Topic: Always afraid to start new protocol.. How did you do on FACTIVE?
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I'm always afraid to start a new protocol... I get anxiety - not that it'll make me worse (okay, maybe some of the anxiety is becauseof that, but I'm used to feeling bad), but that it'll make my heart symptoms worse. I have pretty bad heart symptoms including low blood pressure, chronic tachycardia, and palpitations. And I am always afraid to take anything that might make those symptoms worse as my heart symptoms are the one thing that gives me really bad depression and fear.
I'm supposed to start Factive today! I've never been on it before. I know I have to watch out for tendon problems... I'm not worried about that. I'm just worried about how it'll make me feel or if it'll cause more heart problems, etc.
How did you all do with Factive??? I'd like to hear about some of your experiences with it.
I am supposed to pulse it with Tindamax. Factive for 7 days and then Tindamax for 7 days.
Anyway, would love to hear your experiences with it and how Factive was for you. Which symptoms did it help and which symptoms did it make worse, etc.?
Thanks!
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
| IP: Logged |
posted
Factive is fine for me. I believe it has reduced some of my CNS symptoms and increased my general energy. I am personally afraid to start Tindamax!!! Kris
Posts: 520 | From Maryland | Registered: Jan 2007
| IP: Logged |
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Thanks, Joysie. I'm afraid to start any new protocol!!!! LOL.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
| IP: Logged |
I recently began Tindamax and it was brutal for me. I am supposed to be taking it on my weeks off from Factive. The first week as bad but tolerable.
The 2nd week knocked me down pretty hard and I'm not over it yet more than a week since my last dose. If I take it again, I'll do a baby dose but may shelve it for now.
I think it was working, but too well!
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
| IP: Logged |
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Wonko, I am so glad to hear Factive was so great for you. I really hope it helps me as well. I do think Bartonella or Bartonella-like is a big issue for me...
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I felt better on Factive. Unfortunately my insurance will not pay for it.
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Yeah, unfortunately Factive is really expensive. I only got 14 pills and that was $25!!!!
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
| IP: Logged |
merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
factive did absolutely nothing to me
Posts: 3905 | From USA | Registered: May 2007
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I'm into my second pulse of 5 days on Factive and 5 days off. When I first started it, I had slid downhill terribly due to having to go off all abx, because of one problem after another. The Factive right away helped with the neuro sxs; my balance was better, etc. And I didn't have much of a herx.
Now it's harder to tell, because I am still getting over a brutal herx from Coartem. But the Factive seems fine so far, and it has helped.
Oh, and I paid $50 (co-pay!) for 20 pills.
Posts: 3748 | From around | Registered: Mar 2008
| IP: Logged |
posted
What other meds have worked well for you? I seem to respond most to (what I think are) Bart meds. I've been pulsing zith for a long time and still feel that it's working on me.
I was on Bactrim and had a huge response, but had to stop because I was Herxing non-stop. Same thing happened with plaquenil.
I've also been on mino for a long time, but feel it's done far less for me.
Of course it may do nothing or it may be too much for you, but I hope you have similar success with Factive. It is was got me well enough to resume full time work. It got me past the worst of the fatigue and really improved my quality of life.
And yes, my copay is also $50! As I wrote before on another thread, the way my insurance works is it's $50 per Factive Rx regardless of how many pills are in the Rx. So I ask my LLMD to write out the Rx in bigger amounts. I've been getting 30 pills per refill, so it's not too bad.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
| IP: Logged |
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Wonko, I cannot be on Zith because my stomach doesn't agree with it. But when I was on it, I did feel better overall. Bactrim I did like, but it made me herx BIG time (like you said also)!!!! Plaquenil I was on for a while and didn't notice any herx with it or anything.
Mino I've been on for a really long time and don't like it. I don't think it really does anything for me. It did in the beginning, but the thing it caused me was severe neck pain. Before I was ever on it, I never had a stiff neck or the pain it gave me after I started taking Mino. And ever since Mino, I've had neck pain constantly. The Mino obviously did SOMETHING to cause the neck pain.... moved the bugs around or something. But that's the reason for my hating Mino so much.
Wow, Wonko, I am really going to have to do that too. Tell my doc to fill the prescription with a bigger amount of pills.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
| IP: Logged |
I know we're neighbors, perhaps we're seeing the same doc given the similar trajectory of out treatments?
Plaquenil caused me to have a lot of night sweats that I don't get on other meds or off treatment. I'm sure I have Lyme and Bart (or Bart-like), but my doc thinks I may have babs too, though I tested neg for that.
I'm thinking of backing off Mino. Though I feel like it doesn't do anything, I've been hesitant to stop "just in case" but I've been on it for nearly a year now and haven't noticed Herx's from it for about 1/2 that time...
Good luck.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
| IP: Logged |
Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
Factive was a wonder drug for me. Put me on the course to recovery. I was on it for 3 months, then pulsed 14 days a month for quite some time after that. If you are coinfected with bart or myco I highly recommend it.
-------------------- Mathias Posts: 1242 | From New Jersey | Registered: Feb 2004
| IP: Logged |
posted
I took factive for a long time and it wasn't a big deal. It didn't really do too much for me, but I have much worse babs and lyme sx than I do bart.
I don't think I actually even herxed on it; if I did, it was nothing to remember! Posts: 215 | From Student | Registered: Oct 2007
| IP: Logged |
posted
Is factive really newer than Levaquin? I didn't know that. Would love any feedback because I am supposed to start Levaquin shortly.
Posts: 770 | From USA | Registered: Jul 2006
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
So Factive is more expensive than Levaquin? Levaquin is so expensive even after my insurance. $50 for 30?
Mathais, what dosage did you start? Did you increase along the way?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6444 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
![[Smile]](smile.gif)
Printer-friendly view of this topic