That's good to know. I will start slow then.
Any ideas how they are ramping up now? I haven't seen anything on this lately on the web anywhere.
Yes, please do share the dosage if you can find it.
We worked up to 1350 mg (3 450mg caplets) over time. I don't remember how long, though.
It is advised that you don't break them (make sure you read the safety info that comes with it), so I think we increased 1 pill per week
as long as we were tolerating it. We ended up taking 2 in the morning and 1 in the evening.
Please make sure you get frequent tests to check for neutropenia and liver problems -- no less than once every 6 weeks. I was told that those dangerous side effects are reversible if you catch them quickly.
I was able to get my insurance to approve the Famvir but they will only pay for 500 mg twice a day (I had been taking it 3x/day). So my options are:
1. Take Famvir alone twice a day.
2. Take Famvir alone three times a day and just buy the additional tablets as required.
3. Take Famvir twice a day and add in Valcyte (what dose?).
4. Take only Valcyte.
Now I'm stumped and can't figure out what is the best course of action...maybe I'm overthinking it and should just give the Valcyte a try and see what happens. If I do it now, I can always switch back to Famvir and have a two month supply left to try to fight with my insurance company over their stupid quantity limits.
Has anyone ever appealed a quantity limit successfully? I don't even know where to begin as far as I know there is no literature supporting these doses to use as objective evidence for the dose.
Ema
If you don't have a chronic HHV-6 or CMV infection, I wouldn't mess with Valcyte. It's a serious medication with serious potential side effects. OTOH, if you do have one of those infections, it's the only known treatment, so worth trying.
Some docs are finding good effect with Famvir over a long time, even with HHV-6 and CMV (if they're not really severe infections, I think). So Famvir could easily be a good option for you. I think they add immune modulators along with the Famvir, which makes a lot of sense to me.
Another thing to consider is that if you have a neurological infection, you need to get the med through the brain-blood barrier, which is not easy. High doses are sometimes used, so that even if only a small fraction of med gets through, it's enough to do some good. My
guess is that immune modulators improving immune function also help to get at neurological infection by the immune system's natural methods.
If I was starting over today, I would consider starting Famvir plus one of Imunovir or AHCC and an HHV-6 transfer factor product like this
https://www.prohealth.com/shop/product.cfm/product__code/PH172. I would then add or change to Valcyte after a year or so if I didn't seem to making headway with my HHV-6 infection. I suspect it would reduce the nasty period some people experience with Valcyte. Just a guess, though.
There's no easy answer, sadly. Valcyte was huge for both my daughter and I. We both had substantial HHV-6 infections, so that's not surprise. I'd take it again in a flash if our HHV-6 reactivated. and the doc suggested taking Valcyte again. That doesn't mean it's the best answer for everyone, of course.