Hubby has been on Factive for 4 months now this time around -- took it for a couple of months a year ago.
Was on full dose every day for a month and then 1/2 dose daily for the next month and then back to full dose for the last 2 months but only for 5 days a week.
Doc has not said how long he plans to keep hubby on Factive, but plan is to stay on it at least one more month.
Hubby has had many med changes in the last month. Prior to that he was more achey on the 2 days a week he was off the Factive. Now he really can't tell how he is responding to the med.
But since stopping the Rifampin a month ago his bilirubin is going back up so we are concerned that the bart or BLO or whatever he has may be trying to come back.
Curious as to the longest anyone else has taken Factive.
Bea Seibert
The real irony is that despite the Factive and Rifampin hubby's pulmonary nodules have gotten larger in the last 1 1/2 years. If he has mycoplasma pneumonia (had some questionable test results in the past) then obviously these meds aren't working. He does have an appointment with a pulmonologist in a month -- the first one he has seen in 5 years -- although he has had lung CT's done every 12 or 18 months during that time.
Posted by blinkie (Member # 14470) on :
Bea, I can't answer your question, but...does your hubby have lung symptoms?
Posted by Rumigirl (Member # 15091) on :
Bea, I can't answer your question either. But I just have to say that it's unbelievable what you and your husband have gone through and are going through. And what so many of us are going through!!
It never ceases to amaze me how wrong it seems that the state of TBI tx is what it is (or isn't!). I pray that you both have better results soon.
I was only on Factive a very short time, and it was a miracle med for my neuro sxs, BUT I got bad tendonitis and double vision from it in short order! (This doesn't have any bearing on your situation, however).
Posted by sammy (Member # 13952) on :
I was on Factive for well over a year, full dose daily. I looked back in my notes and I started it in Feb 09 (at least 17mo). Stopped it once to try Avelox (cheaper) but it didn't work as well and it irritated my stomach. Stopped it again Dec 09, replaced it with Biaxin but it didn't work as well so we switched back.
Factive seemed to help keep certain symptoms at bay. When I stopped it, my symptoms came back within 24hrs. Started it again and they went away. That's why we didn't pulse it.
3-4 wks ago we switched to IV Levaquin. It is working well. Hopefully it will cure and not just suppress symptoms.
Posted by seibertneurolyme (Member # 6416) on :
Blinkie -- Hubby has a dry hacking cough -- worse since starting IV Rocephin.
Rumigirl -- For probably the first month or so hubby had mild tendon pain with the Factive, but that went away over time.
Sammy -- The first time hubby tried Factive about a year ago the doc wanted to pulse it 5 days on and 5 days off -- that didn't work out too well. Hubby just had an appointment with a lyme neurologist who mentioned the possibility of IV Levaquin in the future. We will see what the pulmonologist says first. Plan to repeat hubby's bloodslide in a couple of months -- if the unknown bacteria levels are worse then will definitely have to try something else.