Typical Valcyte Dosage?

[Ema]

Dr L put me on 1800 mg of Valcyte (900 twice a day) when I started it last fall. I've done fine on that dose from the start, but am wondering if after a year now I should be thinking about reducing my dose down to 1350 or even just 900.

I feel like I've plateaued on Valcyte though it did take care of a lot of my OI/dizziness. I had planned to stay on Valcyte for at least 18-24 months provided that my labs stayed in good shape regardless though.

Any thoughts? Would love to hear what dosages and length of time others used for Valcyte.

Thanks!

 

[zzz]

The normal dose of Valcyte for most people is 900 mg/day, usually in divided doses. I was on Valcyte for five years, and that's what I took almost the whole time - 450 mg with breakfast and 450 mg with dinner. I took the 1800 mg dose for a couple of weeks in the very beginning, and I occasionally took 1350 mg for a couple of weeks at a time, but that was only on the rare occasions where it seemed like more Valcyte would help get me back on track. The extra dose did, and then I could drop back to 900 mg after a week or two.

I haven't heard of 1800 mg used as a maintenance dose (aside from AIDS patients with CMV retinitis), although I would imagine that Dr. L uses it with his other patients as well. Unless Dr. L has you on the higher dose for a specific reason (and it would certainly be good to check), then I would think that if you're doing well with the Valcyte, it would be reasonable to drop down to 1350, and then to 900 if you continue to feel well. The 900 mg/day dose is standard among many CFS doctors. One of the reasons for reducing the dose is the potential toxicity of Valcyte and the higher likelihood of drug side effects arising at the higher dose. This happened to me (I developed temporary peripheral neuropathy); fortunately, I had reached the point where Valcyte had done as much as it was going to do for me.

 

[heapsreal]

I found the effects/improvements for me stopped after about 6 months but i maintained them. i stayed on valcyte for 18months. I stopped due to neutropenia and i should have stopped after 6 months and restarted if i had relapses/reactivations etc?

I started at 450mg and after several months increased it to 900mg once a day for several more months. I than backed down to 450mg once a day. I improved moving the dose up to 900mg and when i went back down to 450mg i didnt notice any difference, probably maintained where i was at.

I will say that i have done a few shorter courses of valcyte(2 weeks) and improvements come around alot quicker than when first starting valcyte. I have done the shorter courses due to neutropenia and used famvir at other times.

I believe @SOC had a similar experience with valcyte the second time around.

I think if you were to stop valcyte and stayed on famvir or something similar, you maintain where you are at for awhile, months or years. But because you responder the first time u used valcyte, im sure a second course you would respond well to also.

 

[SOC]

Dr L put me on 1800 mg of Valcyte (900 twice a day) when I started it last fall. I've done fine on that dose from the start, but am wondering if after a year now I should be thinking about reducing my dose down to 1350 or even just 900.

I feel like I've plateaued on Valcyte though it did take care of a lot of my OI/dizziness. I had planned to stay on Valcyte for at least 18-24 months provided that my labs stayed in good shape regardless though.

Any thoughts? Would love to hear what dosages and length of time others used for Valcyte.

Thanks!

We never got up to 1800 mg daily. Daughter and I both took 1350 mg daily for about 2 years during our first round of Valcyte. We then went 2 years without Valcyte before we both had HHV6 reactivations (to those who don't believe in HHV6 reactivation, I point to increasing titres and significant symptom increase, particularly in the cognitive area). At that point we went back on Valcyte at 900 mg daily. We've been on that dose for almost a year.

We had improvements much more quickly during the second round. I noticed improvements within a month. My guess is that might be because we caught the reactivation relatively early. During both rounds I had large, very clear improvements of my symptoms at the 6 month mark, in addition to smaller improvements earlier and later. I don't know if that 6-month symptom decrease is due to antiviral effects of the medication or its effect on microglia. It could be either, or both, I suppose.

Based on our experience alone, I'd suggest staying on Valcyte 18-24 months if you are tolerating it well. I suspect that the longer you inhibit replication of the virus, the less you have in the reservoirs and the longer it will take to build up to the point where you need to take Valcyte again. That's just a guess, though.

Valcyte has been huge for me. Other treatments have certainly helped, but Valcyte is the one that have given me the biggest improvements in my condition. Five years ago I was bedbound, unable to take care of my activities of daily living, unable to think clearly enough to read a book. Taking a shower was a major effort. My life was laying or sitting in bed and watching the birds through the window. By contrast, I am now working (tutoring) 30 hours a week and am able to walk around the mall all afternoon doing my Christmas shopping. IMO, that's huge.

 

[Gingergrrl]

My life was laying or sitting in bed and watching the birds through the window. By contrast, I am now working (tutoring) 30 hours a week and am able to walk around the mall all afternoon doing my Christmas shopping. IMO, that's huge.

@SOC That it HUGE and I am so incredibly happy for you and your daughter. If I could work 30 hours a week (or even 20 hours) and walk around the mall all day doing my Christmas shopping, I would be so thrilled I would never ask for anything ever again!

It is interesting that you had clear improvements on the anti-viral at the six month point which for me will be at the end of January (although different anti-viral which by current research does not have the microglial effects.) Also that you stayed on it longer which makes sense that it allowed the reservoir of virus to lower. It gives me a lot to think about.

 

[Ema]

I did end up lowering to 1350. We'll see how that goes...

 

[SOC]

@SOC That it HUGE and I am so incredibly happy for you and your daughter. If I could work 30 hours a week (or even 20 hours) and walk around the mall all day doing my Christmas shopping, I would be so thrilled I would never ask for anything ever again!

I feel the same way. I am thrilled. I was to the point of not asking for more earlier in my recovery -- when I could get out of the house on my own even if I needed to use carts and the like. Now that I'm mostly symptom-free and doing a lot of walking around, I'm thrilled beyond belief. I'm not 100% back to my pre-illness condition, but this is so wonderful compared to where I was 5 years ago that I really don't feel like complaining.

I did end up lowering to 1350. We'll see how that goes...

Please keep us posted on how it goes for you.

 

[RUkiddingME]

I feel the same way. I am thrilled. I was to the point of not asking for more earlier in my recovery -- when I could get out of the house on my own even if I needed to use carts and the like. Now that I'm mostly symptom-free and doing a lot of walking around, I'm thrilled beyond belief. I'm not 100% back to my pre-illness condition, but this is so wonderful compared to where I was 5 years ago that I really don't feel like complaining.


Please keep us posted on how it goes for you.

@SOC WOW!!!! I am so happy for you and your daughter! I know you and I were at similar functioning levels for a while but this is a huge improvement for you! Yippee!! I'm on my sixth month of Valcyte round 2 and the magic started happening again at the end of the fourth month and I slowly keep improving. I just had my phone consult with my Doc at OMI and he wants to leave me on Valcyte for another 6 months. I can't wait to shop all afternoon I the Mall. I am confident it will happen for me as well. HIGH five ))

 

[Gingergrrl]

I can't wait to shop all afternoon I the Mall. I am confident it will happen for me as well.

@RUkiddingME Me too, and some day we will all go shopping at the mall together!