rough (which goes hand in hand with ability to mutate) organisms. Although it is "acid fast" it's slow as Moses - MAC is even slower (but it's cell wall isn't as thick). This means that CT scan will vary from every 1-2-3 months as new infiltrates will become evident over time while other "older" m.abscessus infiltrates will start to go away (if they are susceptible or show intermediate susceptibility - in theory). So, the slow growth and thick cell wall that the antibiotics need to penetrate, if they can, is what causes the long duration of treatment, the gradual onsets of pulmonary exacerbation, and the prolonged sickness or crappy fellingess that is associated with the infection. This makes it clinically hard to treat because patients may appear perfectly fine but feel weak, but also diagnostically hard to treat because progress is hard to determine. Which corresponds to what Katie said again about the "risk vs. benefit" issue. Prolonged exposure to the particular antibiotics that treat the infection can cause a lot of havoc in the body. One can see the dilemma. What also matters, and is a huge factor is the subgroup of m.abscessus that is involved: There are three. One exhibits (in general) susceptability to the usual antibiotics, another is split between intermediate and resistant, while the third one is usually resistant to just about everything. Usually the second or third case are associated with the inability to be culture negative (most likely 2nd) which means either prophylactics, or an intense beat down when a flare up happens. Now, as far as resistance goes, maybe your doctor was talking about only using one antibiotic with m. abcessus katie because that will/can cause resitance in long treatments. That's not usually the case however with multidrug treatment- if m.abcessus is hit with two antibiotics that set it back then continually (or at least until smear is negative - not culture) inducing those will not allow m.abcessus to mutate because of the variation of the drugs hitting them.Lastly, the extent of M.abscessus damage is not determined by CF genotype - it's determined by environmental factors (i.e. exposure to the dude) and the sub-category of m.abscessus that is contracted which is also environmental.Treatment is almost independent of all of these- in vitro testing does not confirm in vivo susceptibility - these all contribute to why m.abcessus is so hard to treat and sometimes not fully clearable and is why in the non-clearable case that treatment consists of suppressing the infection when it becomes active. I'm so sorry you guys have had such a rough time with the guy :/ I'm going through the same thing at the moment (actually writing this in a hospital bed lol). Take care guys! And sorry to hear about all the problems with the antibiotics semnle34, that's not fair. I can't take Tigacycline, or amikacen (both inhaled and I.V.) because of adverse side effects - go with the IV's if you can tolerate them medically - it might be more of a beating down process (i'm not sure of your exact situation with the bug) which should make you feel better within a few months. However, the downside of that is having to do that every time it flares. I'm sure your doctors will find the best way for you! And I hope they do too And same with everyone else that is having problems with any type of NTM infection!
And same with everyone else that is having problems with any type of NTM infection!
H
Hail2Pitt
Guest
I'm battling M. Abscessus as well. I was diagnosed with both CF and M. Abscessus seven years ago, and have been on and off antibiotics ever since.
I'm currently one month into a regimen of IV cefoxitin, inhaled amikacin, oral azithromycin, and oral clofazimine, and I'm expecting it to last a while. The last time I was treated, I was on IVs for twenty months, so I'm anticipating a similar duration this time around.
semnie34 and Katie615 - I took cefoxitin when I was originally diagnosed, and took it 2g every 4 hours. This time, I'm doing a continuous infusion of 8g overnight (over a period of 8 hours), and then nothing during the day. I'm not sure why my doctors chose this approach, but it's nice that I don't have to carry the pump around with me everywhere which I had to do previously. If you get sick of the pump, it might be worth asking your doctor if this approach could work for you.
Also, I'd like to ask you about your ports! I always had a Hickman catheter in the past, and this is the first time I've had a port. One month in, I'm not too thrilled. The needle is annoying - it sticks out pretty far (you can see it under everything I war), and it hurts when it gets bumped (which happens all the time!). Also, because the needle is kind of big, the dressing around the needle kind of pulls up on the skin and is causing a lot of irritation. It seems the port is a good option for folks who are on IVs a lot for short durations (e.g., a couple weeks). But, for those of us who are on long-term IVs, I'm not sure why it's a better option than a tunneled catheter like a Hickman. And, I'm struggling to imagine another 19ish months walking around with a port that is accessed all the time. How have your experiences been with your ports?
