Has anyone been on Tygacil?

[Jane]

This is a new one to us. Josh's doctors want to try it for the a-typical mycobacteria he has. It only comes as IV, so it might be a long term thing, with a port -also new to us.

Any advice?

much thanks as always

Jane

 

[anonymous]

All I know is that it is also called Tigecycline .
What's the name of the mycobateria? I might know more about it.
-LisaV

 

[dramamama]

jane-

Who is your doc? Richard Wallace? This is an experimantal drug and we chose not to do it....because the timing was just wrong for us. However, if your doc is Wallace he is great and is the guru when it comes a-typical TB..He is in Tyler, Texas


One negative I have heard is that treating this bug requires long term Amakacin and many people are experiencing hearing loss...so just stay on top of that.

Mandy

What drugs will they be using in conjunction with the Tygacicline?

 

[anonymous]

There's a site just for mycobacteria at <a target=_blank class=ftalternatingbarlinklarge href="http://www.ntminfo.com/">http://www.ntminfo.com/</a> . Rip was dx'd with it at one time so I have a sign on. I posted a question to see if anyone there had any experience.

The other place we used to get info was from National Jewish in Denver. Either their site <a target=_blank class=ftalternatingbarlinklarge href="http://www.njc.org/">http://www.njc.org/</a> or by talking to one of the Lung Line Nurses (see right-hand side bar on their site).
-LisaV

 

[anonymous]

Tygacil isn't experimental any more ( <a target=_blank class=ftalternatingbarlinklarge href="http://www.tygacil.com/">http://www.tygacil.com/</a> ) for some conditions, tho' use for mycobacterial infections isn't listed on their list of conditions it is prescribed for so that use may be "off label".
-LisaV

 

[Jane]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>dramamama</b></i>


Who is your doc?

What drugs will they be using in conjunction with the Tygacicline?</end quote></div>

The bacteria is named segniliparus rugosus. It was only just identified last year. My boys are only two of seven people known to have this bug. Lucky us. It was discovered in Jesse during a bronch in 2003. Because there is no history for treating it, the boys have been like lab rats. Our doctor is Catherine Sheils of Children's Hospital Boston and the Infectious Disease docs. She has gotten a great deal of help from National Jewish too.

We started out with a antibiotic combo of linezolid, gatifloxacin and clofazamine. The linezolid started causing neuropathy so we stopped and started amikacin nebs. We stopped the gati in February because it caused high blood sugar. SO...

Now they want Josh to try tygacil IV, moxifloxacin, and clofazamine.
We'll see what happens.

<a target=_blank class=ftalternatingbarlinklarge href="http://ijs.sgmjournals.org/cgi/content/abstract/55/4/1615
">http://ijs.sgmjournals.org/cgi...nt/abstract/55/4/1615
</a>
Jane

 

[littlemisssilly]

Jane,

So sorry to hear that the boys are so sick, I hope they get better soon! I'll be thinking of you all. <img src="i/expressions/heart.gif" border="0">

 

[LisaV]

"new bug"..
"lab rats"..
been there/done that
HATE it!!! Too scarey....

But it sounds like you're in the right place with the right team.
So as you say all you can do is give it a go...
Rip "walked point" for more than one treatment successfully

Keeping my fingers crossed and the boys and you in my heart..
-LisaV

P.S. No response on use of the drug on the other board yet....

 

[anonymous]

Some replies are beginning to come in on the other board.
You can sign in at <a target=_blank class=ftalternatingbarlinklarge href="http://www.ntminfo.com/support/index.asp">http://www.ntminfo.com/support/index.asp</a> .
If you can't, then PM me and I'll cut and paste the replies back to you as a reply PM here. (Seems bad form to cut and paste to this board.)
-LisaV
...at work and therefore not signed in.

 

[Jane]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>

Some replies are beginning to come in on the other board.

You can sign in at q]


Thanks LisaV, I signed in and read the responses. Good source.
By the way, pulled some strings so the boys will be together!!!

Jane

 

[anonymous]

Great news that the boys will be together!
-LisaV

 

[anonymous]

There's an earlier long thread on the board at <a target=_blank class=ftalternatingbarlinklarge href="http://www.ntminfo.com/support/view.asp?id=3029&s=10">http://www.ntminfo.com/support/view.asp?id=3029&s=10</a> if you haven't found it yet.

I never figured out how to search that blasted board!!!
-LisaV