I've been looking into antibiotic options, should my current treatment not produce results.
I think that tigecycline could be very promising. (I've already got the PICC, so that's not an issue.) However, I know it's REALLY expensive. But how expensive?
So a couple of questions:
1) What's a normal dose of tigecycline for Lyme?
2) Anyone have a rough estimate of cost? (Of course, once I know the dosage, then I could figure out cost.)
I'm just trying to gauge the potential cost/benefit, so I can be more informed when if I bring it up with my LLMD.
Thanks!
-AnnaL
Posted by lymemomtooo (Member # 5396) on :
I really don't know any answers for you but someone just mentioned this at our Lyme Support meeting. In that it killed everything and they were going to soon try it..Peeked my interest.
Let us know if you go this route..lmt
Posted by Sojourner (Member # 9424) on :
50 mgs twice a day.
Someone mentioned about 4900 for the drug for a month (don't quote me, that is from recollection).
It seems to be helping my husband, and so far insurance is paying.
Posted by CD57 (Member # 11749) on :
Check out Infuserve America for their prices, I don't think you can get it cheaper.
Sojourner -- is your husband doing every day?
Posted by AnnaL (Member # 18464) on :
Sojourner--
Thank you! That's what I was needing to know.
-AnnaL
P.S. "Sojourner" is my middle name!
Posted by Haley (Member # 22008) on :
How long does one need to be on it for it to be effective?
Posted by motownlyme (Member # 11485) on :
Tigecycline is powerful. The worst part for me was the nausea. Nothing I've ever been on has caused such intense non-stop nausea. Even thinking about Tigecycline and mepron right now is forcing my gag reflex.
It wasn't until after I went to my follow-up a month later that I discovered this is a fairly common side-effect and my LLMD normally writes an RX for an anti-nausea med just in case.
Somehow this was missed for me and the nurses didn't pick up on it when I called in or they called me. I hope you are one of the lucky ones and don't have this side effect. Please be prepared and ask for an anti-nausea med if you need it.
Levaquin followed by Tigecycline really kicked my butt. For a few months after I was convinced that this combo had destroyed all progress. My LLMD followed up with a final round of Rochephin.
In the end I think the Tige helped. BTW, after you stop the Tige, the nausea, at least for me, hung around for a few days - don't let that freak you out- Go for it if you can!
Posted by Sojourner (Member # 9424) on :
Motown--- How long were you on the tigecycline?
AnnaL---- With a middle name like Sojourner you must of had cool parents! As a history teacher, I always enjoyed introducing my high school students to Sojourner Truth. She is one of my heros!
Posted by motownlyme (Member # 11485) on :
I think I did two rounds of it - so that would be 3 or 4 weeks.
Posted by dmc (Member # 5102) on :
I did 4 months. Nausea 1st month, less as time goes by. I didn't need anti-nausea meds, just ate crackers & ginger ale.
Was eating while infusing the last month.
Posted by CD57 (Member # 11749) on :
DMC, how did you do 4 months, holy cow? 2x/day? by itself or with something else?
Posted by bigstan (Member # 11699) on :
My LLMD initially first suggested we try Tigecycline the first time I saw him. This was about two years ago.
We then decided to go the Rocephin way. Followed by Doxy, Zithromax, and Cefepime. I am better but nowhere near healthy.
I see him again in two days. I will request that I try Tigecycline. I'm hearing great info about this drug. I will get on it and let people know the results.
One thing in a book that I have says
" most hopeful breakthrough from these findings relates to more effective treatment for Lyme disease with the powerful antibiotic tigecycline. Tigecycline kills Lyme in twenty-four hours in a test tube!
Dr. L says this is 100 times more active against the spirochetes than Doxycycline, a universally preferred drug at the moment."
So it looks promising.
KA
Posted by CD57 (Member # 11749) on :
how long are people taking this?
Posted by Rumigirl (Member # 15091) on :
Infuserve quoted a price of $5,010 per month, including supplies, plus shipping. Not for the faint of heart, if you have to pay out-of-pocket, as I would. I checked to see if Patient Assistance was possible either with the manufacturer, Wyeth, or any other way. None is available for this med. Unfortunately.
I really want to do it, but am not sure if it's worth paying that much or not. It's a hefty cost!
Posted by Hopeful2010 (Member # 22958) on :
My Doctor has approved taking Tigecycline as long as it is FDA approved. I couldn't believe it. From what I can see it is FDA approved.
Does anyone else out there have experience with this medicine.
DMC - do you feel this drug helped you? You had it for 4 months.
Any comments appreciated.
Posted by dmc (Member # 5102) on :
Honestly it was the BEST for me. Did orals for 6 yrs. had improvements but just not lasting.
Wish I didn't get the clot. Would have liked to do it longer.
I have/had the MS manifistation of Lyme. I'd do it again.
The nausea does go away...for those doing it, hang in there.
Posted by Hopeful2010 (Member # 22958) on :
DMC - I tried to IM you but your box is full.
Do you mind if I ask how you got a blood clot and how did they treat it? I recently got a port and I have been told that I need to think about blood clots. Did you have a PICC?
So the benefits you received were lost?
How long have you been ill?
Thanks,
Haley
Posted by seekhelp (Member # 15067) on :
Bigstan, i presume you don't see a MI LLMD? Posted by Tracy9 (Member # 7521) on :
DMC, I have had two blood clots and they still gave me another line. Curious as to why getting a clot precluded you from continuing with treatment, what kind of clot was it? Mine were just superficial at the PICC site, but even though I have a clotting disorder I am still able to have a line, I just take low dose Coumadin.
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