I'm currently one month into a regimen of IV cefoxitin, inhaled amikacin, oral azithromycin, and oral clofazimine, and I'm expecting it to last a while. The last time I was treated, I was on IVs for twenty months, so I'm anticipating a similar duration this time around.
semnie34 and Katie615 - I took cefoxitin when I was originally diagnosed, and took it 2g every 4 hours. This time, I'm doing a continuous infusion of 8g overnight (over a period of 8 hours), and then nothing during the day. I'm not sure why my doctors chose this approach, but it's nice that I don't have to carry the pump around with me everywhere which I had to do previously. If you get sick of the pump, it might be worth asking your doctor if this approach could work for you.
Also, I'd like to ask you about your ports! I always had a Hickman catheter in the past, and this is the first time I've had a port. One month in, I'm not too thrilled. The needle is annoying - it sticks out pretty far (you can see it under everything I war), and it hurts when it gets bumped (which happens all the time!). Also, because the needle is kind of big, the dressing around the needle kind of pulls up on the skin and is causing a lot of irritation. It seems the port is a good option for folks who are on IVs a lot for short durations (e.g., a couple weeks). But, for those of us who are on long-term IVs, I'm not sure why it's a better option than a tunneled catheter like a Hickman. And, I'm struggling to imagine another 19ish months walking around with a port that is accessed all the time. How have your experiences been with your ports?
I started growing m. abscessus in 2008. I have been on aggressive treatment for the past 3 1/2 years, but I've not had very good results. I am currently on Cefoxitin IV, Amikacin IV, Clofazimine, Linezolid (Zyvoxam), Azithromycin and Cipro. The meds seem to keep me from getting very sick, but they're not fighting off the infection. I had a really bad flare up last year that resulted in a six-week hospital stay.
I run my Cefoxitin by pump, which I carry everywhere with me. I generally disconnect once a day to go to the gym and to shower. The Amikacin I run using an IV pole a few times a week. I went and bought a bag to carry my pump and IV bag around in. It's better looking and much more comfortable than the one provided by the pharmacy.
The one drug that they think would really help me is Tygacil, but it gave me pancreatitis. Apparently, this is a common side effect for people with CF.
There's a new drug called Arikace, although I'm not sure where it is in the approval process. My NTM specialist told it will be more effective than inhaled Amikacin, although he acted like it wouldn't be as effective as IV Amikacin. Hail2Pitt above mentioned this drug to me. He participated in the research study. Here are his comments about it on this page: http://forum.cysticfibrosis.com/thr...cessus-—-Long-IV-treatments?highlight=arikace
If you're on Amikacin, particularly the IV form, I would recommend regular hearing tests. I have had some hearing damage as a result of the IV form, but my really bad flare up last year happened while I was on the inhaled version of the drug.
I would also be interested in people's experiences using a port for long-term IV treatments. I've been having problems with my PICCs recently. They have been encouraging me to get a port, but it doesn't seem like it's a great option if I'm going to be accessed full time.
Sorry that I don't have a more encouraging story. I have been told about another person in my clinic who had a much better response to treatment than I did.
I run my Cefoxitin by pump, which I carry everywhere with me. I generally disconnect once a day to go to the gym and to shower. The Amikacin I run using an IV pole a few times a week. I went and bought a bag to carry my pump and IV bag around in. It's better looking and much more comfortable than the one provided by the pharmacy.
The one drug that they think would really help me is Tygacil, but it gave me pancreatitis. Apparently, this is a common side effect for people with CF.
