Pulsing valcyte??

[heapsreal]

Awhile ago there was mention of people using very low doses of valcyte like 1/2 pill a day, it was also mentioned that they arent meant to be cut either. Another thing mentioned was using it in an intermittent fashion and i think someone was using it twice a week as they were having bad die off reactions. I also understand that there maybe a possible resistance but think this is alot more common in antibiotics. SO anyone who has used this method can u teel me if this has helped??

Now i have been on valcyte for a few weeks at 1 tab in the morning and famvir at night. Its now long enough to realise im having some type of reaction or die off etc as i feel like crap, worse then my recent cfs symptoms and feeling depressed which isnt normally a problem for me, everything seems so much harder. So to test this theory out, today i missed my valcyte dose and took famvir instead and i had a much better day with all my symptoms improved. Tomorrow i will take valcyte again and see what happens. Im not sure if these increases in symptoms/die off are helping me in the long run or not or that valcyte just doesnt agree with me?? just dont know. So depending what i find in the next few experiment i may alternatevalcyte dosages and continue famvir daily.

Would like to know others experiences and opinions.

cheers!!!

 

[TheMoonIsBlue]

Hi Heaps, I don't have any first hand experience on "pulsing" valcyte, but I do know I have read about a few people in the past who took Valcyte every other day. This was, I believe, due to their liver enzymes being elevated. I would think that resistance would be more of a problem if you take too low of a dose on a daily basis.....but I am no doctor

Valcyte definitely can cause you to feel depressed, just an FYI. It really is impossible to tell if it is "die off" or the drug itself, that's the problem with everything, isn't it? I'm not sure "die off" would happen so quickly, frankly, but..... it can have "psychiatric" side effects I do know that.

Valcyte is definitely a big gun compared to Famvir so you just have to watch out, it has a lot more side effects

 

[heapsreal]

Hi Heaps, I don't have any first hand experience on "pulsing" valcyte, but I do know I have read about a few people in the past who took Valcyte every other day. This was, I believe, due to their liver enzymes being elevated. I would think that resistance would be more of a problem if you take too low of a dose on a daily basis.....but I am no doctor

Valcyte definitely can cause you to feel depressed, just an FYI. It really is impossible to tell if it is "die off" or the drug itself, that's the problem with everything, isn't it? I'm not sure "die off" would happen so quickly, frankly, but..... it can have "psychiatric" side effects I do know that.

Valcyte is definitely a big gun compared to Famvir so you just have to watch out, it has a lot more side effects

Thanks moon, thats some reassurance for me, im considering dosing every second day for awhile to see how it go's, but hard to find any info on the subject. Yesterday after having a day off valcyte i took a dose and had increased symptoms but not as bad as being on valcyte for a few days, so its bearable. So i think the every second day is a good option for me, plus being on famvir will also help supress CMV enough to allow valcyte to do its work when i take it, i hope.

I wonder if die off symptoms with valcyte are different for people with cmv versus hhv6 or those that have both??

cheers!!!

 

[SOC]

First, my Valcyte comes with big warnings not to handle broken pills -- like it's a serious danger. I wouldn't try the 1/2 pill thing. You can try looking it up at the manufacturer's site and see if it says anything.

I've heard it suggested (and it seemed reasonable to me based on my experience with Valcyte) that the reaction is more like an IRIS-type reaction than a die-off. Valcyte doesn't kill; it stops viral replication. So you're not likely to be having a rxn to a sudden die-off of an infectious agent. OTOH, I doubt you'd be seeing much of an IRIS reaction so quickly on a low dose of Valcyte, but I'm no expert.

Daughter and I didn't have any depression issues with Valcyte, but I did with a recent generic of trazodone -- really bad.... really, really bad. If you're taken a generic that hasn't been certified, you could be reacting to something about it, I suppose....

 

[heapsreal]

i understand the concept that avs dont kill viruses, its just a common easy explanation i guess. I did read somewhere that avs stop the virus getting into the cells to replicate, so more of the virus running around our system causing problems and we have to wait for them to die out or so the theory go's and then the iris syndrome theory too, theres a few concepts but i suppose what is important to find away to avoid these increased symptoms, reducing dosages and frequency is all we have at the moment unless anyone knows more??? I wont be cutting pills just reducing frequency at this stage. cheers!!!

