Is there anything against Abscessus when Tygacil, Amikacin etc have failed?

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hardclubber

New member
Hi all,
With some desperation, I am looking for some support and ideas on this forum.
I have been hospitalized now 3 times for abscessus infection the last 8 years. The first 2 times I bounced back each time a bit after 11 and 6 months hospitalization, thanks to Tygacil which was just on the market. ANd then I stayed out of hospital for 3 years each time.
After the birth of my daughter (a miracle!! Thx Gd!), I started crashing and was hospitalized 5 months ago.
Unfortunately my abscessus is nowadays resistant against all commonly used drugs such clarithromycin,cefoxitin, moxifloxacin clofamicin,amikacin,meropenem and now also to tygacil. After 5 months in hospital I was discharged this week, as basically there are no options left and the meropenem, amikacin,clarithromycin, tygacil cocktail showed now progress.
So I am in worse shape now as I was when i entered hospital and I am really scared big time. I have a 7 months old daughter and sometimes I fear I will not see here become 1 or 2 years. ALso because transplant is not allowed for abcessus patients.
So I am just wondering if anyone has heard about or has has any experience with any investigational drugs (e.g.bedaquiline) or is on a special regime or has some nice ideas about alternative or supplemental medication. Anything will be much appreciated!!
Thanks a lot and sorry for the melodramatic tone in my message..I am almost 40 and for first time really scared as s...t
Warm regards
Jeanpaul

FEV1: 1,0 ltr, Df508 and E528X, 39yrs, Male, Healthy miracle daughter of 7 months , fighting abscessus
 
A

Aboveallislove

Super Moderator
I am so sorry for what you are facing...which must be doubly hard with you experiencing the love of your precious daughter. I don't know much about abscesses...if it is bacterial at all, you might want to look into phalange therapy...which in Europe is more prevail ant but some FDA testing going on now. Also cystemine has shown some good results as an antimicrobial which also improves cftr function. Cystemine is FDA approved by t would be off label. if either might be worth looking at, let new ow and I'll pull some references, but it might be abscesses isn't bacterial so not sure if those oaths would help. You might also search for older threads for abscesses as I think this has come up before. Please know of my prayers.
 
M

mep65

New member
I am so sorry to hear. My daughter,12, only recently started treatment for Abscessus and she is not able to tolerate cefoxitin or impenum and has been admitted three times in 2 months due to reactions but only for a short time each time. We are just trying tigecycline, but the doctors mention Tedizolid as a possibility is the tigecycline didn't work. (So our current cocktail is amikacin, tigecycline, and Linezolid. ) Unfortunately I don't have any experience with alternative medicines, but it's something I am starting to look into as well.Its a nasty bug and will say prayers for you and your family!
 
H

hardclubber

New member
Hi aboveallislove, thanks so much for your reply. This already gives hope and new insights to continue the fight!! I have been searching pubmed for weeks, but didn;t come across this one. After some research i found this article in which both cysteamine and abscessus are mentioned. So I have some ammo for my next visit, with my pulmo on 9th of October. This article will be handed over in printed format :) . Will let you know what his opinion is.
Thanks thanks thanks! There is spirit enough for the weekend!!

http://www.sciencedirect.com/science/article/pii/S2352396415301109


when you talk about phalangeal, do you mean phage therapy? or something else?
 
H

hardclubber

New member
Hi Mep65, thanks so much for giving some new hope with your reply.
I have been doing some reaseach on Tedizolid, it seems a newer version of linezolid.
Therefore I am just wondering what your docs mean. If tygacil doesn;t work, they will replace Tygacil and linezolid by Tedizolid, as it doesn't seem logic to me that they would use and linezolid and tedizolid which are same family...I guess..
Thanks for sharing this info with me!!
Have a nice weekend, Jeanpaul
 
A

Aboveallislove

Super Moderator
Yes phage therapy.
re cystemine...there are a ton of things coming out now in general on cf...I posted a link to a web cite that pulls it all together...more support to try it sit nice it s very safe and FDA approved. I have to finish treatments but try searching f R it and I'll post when I can in case you haven't found it. Also FYI there are several I've heard of on it off label and that web page person could probably help you get more info.

hardclubber said:
Hi aboveallislove, thanks so much for your reply. This already gives hope and new insights to continue the fight!! I have been searching pubmed for weeks, but didn;t come across this one. After some research i found this article in which both cysteamine and abscessus are mentioned. So I have some ammo for my next visit, with my pulmo on 9th of October. This article will be handed over in printed format :) . Will let you know what his opinion is.
Thanks thanks thanks! There is spirit enough for the weekend!!

http://www.sciencedirect.com/science/article/pii/S2352396415301109


when you talk about phalangeal, do you mean phage therapy? or something else?
Click to expand...
 
K

Krazy4Katie

New member
Check out this one from NIH

I'm so sorry to hear this. My daughter is 18 has high resistant abscessus and pseudomonas and recently this week been told there's nothing else that will work. She will be going home on hospice. We've tried a lot and between her allergies and drug resistance we are out of hope.