There's a new drug called Arikace, although I'm not sure where it is in the approval process. My NTM specialist told it will be more effective than inhaled Amikacin, although he acted like it wouldn't be as effective as IV Amikacin. Hail2Pitt above mentioned this drug to me. He participated in the research study. Here are his comments about it on this page: http://forum.cysticfibrosis.com/thr...cessus-—-Long-IV-treatments?highlight=arikace
If you're on Amikacin, particularly the IV form, I would recommend regular hearing tests. I have had some hearing damage as a result of the IV form, but my really bad flare up last year happened while I was on the inhaled version of the drug.
I would also be interested in people's experiences using a port for long-term IV treatments. I've been having problems with my PICCs recently. They have been encouraging me to get a port, but it doesn't seem like it's a great option if I'm going to be accessed full time.
Sorry that I don't have a more encouraging story. I have been told about another person in my clinic who had a much better response to treatment than I did.
Thank you so much for all your replies. I am in a way glad but NOT really to hear that I'm not the only one dealing with this crap. I am one of those cases who has become resistant to every drug used to combat NTM minus Biaxin and Cefoxitin. I am going to see an Infectious disease doctor next week to see what he has to say. I am willing to go back on the Cefoxitin IV pump again via my port if necessary. I appreciate the two meds Tygacil and Arkace being mentioned. Never heard of those before so I will def discuss those and see if they may be an option. I know once you have NTM especially Absecessus its practically impossible to eradicate. I look perfectly fine from the outward appearance but I am absolutely exhausted 24/7 and sleep so much. I cough all the time and have never ending chest pain. I cant imagine this is something that I or we will have to just deal with. Good Luck to everyone. Any new information that you find out or any new meds that have worked please share!!!!!! Almost forgot there is a treatment center that I heard of in Tyler Texas that specifically deals with MAC Its at the University of Texas Health Center. The doctor is Dr. Richard Wallace. He supposedly treats patients with CF and MAC. Anyone heard of him or the center?
So as far as the port goes, if you have only had it for a month, it should start to feel much better soon. I had mine placed July 10th and I don't even feel it there anymore (except when they change the needle once a week). But it was sore for a while, I started to feel the same way, like is this stupid thing really worth it.
The size of the needle was a problem for me as well. They were using a 20G 3/4in at first and it was huge! It stuck up so high and did the same thing with the tape. The smallest one I have been able to find is a 22G 3/4in minilock, and it is so much better. It's not perfect, but a lot better.
Hope this helps ?
oh and do you have a nurse coming to your house to change the port needle or do you go somewhere?
The size of the needle was a problem for me as well. They were using a 20G 3/4in at first and it was huge! It stuck up so high and did the same thing with the tape. The smallest one I have been able to find is a 22G 3/4in minilock, and it is so much better. It's not perfect, but a lot better.
Hope this helps ?
oh and do you have a nurse coming to your house to change the port needle or do you go somewhere?
The US centres of excellence that I hear mentioned most often are the National Institutes of Health in Maryland and National Jewish in Denver. My NTM specialist mentioned the Tyler Texas centre to me the last time I saw him.
Because my NTM specialist doesn't see very many CF patients, my CF doctor contacted three other NTM specialists with more CF patients to see if they had any new thoughts. She contacted the NIH Maryland, Jewish Denver and a doctor in the UK (I think Cambridge). Although the doctors came back with some tweaks to dosage, none of them suggested other medications. This is reassuring that I'm on the best meds for my case, but I was hoping for some new drug we hadn't already tried.
In terms of Tygacil, it's very expensive. In Canada, it runs about $5,000 a month. The US is usually higher. If you have drug coverage, it should be easy to make a case to the insurance company as to why you need it.
Good luck to you as well! I hope they can find something that works for you.
Because my NTM specialist doesn't see very many CF patients, my CF doctor contacted three other NTM specialists with more CF patients to see if they had any new thoughts. She contacted the NIH Maryland, Jewish Denver and a doctor in the UK (I think Cambridge). Although the doctors came back with some tweaks to dosage, none of them suggested other medications. This is reassuring that I'm on the best meds for my case, but I was hoping for some new drug we hadn't already tried.
