I've been considering this drug for Bart since the ILADs conference last fall.
I would love any input as to how it has worked (or not).
thank you!
Posted by BoxerMom (Member # 25251) on :
It is a fluoroquinolone, like Levaquin and Cipro. I took it for 5 days last November and ruptured my Achilles tendon. (Side effect of the drug.) I had previously taken Cipro with no problems. I know two Lymies who developed tendonitis, one on Factive, the other on Levaquin.
I did herx, so it was working, but not worth the rehab I'm doing for my tendon.
Posted by Rumigirl (Member # 15091) on :
I used it for two 5 day cycles in Nov/Dec. It helped my neuro sxs miraculously. HOWEVER, I began seeing double on my fourth day on it!! And that continued on and off ever since. I've read that that effect may be from the effect on the tendons/ligaments of the eyes.
Plus, I got bad tendon/ligament problems on my thumbs, which hasn't gone away. I know someone else who also got tendon problems from it.
So, a double-edged sword to say the least. Supposedly, it doesn't have the same tendon problems as the other quinolones, but that info was from the company (and therefore unreliable).
Posted by mojo (Member # 9309) on :
Wow, so more tendon issues than originally though. Bummer! I can't do Rifampin because it spiked my liver enzymes through the roof and I need to hit it hard.
Right now I'm rifing and "cleaning up" a bit - trying to figure out my next "attack"
Posted by Ivy (Member # 18365) on :
Unable to take Rifampin, Bactrim and Levaquin for Bart - I have been on Factive since January. I started with 1/2 per day for 2 months. Now I am on a full pill daily.
I am having good luck with it so far.
I read on the package insert that steroid use increases tendon problems.
Posted by mojo (Member # 9309) on :
So you aren't pulsing it? Interesting.
Thanks so much for the input. Glad it is working for you.
Posted by BoxerMom (Member # 25251) on :
I should add that all of the Lymies I mentioned who developed tendon issues are chronic cases, 15+ years undiagnosed. I think we are more compromised that the acute cases.
I've never been on steroids.
I have read speculation that it's a combination of poor circulation to tendons and Mg deficiency that contribute to the tendon problems. That would make sense for us. Of course, it's only speculation.
Posted by mojo (Member # 9309) on :
I am definately chronic 15 + years.
My arms and hands fall asleep easily - so i may have poor circulation but I've been doing light weight work and I think my circulation is improving.
I take Mg so that may help make the decision. Thanks again.
Posted by merrygirl (Member # 12041) on :
pulsed 5 days a month. noticed nothing. no side effects nothing positive
Posted by mojo (Member # 9309) on :
Thanks, Merry. Sorry it didn't work for you.
Posted by merrygirl (Member # 12041) on :
thats ok thanks. I hope it works for you!!
Posted by mojo (Member # 9309) on :
Thank you! I hope I can get my Dr. to give it to me!
Posted by Starch (Member # 16205) on :
I've had chronic lyme for 2 years and just went on Factive for the first time. 1 pill once a day for five days and had to stop because both ankles felt really tight and burning.
My Doc took me off and has instructed me to wait for my ankles to get better (they started feeling better as soon as I stopped the drug but still bother me a week later). From there he wants me to get on low doses of Cipro and ramp up over a month or so.
Other than my ankles I felt great of Factive. Fog went away as did most other symptoms. Total bummer that it brought on some scary side effects.
So something to think about when weighing Factive against other alternatives.
Posted by sammy (Member # 13952) on :
It helps, I take Factive daily. When I stop taking it my neurological symptoms increase and my GI symptoms flare.
I tried Avelox but didn't tolerate it well. It made me feel sicker all the time and irritated my stomach. I've taken Cipro in the past and tolerated it well though.
I'm just telling you this so that you can know that even if you don't tolerate Factive well, don't be afraid to try another drug in the same class (Cipro, Levaquin, Avelox).
Posted by joysie (Member # 11063) on :
I took Factive for three months daily. No side effects and it was helpful with neuro symptoms. Kris
Posted by Wonko (Member # 18318) on :
I've posted before on threads about Factive.
For me, it was my "turn the corner" medication. I finally made real, lasting improvement with Factive. Shortly after my experience taking Factive, I was able to resume full time work.
At first I took it one week on, one week off. After I reported to my LLMD how well it was going, with no tendon issues, I then did a month straight on it.
I'm no longer taking it, my LLMD has moved me on to other medications. But I was very happy with this Rx and am glad it was able to help me improve.
Posted by blinkie (Member # 14470) on :
wonko-that is great news. Did you test positive for bart?