Topic: Who is doing or has done Tigecycline--how much has it helped you??
Rumigirl
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Member # 15091
posted
Who is doing or has done Tigecycline? I've done searches and looked up, but wanted to check as of now.
How long did you do it, or are you doing it? Twice a day dosing? How much has it helped? How did you tolerate it?
Was it covered by insurance?? And, if not, is Infuserve the cheapest place to get it? It's expensive!! Do you feel it is worth the expense, if you had to self-pay??
I am very interested in doing it, as I've had some improvement on IV ceftriaxone, but not as much as I would have expected.
I've been on the ceftriaxone since the beginning of April. But I did get rebitten on Memorial Day weekend. Added doxy, but still got Bell's Palsy in the beginning of Aug. and went seriously downhill after the bite! Then added Babs tx and LDN, now improving.
I doubt that I could get Oxford to pay, although I would try. If I have to self-pay . . . that's about $10,000 for 2 months!!! At that price, I could consider the Bionic 880. But I've heard some people get 98% better in 2 months on Tigecycline (prob not if you've had it for decades like me).
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posted
Hey Rumigirl, I was going to ask the same question about who has done it. I see my LLMD Thursday and Tigecycline is next on the list. He said patients really respond to this med so were going to give it a go. I don't know about the price but my insurance helps me out with 90% coverage. Ceftriaxone gave me a little improvement but not nearly what we wanted to see. So I will post in a few months about what I think about Tigecycline.
Karl A
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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Rumigirl
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bigstan,
Definitely let me/us know as you go along. Boy, if you get it covered, you're lucky! It's so expensive! I don't know how I would
afford it out of pocket, but I am ready for bigger guns. Although, the other question is: can I tolerate it?? Infuserve says that the people they know on it are tolerating it ok.
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CD57
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Infuserve is definitely the best place to get it. Can't beat the price or the people who work there. Tygacil makes some people throw up and need nausea meds.
Posts: 3528 | From US | Registered: Apr 2007
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posted
Tige caused "sneak up" nausea for me. The first couple of doses I did OK, then bam. Unending, horrible nausea 24/7. I was taking it with Mepron and those two together were something else.
I still don't know how I could get the Mepron down during that time, but I only threw back up one dose of it. All I could think was , "I just threw up about $100 worth of war paint." At that time I was takng almond butter with the Mepron and I can't even look at almond butter now without getting nauseous.
I can't yet say if it helped. I cycled from Levaquin to Tige. Between the two cycles I was knocked for a major loop for months. LLMD seemed to think it was hitting what it needed to in a big way.
I'm back on Rocephin and then off for a few weeks. Guess I'll be able to tell then.
My suggestion, if you are one of us that gets the nasty nausea side effect - don't try to push through like I did without anti-nausea meds. It took a solid four days after my last dose before the intense nausea finally faded away.
Posts: 237 | From WV | Registered: Mar 2007
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dmc
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Member # 5102
posted
I did it 2X daily for 4 months. Had to stop due to blood clot. (yes did anticoagulant shots also).
It was the wonder drug for me. 1st month tough but got easier. Just ate on crackers & ginger ale when I felt nausea. After the month didn't get any ill feelings.
Did high oral dose amoxi after. Been off all abxs since 4/09 & doing okay. Haven't relapsed.
Just started on LDN, sept/09.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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Hoosiers51
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dmc,
At what point during the 4 months did you start to notice improvement?
Was it 3 months in....within a couple days....etc..?
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Rumigirl
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Whew, Motownlyme, that sounds intense! I'd heard that the nausea could be intense with Tigecycline. I"m on Mepron now, too.
I just had two days of HORRIBLE nausea from, I guess, the IV ceftraixone, plus my orals. How long did you last on the Tigecycil?
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
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dmc and others,
Did your insurance cover the Tigecyciline?? If not, how much did it cost? Infuserve said they thought @ $160/day, not including the supplies!
And did everyone do it twice/day every day? (Just wondering how many could tolerate it at that dosage).
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Rumigirl
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up
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dmc, you said you had to stop due to blood clots.
Are blood clots a side effect of tigecycline?
Are others who are on it also on anticoagulant meds?
-------------------- Wishing You Showers Of Blessings! Lyme since Fall 1983 = Diagnosed Summer 2008 IV Rocephin 7 weeks Stopped due to drug fever Now doxycycline "For I know the plans I have for you...plans to give you hope and a future." Jeremiah 29:11 Posts: 430 | From Sunny South | Registered: Jul 2008
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dmc
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Member # 5102
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sorry, been busy,
To answer questions. At the 3rd month mark I was planning the activities I want to get back into. By then I was eating while doing the IV so no stomach problems.
I never got diarrehea on it. I would take the cheap probiotics from swanson's vitamins periodically throughout the day.
Blood clots are not the side effects of Tigecyl. I have a genetic disposition to them. (Factor V Liedum) That's why I did Lovenox shots 2X daily.
My insurance company paid for everything. In CT there is a law that ins. must pay for extended Lyme treatment if prescribed by a Neuro, Ruemie or ID doc.
My ins. is from my husband's former employer...a self-insured muncipality. He never used it in the 20yrs. We got married & I've made up for that.
Harderest part after the nausea is being "plugged in" for the hour it takes for the IV drip.
PM me if I can help more.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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