In terms of Tygacil, it's very expensive. In Canada, it runs about $5,000 a month. The US is usually higher. If you have drug coverage, it should be easy to make a case to the insurance company as to why you need it.
Good luck to you as well! I hope they can find something that works for you.
W
windex125
Guest
I use a 22 3/4 needle as well in my port when it is in use, and I find it very comfortable. ood Luck to you all. Pat/59-
Windex & Katie615 I was trying to give you both a thumbs up for the needle size....def the best size for the port. 20 is too big and sticks out too much. I access my own port and usually put a piece of gauze under the wings as I call them even though my doctor doesn't like that. I just think it gives it a little extra cushioning in case it gets hit or bumped into. Everyone is different with their port care. Michael thanks again for the info on the Tygacil, I emailed my doctor earlier today and am waiting to hear back from him. My insurance denies pretty much every medication my doctor prescribes to me as it is so Im sure my doctor will be fighting for this one too if Im not resistant to it. This could be something great here. I'm glad your doctor also has heard of the center in Tyler Texas. Might be worth a trip to Texas :0)
Katie I wasn't sure if your question was for me or someone else but right now I am just taking Biaxin for the NTM. I was suppose to be taking Zyvox along with it in combination both oral meds. Now I'm back to the drawing board because of the allergic reaction to the Zyvox and resistance to everything else. Before I was on the trifecta Ethambutol, Rifampin and Biaxin. I grew resistance after 18 months of being on them :0(
Katie I wasn't sure if your question was for me or someone else but right now I am just taking Biaxin for the NTM. I was suppose to be taking Zyvox along with it in combination both oral meds. Now I'm back to the drawing board because of the allergic reaction to the Zyvox and resistance to everything else. Before I was on the trifecta Ethambutol, Rifampin and Biaxin. I grew resistance after 18 months of being on them :0(
H
Hail2Pitt
Guest
Thanks for the needle information! It seems like 22 3/4 is the consensus - I'll check what mine is. Sorry to be annoying, but is it possible for you to tell me the exact brand, name, and even serial number? I'd like to look it up and see if my home care company can get it for me.
Tyler Texas, National Jewish, and NIH are the top three NTM places in the country. Some CF centers are extremely knowledgeable as well (e.g., Pittsburgh, where I go, really knows their stuff). I went to National Jewish several years ago and had an excellent experience, but then decided to go to NIH because it's closer to me. I am now a patient of Dr. Olivier, and he's fantastic. At times he directs my treatment (e.g., when I was on the Arikayce clinical trial), and other times he is kind of a consultant for my doctors (which is the case now).
National Jewish has a program where you go out there for several days and get an extremely thorough evaluation. That's what I did shortly after I was diagnosed, and I was so glad that I did. I really learned a lot about the disease and how to try to manage it. I'd definitely recommend looking into it. Perhaps Tyler and NIH have something similar...
Those of us with Abscessus know that there are only a handful of antibiotics we can take. Like others on here, I'm pretty resistant to everything. Right now, I believe my bug is susceptible to Tygacil (haven't tried it yet - I think it's rough on your stomach, and they're kind of saving it for when I REALLY need it), and I'm intermediate to Cefoxitin and Primaxin. But, the susceptibility testing doesn't tell the entire story. When drugs are in your body, they work differently than they do in a petri dish. And, the synergistic effect of multiple drugs isn't shown by the susceptibility testing either. I think the susceptibility testing does tell a lot - it indicates how tough your bug is to treat, and it definitely guides the doctors when they decide what drugs to use. But, I believe treating this thing is part science, part art, and so you do really need a knowledgeable doctor when it comes to Abscessus.