But recently I found out from some friends from a private FB group of moms with abscessus and Dr. Olivier from NIH has started prescribing Tedizolid. Not sure if you've been referred to NIH or not but also another one is Clofazamine. Check into those, and also know not every hospital will turn you down if you have abscessus.

We were referred to lung transplant here at Hopkins and we were told they would still list her but she had to have 3 negative cultures back to back. Easier said than done. But my daughter turned them down for the transplant.

Good luck to you and your precious baby





hardclubber said:
Hi all,
With some desperation, I am looking for some support and ideas on this forum.
I have been hospitalized now 3 times for abscessus infection the last 8 years. The first 2 times I bounced back each time a bit after 11 and 6 months hospitalization, thanks to Tygacil which was just on the market. ANd then I stayed out of hospital for 3 years each time.
After the birth of my daughter (a miracle!! Thx Gd!), I started crashing and was hospitalized 5 months ago.
Unfortunately my abscessus is nowadays resistant against all commonly used drugs such clarithromycin,cefoxitin, moxifloxacin clofamicin,amikacin,meropenem and now also to tygacil. After 5 months in hospital I was discharged this week, as basically there are no options left and the meropenem, amikacin,clarithromycin, tygacil cocktail showed now progress.
So I am in worse shape now as I was when i entered hospital and I am really scared big time. I have a 7 months old daughter and sometimes I fear I will not see here become 1 or 2 years. ALso because transplant is not allowed for abcessus patients.
So I am just wondering if anyone has heard about or has has any experience with any investigational drugs (e.g.bedaquiline) or is on a special regime or has some nice ideas about alternative or supplemental medication. Anything will be much appreciated!!
Thanks a lot and sorry for the melodramatic tone in my message..I am almost 40 and for first time really scared as s...t
Warm regards
Jeanpaul

FEV1: 1,0 ltr, Df508 and E528X, 39yrs, Male, Healthy miracle daughter of 7 months , fighting abscessus
Click to expand...
 
M

MichaelL

New member
I'm sorry to hear about your problems. I've had abscessus for seven years and it's greatly affected my health. My current cocktail keeps me out of the hospital, but doesn't actually kill the infection. I'm on Cefoxitin IV, Amikacin IV, Clofazimine and Cipro.

You didn't mention Lenezolid in your original post, but you do in a follow up. This one helped me but I had to stop it due to scary side effects. Have you tried Clofazimine? You mention a drug with a similar spelling, so you may have already tried this one. I've been on it for about 3 1/2 years.

I've seen posts here about a new drug called Arikace. My doctor says it's a super variation of Amikacin. It's not approved in North America yet, but I don't know about the UK. One person on this site had great results while participating in the research study. They're doing more studies right now in North America, so you might want to see if they're also testing it in the UK.

Finally, are you on IV versions of the meds? I've been on IV meds for the past 4 1/2 years. It's a pain, but I think it's reduced my hospital visits.

Good luck -- I hope you can find some new meds to try with your doctor.
 
M

mep65

New member
hardclubber said:
Hi Mep65, thanks so much for giving some new hope with your reply.
I have been doing some reaseach on Tedizolid, it seems a newer version of linezolid.
Therefore I am just wondering what your docs mean. If tygacil doesn;t work, they will replace Tygacil and linezolid by Tedizolid, as it doesn't seem logic to me that they would use and linezolid and tedizolid which are same family...I guess..
Thanks for sharing this info with me!!
Have a nice weekend, Jeanpaul
Click to expand...

Jean Paul,
What I read is that the current protocol is one macrolide, one aminoglycoside and one more antibiotic.

We were doing Azithromycin (macrolide), Amikacin (aminogycloside), and then either imipenum or cefoxitin. Since we are switching to tigecycline (a macrolide and replacing the azithromycin), our other two are amikacin and now linezoild (or tedizold) which are both in the oxazolidinone category. (Sidebar -- I was just in the hospital for several days and looked up the classes of antibiotics on the internet - definitely just learning here).

Does that make sense? I do believe linezolid and tedizolid are in the same family (our doctors said "cousins") but have read some really good results with tedizolid. Unfortunately, its not as easy to get, and we could not get it right now...so we will start with linezolid.
 
H

hardclubber

New member
Hi mep65, we are using the same triple protocol here. Tygacil however has been the last man standing, when all other meds were from the start tested as non-sensitive to abscessus. I will discuss tedizolid. Just wondering if abscessus is resistant against linezolid,what are chances he is sensitive to Tedizolid, but anyway, that is something to find out. There is also Bedaquiline coming to the market, but this is a very dangerous drug and not available to my market as well. Thanks for digging up and searching stuff for me
JP
 
K

ksy8384

Guest
My thoughts and prayers go out to all of you. I had abcessus several years ago. I was put on 3 months of Amikacin and 3 months of Tigacyl. The amikacin took my hearing and the tigacyl just made me feel like crap. But I did persevere and was able to get rid of the abcessus.

For those on amikacin please keep a check on your hearing. I had levels done religiously (I"m a lab tech) and they were always in range. It didn't matter.
 
H

hardclubber

New member
I have did some research as well, but did you find any clinical case reference of Tedizolid in case of Abscessus bacteria?
I only found some in vitro/lab tests.
 
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