My LLMD had me on 25mg every 12 hours (i.e. 50mgs day) and even though I am struggling with it-she wants to bump me up to 50mgs every 12 hours (100mgs a day).
Needless to say I am pretty nervous to move the dosing up that much. Is this the normal dosage for it? I have to take benedryl before each infusion, eat a full meal an hour before and eat throughout the day. In addition I am taking zofran for the nausea.
Anyone who is taking this that has suggestion for helping the fatigue and nausea please let me know. And how much is a full dose?
Thanks, Lindsay
Posted by Lymeorsomething (Member # 16359) on :
Smiles, I don't know but please let us know if you make progress as the drug has been highly touted in some circles.
Posted by Rumigirl (Member # 15091) on :
50 mg every 12 hours is the regular dosage. However, some drs have people pulse it instead of every day, ie, M, W, F, or something like that. It's apparently a tough one to tolerate, but people make good progress on it. I would love to do it, but would have to pay totally out of pocket---more than $5,000 a month!!
Posted by smiles132002 (Member # 7949) on :
i have been on it since last Friday so 8 days today. But I've only been on 25mg 2 times a day. It's been REALLY tough to handle. Not just the nausea but the general fatigue. It also seems to be hitting the parts that I have always feared have the lyme in them (like my knee). I guess it's working but last night i went to bed at 4:30pm and didn't wake up until this morning at 9.
Guess I will just need to push through it..I'll keep you all posted!
Posted by CD57 (Member # 11749) on :
I pulsed it MWF 2 weeks on, 2 weeks off....50 x2 a day when I could handle it. The nausea was hideous (like chemo, not kidding) but tapered off after awhile.
It knocked the &*( out of something!
Posted by smiles132002 (Member # 7949) on :
so are you well? better? okay? was it worth all the chemo like feeling?
Posted by dmc (Member # 5102) on :
smiles it is worth every drop. I'd do it again in a heartbeat. Did 4 months, 50mg 2Xday.
Posted by Haley (Member # 22008) on :
4 months 50 mg 2xday ?!!!!!
This is my 7th day on it (50mg 2xday) and I'm wondering how I will make it through the 2nd week. The first 2 days I was fine the 3rd day the nausea started. I also have the runs. My doc gave me something called promethizine(sp)for the nausea. That drug makes me really tired.
After this experience I would say that ramping up slowly is a good idea. I know some docs don't agree with doing it that way.
For those who have had good results with this medicine. How long did it take to see results?
Posted by smiles132002 (Member # 7949) on :
I am right there with you haley..4 months!!!!!!! I have been on it for a week at 1/2 dose and just added another 25mg tonight so tomorrow will be my first day of 100mgs.
Does it get easier or is the entire month going to be this miserable?
Posted by dmc (Member # 5102) on :
It gets easier...first week was in bed alot. I was not on any nausea med. Just sipped ginger- ale & crackers. After 1 month, nausea only came once in awhile.
By the 3rd month I was eating while infusing, no problems w/any stomacx issues.
I took acidopholis/probiotics every time I went in kitchen. I took the "cheaper" brand from Swanson's vitamin (non-refriggerated)since one doesn't feel guilty taking so much.
A past president of ILADS told me that sometimes cheaper is better since you'd take more and more often.
I never got diareahea while on the Tigecyl.
Would have done more months but got a blood clot outside line so had to pull PICC.
Did amox after...not that I needed to but for "piece of mind".
Been off abxs since 4/09 but added 3.0mg LDN in Sept.09
BTW I was told MS in 1988 (yes, 88) found out lyme in 2003.
Posted by smiles132002 (Member # 7949) on :
wow, was this your first time on IV?
I did IV rocephin in 2006 for 15 months. 2 grams a day/5 days a week. My numbers all improved my CD57 was up to 106 and I was feeling great. After 6 months of orals after IV I stopped all abx and within 6 months I was no longer functioning.
After 9 months of orals I decided to go for IV again. My CD57 is only 32 and my C4a is 34,000, so I am hoping to make BIG improvements. I started with a month of Rocephin and Levaquin but rocephin just wasn't doing enough so I decided to go for the tiger. I am hoping that with only a month or maybe 2 of tiger I will be fine.
Very encouraging to hear your success.
Posted by Hopeful2010 (Member # 22958) on :
DMC -
Would you say that the Tigecyl was a big part of your getting well? What is LDN?
Anyone else on success with Tigecyl?
smiles - you say you were on 15 months of IV Rocephin. Did you lose all the benefits that you had gained or do you think you made some progress. Why do you think you relapsed? Just curious.
I ask this question because I also feel better when I am on Rocephin but it seems like many people relapse on this drug so I wonder if it even helps. Did you take Flagyl when you were on it?
Posted by Tracy9 (Member # 7521) on :
I have tried IV Rocephin and Claforan and cannot take cephalosporins, allergic. I am about to see LLD, who doesn't use Zith (does not believe it is absorbed any better IV than orally.) I need info on what to do next! I know he will have his own ideas, but my regular LLD who does everything BUT the IV wants me to ask for Tigecycline or Vancomycin.
I am so reluctant to ask for Tigecycline because I am ALREADy totally bedridden and just don't want to make things worse....and Vanco to me is the last chance drug.
Has anyone had any good results with Doxy? Or can you suggest anything else? I feel at a loss...I am starting IVIG around the same time, also, which is what I think is really going to turn me around.
Posted by smiles132002 (Member # 7949) on :
hope-I think my relapse was due to a few different things. I had just started a new job which increased my stress level. I had bartenella and didn't know it (bc I never tested positive) and my thyriod was about 20 times the normal rate.
When you have active co-infections, even if you control the lyme they will make you relapse every time. Within 6 months off abx was actually worse off then the first time round. It's not that rocephin was ineffective, it's that it doesn't kill bart or babs. Since I had no clue I had bart we never treated. In June of this year I did the fry test and came up positive and rifamphin, mino, plaqunil, and alinia was my course of treatment and I benefited hugely from that combo.
Yes, I took both mepron, malarone, and flagyl while on Rocephin. I also took mino, zith, and septra. Not all at the same time, we switched every 3 months or so.
Posted by Hopeful2010 (Member # 22958) on :
Smiles
I know we are getting off topic but how long were you rifampin,mino ,plaq and alinia.