 

[donnawhit]

Hi Heaps,

Was just searching for info on this very thing... Can you tell me how you are doing with pulsing the Valcyte ??? Any good response? Thanks

Donna

 

[heapsreal]

Hi Heaps,

Was just searching for info on this very thing... Can you tell me how you are doing with pulsing the Valcyte ??? Any good response? Thanks

Donna

I suppose i didnt really pulse but just took a break for a day or 2 as the valcyte was really knocking me. I started valcyte a few times but always ended up feeling really bad. Eventually i started valcyte again at just 1 pill and never really had any severe ill feeling(die off) from it, buy i put this down to treating a couple of existing issues first. My sinuses were bad as were my adrenal hormones, so i had these things treated before i started on the valcyte when die off wasnt really an issue. I did find taking a day off here and there wasnt really an issue so if one is struggling with valcyte, i think it can help give one some respite, eventually valcyte becomes much easier to tolerate. Alot of people also started on 2 tabs twice a day for a fortnight then to 2 tabs once a day, some of the cfs gurus are finding just starting at 1 tab a day is fine and try to work up to 2 tabs a day. I hope this helps.

cheers!!

 

[Sushi]

i understand the concept that avs dont kill viruses, its just a common easy explanation i guess. I did read somewhere that avs stop the virus getting into the cells to replicate, so more of the virus running around our system causing problems and we have to wait for them to die out or so the theory go's and then the iris syndrome theory too, theres a few concepts but i suppose what is important to find away to avoid these increased symptoms, reducing dosages and frequency is all we have at the moment unless anyone knows more??? I wont be cutting pills just reducing frequency at this stage. cheers!!!

And then there is the Nexavir--GcMAF combo. Nexavir does something like (pardon layman's understanding ) strengthen the cell walls so the buggers can't get in, then GcMAF may be able to zap them while they are running for cover.

Sushi

 

[heapsreal]

I cant get nexavir and maf but use immunovir which i hope gets the buggers when they are running away trying to hide??

 

[m1she11e]

Heaps,

As I have said, my doc is all for the cutting of the pills (read why this is so dang dangerous and tell me if that is an issue for you, the person swallowing the thing...) and he also all for the pulsing. He says that you back off until you feel better and go at it again. Very small doses. I am seeing this more and more. I think it is an easier ride and the out come is better when you get to the other side.

Of course I am still afraid of the stuff but if I were to take it, that is how I would go about it. There is more info on that around here some place. Some one who sees Montoya was told to cut the pills in half and pulse.


Cheers my friend!

 

[heapsreal]

Heaps,

As I have said, my doc is all for the cutting of the pills (read why this is so dang dangerous and tell me if that is an issue for you, the person swallowing the thing...) and he also all for the pulsing. He says that you back off until you feel better and go at it again. Very small doses. I am seeing this more and more. I think it is an easier ride and the out come is better when you get to the other side.

Of course I am still afraid of the stuff but if I were to take it, that is how I would go about it. There is more info on that around here some place. Some one who sees Montoya was told to cut the pills in half and pulse.


Cheers my friend!

Agree mishelle, i initially felt so bad that having cfs/me was alot better, but i knew long term it would help and pulsing etc helped make it alot more bearable.
Cutting the pills cant be any worse then swallowing the buggers too ??

 

[RUkiddingME]

Has anyone ever pulse Valcyte one month on one off? I have been off Valcyte since February and I'm getting all my old symptoms back. I had been on it for three years with a 4 month break. When I first start it I have increased energy at the beginning then I get much much worse for about 8 weeks before the magic starts. Maybe if I pulsed I could avoid the two month crash? This is if I can convince my doc to put me back on it

 

[heapsreal]

Has anyone ever pulse Valcyte one month on one off? I have been off Valcyte since February and I'm getting all my old symptoms back. I had been on it for three years with a 4 month break. When I first start it I have increased energy at the beginning then I get much much worse for about 8 weeks before the magic starts. Maybe if I pulsed I could avoid the two month crash? This is if I can convince my doc to put me back on it

I have done something similar. as u say it takes awhile for the magic to start the first time using it. on return courses i found i responded quickly, maybe viral load is less compared to initial treatment.

I did courses of 2 to 4 weeks when feeling bad plus stayed on famvir inbetween. now i dont require valcyte but stay on famvir which seems to be enough.

Id say its worth a try, only one way to find out.