If you haven’t heard of Arikayce, check it out:
http://www.zacks.com/stock/news/137482/Insmed-Soars-on-Arikayces-Breakthrough-Designation
The big news from their Phase 2 trial is that 21 of 68 patients were culture negative at the end of 168 days. For me, I stayed smear positive, however the reduction in mycobacterial density was significant. And physically, I saw a big difference with my cough and my energy level. If I could have stayed on it longer, I can't help but think I would have become culture negative based on how well it was working for me. My guess is we’re still probably a few years away from FDA approval and mass production of this drug, but I think it will eventually help a lot of us!
Tyler Texas, National Jewish, and NIH are the top three NTM places in the country. Some CF centers are extremely knowledgeable as well (e.g., Pittsburgh, where I go, really knows their stuff). I went to National Jewish several years ago and had an excellent experience, but then decided to go to NIH because it's closer to me. I am now a patient of Dr. Olivier, and he's fantastic. At times he directs my treatment (e.g., when I was on the Arikayce clinical trial), and other times he is kind of a consultant for my doctors (which is the case now).
National Jewish has a program where you go out there for several days and get an extremely thorough evaluation. That's what I did shortly after I was diagnosed, and I was so glad that I did. I really learned a lot about the disease and how to try to manage it. I'd definitely recommend looking into it. Perhaps Tyler and NIH have something similar...
Those of us with Abscessus know that there are only a handful of antibiotics we can take. Like others on here, I'm pretty resistant to everything. Right now, I believe my bug is susceptible to Tygacil (haven't tried it yet - I think it's rough on your stomach, and they're kind of saving it for when I REALLY need it), and I'm intermediate to Cefoxitin and Primaxin. But, the susceptibility testing doesn't tell the entire story. When drugs are in your body, they work differently than they do in a petri dish. And, the synergistic effect of multiple drugs isn't shown by the susceptibility testing either. I think the susceptibility testing does tell a lot - it indicates how tough your bug is to treat, and it definitely guides the doctors when they decide what drugs to use. But, I believe treating this thing is part science, part art, and so you do really need a knowledgeable doctor when it comes to Abscessus.
If you haven’t heard of Arikayce, check it out:
http://www.zacks.com/stock/news/137482/Insmed-Soars-on-Arikayces-Breakthrough-Designation
The big news from their Phase 2 trial is that 21 of 68 patients were culture negative at the end of 168 days. For me, I stayed smear positive, however the reduction in mycobacterial density was significant. And physically, I saw a big difference with my cough and my energy level. If I could have stayed on it longer, I can't help but think I would have become culture negative based on how well it was working for me. My guess is we’re still probably a few years away from FDA approval and mass production of this drug, but I think it will eventually help a lot of us!
Sure, it's a minilock safety infusion set 22G x 0.75in. (0.7mm x 19mm)
Mine is made by BARD ref S02022-75 (those are zeroes)
Thats pretty much all the info on the package, let me know if you have any trouble and I can take a picture of it and send it to you and maybe that would help.
Mine is made by BARD ref S02022-75 (those are zeroes)
Thats pretty much all the info on the package, let me know if you have any trouble and I can take a picture of it and send it to you and maybe that would help.
What I meant was that your genotypes play a role in the health of your lungs. I believe that different genotypes affect different aspects of CF differently. So therefore I think your genotypes do play a role is the whole aspect of things. But your right, not in the manner of amount of damage, I should have clarified myself better.
Hi I'm in the UK and have just been diagnosed with mycobacterium abscessus. The protocol here is to hit it hard and fast. So iv tigecycline (immediately given with an amazing antisickness called emend to stop the nausea and vomiting as so important to tolerate it) iv amikacin iv meropenum oral clarithromycin then 18 mths of 3 orals plus amikacin nebuliser. The consultant here also specialises in mycobacterium. So far they have an 80% eradication rate which they are now taking to the cf conference in America. I hope this may help some off you and I hope it works on me too!
This is the link to their protocol www.rbht.nhs.uk/healthprofessionals/clinical-departments/paediatrics/childrencf/appendices /appendix-ii /
This is the link to their protocol www.rbht.nhs.uk/healthprofessionals/clinical-departments/paediatrics/childrencf/appendices /appendix-ii /