For those of you who have done Tigecycline, has the progress you made on it lasted, or have you relapsed off of it? Was it worth it?
Has anyone paid for it out-of-pocket? If so, was it worth it? Or would it have been worth it, if you had had to pay out-of-pocket??
My LLMD has given me the go ahead to go back on IV, and told me since I was doing it, to do Tigecycline, along with Rocephin.
I was stunned, actually, as this came at the end of the visit. I would have to pay out-of-pocket, so the price tag, $5,010 +
shipping per month from Infuserve, plus close to $800 for ceftriaxone (the rocephin I might get reimbursed for eventually, but the Tigecycline??).
Plus, I can't imagine being able to tolerate both at the same time! He didn't even think that the IV would necessarily work
for me, as I did ceftriaxone for 5-6 months last year, but had to have my line pulled, due to a leak, and I relapsed off tx.
So I'm reeling trying to figure out what to do. I think I have to go back on IV, as I'm in terrible shape, and have had trouble with one oral after another. Just freaking out about the cost of
Tigecycline, and about whether abx will do the trick. I see so many people relapse as soon as they stop abx, after long
periods on abx. Yet, I had no improvement for 3 1/2 years of aggressive natural txs of many kinds. The abx was the first thing to really help, albeit slowly
Posted by dmc (Member # 5102) on :
Been off all abxs since 4/09, since Tigecyl. I was/MS type Lyme.
It was worth it for me. I have not relapsed yet & if I do, I going to push to go straight on Tigecyl again.
Posted by sammy (Member # 13952) on :
PM sent.
Good luck Rumigirl, I know it is a tough decision you have to make.
Hopefully others will share their experiences with you too.
Posted by Haley (Member # 22008) on :
I took it for only 2 weeks so I really don't know what would have happened if I had stayed on it. My LLMD says that all of his patients have a very difficult time with it. That doesn't mean that people don't get well with it.
DMC - How long were you on it?
Posted by Rumigirl (Member # 15091) on :
Up for replies, please.
Posted by soleil16 (Member # 16326) on :
Up for Rumigirl.
My doctor prescribed this and I have the same type of questions. For what it's worth, he said he's seen some dramatic improvements in neuro Lyme patients with Tygacil.
Posted by Hoosiers51 (Member # 15759) on :
What exactly does "neuro-Lyme" mean? Is fatigue usually included in that, or does it mostly refer to the MS-type symptoms like nerve pain and loss of mobility?
Posted by dmc (Member # 5102) on :
I was on Tigecyl for 4 months...16 weeks. It gets easier. Nausea does stop...wasn't on anything for that.
To me neuro-lyme is the MS type symptoms. The twitxhing, uncoordinated movements. I think some people refer neuro lyme as cognitive, brain fog etc.
Posted by Rumigirl (Member # 15091) on :
Neuro sxs can also be vertigo/balance issues, perceptions off, etc.
Anyone else who's used it?? The cost is what's really freaking me out. There's no way to know if it's worth it or not. But that's a LOT of money!!
And, I'm not happy that my LLMD is saying that going back on IV may not work (because I relapsed after I had to have my line pulled). To me, it's not surprising that I relapsed. I certainly wasn't at all done with tx.
Posted by Sojourner (Member # 9424) on :
My husband has been on it for four months. He has improved a great deal. We are lucky, so far insurance has paid for it all......however, when he first started, we were not at all sure they would pay, and were prepared to pay out-of-pocket.
I think it just depends on your situation. If you have tried everything (sounds like you have), and are at the end of your rope, it becomes a lot easier to make a decision.
This looks like it will be his last month on the tig w/ the addition of rocephin just to clean up the nooks and crannies.
Posted by Rumigirl (Member # 15091) on :
Thank you, Sojourner, keep me/us posted about how it goes for him after he finishes the course. Does the LLMD intend to have him
continue on with other abx after that? I hope so, so he doesn't slide back. Is he doing the rocephin just this last month?
Posted by Allie (Member # 10778) on :
I'm 5 weeks in and I've had a nice, gradual decrease in my neuro symptoms -- stabbing, burning, twitching.
The side effects of the drug have been difficult (nausea/fatigue), but I'm plugging along. They have improved, though.
I'm getting nervous, though, because my liver function tests are starting to get messed up.
My liver has been fine on all the other bazillion abx I've taken, so, yes, this one is tough on the ol' system.
But I think it is a GREAT drug for Lyme!
Allie
Posted by Rumigirl (Member # 15091) on :
Thank you, guys, this is helpful. I presume that everyone had it covered by insurance, other than one person I heard from privately. Do you feel it would have been worth it, if you had had to pay out-of-pocket?? Tough one, I know.
And were most of you doing it daily without doing rocephin simultaneously? My LLMD rx'd them simultaneously. But I can't
imagine that I could tolerate that. I couldn't even tolerate rocephin daily---only 4-5 days per week after the first month, due to nausea.
Posted by Rumigirl (Member # 15091) on :
Up again.
Posted by dmc (Member # 5102) on :
Allie, wonderful news. So glad the side-effects fading. By the 8th week you'll forget about them. (I hope for ya)
Posted by sickpuppy (Member # 23846) on :
Rumigirl do you have insurance? and consequently have no way around paying out of pocket?
My LLMD was talking about tigecycline in general and said it was the most powerful abx for lyme. He also said he knew of an ID doc who would administer it and that therefore insurance covered it. How he found such an ID doc I will never know.
If it were me, I would try it. You're worth it!
Posted by Rumigirl (Member # 15091) on :
sickpuppy, I DO have insurance, but, they paid for 2 months of ceftriaxone last year, and then denied any further IV tx. I appealed it all the way through 3 Levels of Appeals, went through the State Attny General, and the State Insurance Board---all to no avail.
But, I got another blasted tick bite last summer, and got Bell's Palsy---can you believe--sick on top of sick! So they gave me
2 more months, then denied it again. So I'm on my own now for coverage. Thanks to the IDSA. And I still have the Bell's Palsy (not horribly noticeable, but it's there).
Please PM me about the ID doctor and/or who your LLMD is. Hmmm. But with Oxford, well they are really tough.
[ 03-12-2010, 12:53 PM: Message edited by: Rumigirl ]
Posted by Rumigirl (Member # 15091) on :
And Oxford's policy as of last August is that they only cover one month! And their month is 28 days!! No exceptions. And they only cover ceftriaxone and maybe doxy IV.