valcyte, die off or adverse reaction

[heapsreal]

5 weeks i did on valcyte i had increased symptoms, headaches, fatigue, insomnia and felt really depressed. I wasnt sure if this was some type of die off or IRIS type reaction, maybe it is but after reading up more on valcyte, these symptoms can be adverse reactions to this medication. I am going to talk it over more with my doc first but maybe its a matter of how long we/I can put up with these types of symptoms to get improvement. Shortly after stopping valcyte i did feel slightly better then pre valcyte. I would like to do a full 6 months but if these types of reactions kept going for the entire 6 months i would really be struggling to earn a living, dammed if i do and dammed if i dont. I suppose theres know real way to know i guess??

Testing has showed that famvir has helped lower my viral load and i have improved although platued and gone back abit. If i stop famvir these viral markers go up. I think famvir is helping with the virus(cmv) in the blood which shows in testing but not in the nervous system and brain. Maybe staying on famvir long enough and keep this virus suppressed in the blood, it will eventually die out??? i keep reading dr lerners antiviral experience and some of his patients he has kept on av's for a long time like 5-6 years, so i only really have another 4 years to go, lol???

Im just thinking/typing out loud. What to do, what to do???
http://www.drugs.com/sfx/valcyte-side-effects.html

cheers!!!

 

[jstefl]

Valcyte seems to affect everyone differently. I took Valcyte for 8 Months back in 2008, and had almost no ill effects. I noticed a slight increasein headaches for the first week or so, then began feeling better every week. It took about 4 months before I really noticed a significant improvement.

Looking back, I wish that I had asked my doctor to keep me on Valcyte for at least a year. I feel that there were further improvements to be had in my case. I was fortunate in that I was able to rest during this time.

Trying to work while taking Valcyte may explain some of your difficulties. Did you try taking a break for a day to see if you felt better? I recently started on a generic Valtrex, and began getting bad headaches after three weeks. I have now gone on a two day on, one day off schedule with good results. The one day break seems to allow my system to recover from the ill effects.

I documented my Valcyte experiences on the HHV-6 Foundation site, along with others. Every story seemed different, so my experience will probably be very different from yours. In the end, Valcyte was the best thing that I have taken. It helped me with many of my problems, including my blood pressure and it really helped with my severe headaches. It greatly reduced my brain fog, and made my life much more tolerable. I was able to quit the Midodrine I was taking at the time. My periodontal problems even got better.

Good luck with figuring this out.

John

 

[m1she11e]

Sorry Heaps! This is the million dollar Valclyte question! I hope the other anti virals will be available soon...

 

[SOC]

Gosh heaps, I wish I could help you, but I don't have any answers.

There is no way I could have worked while taking Valcyte. I suspect rest is an important aspect to helping it work most effectively. That said, my daughter stayed in engineering school (with A LOT of physical support, no social life, and lots of rest/naps) through more than a year of Valcyte treatment with no apparent Valcyte side effects. She just kept getting slowly better. So, as others have said, it seems to be different for everyone.

Some things to try if you're not already: (1) silymarin (milk thistle) to support your liver processing the Valcyte, (2) some kind of immune support to help your body kill infected cells as the Valcyte stops replication (3) tryptophan temporarily for sleep and depression symptoms while they last. Also, it was undrcvr, I think, who has suggested shark liver oil to help with possible neutropenia from Valcyte.

Your symptoms sound like those a lot of people have with Valcyte, and may be your immune system kicking back into operation. If so, it seems to pass. So far yours doesn't seem too bad (no consolation at this point, I know ), so hopefully it won't last more than a few weeks.

My "bad patch" with Valcyte lasted a couple of months as I recall, with all the old flu-like symptoms plus a rash and I don't remember what else. It was like a bad relapse. But I felt A LOT better (once it was over) than I did before I started Valcyte. It was well worth it.... but I wasn't trying to work during it.

You are getting liver enzymes tested regularly and are watching for neutropenia, right?

 

[heapsreal]

Thanks for all the replies guys. Maybe i just need to go slower with the dosing eg use every second day with a few extra days off when i need it. Giving up work for awhile just wont happen its something i will have to try and battle through. When depressive symptoms started i added tryptophan at night and 5htp in the morning with minimal effect, maybe i need to start it earlier, but knowing what is causing it now makes it easier to tolerate. Im due for another blood test and i do use stuff to support my liver etc. I have just started ldn hoping it may minimise side effects and pick my mood up but its only 2 days with that. Yes all the valcyte stories are very different and its hard to know how it will effect individual, michelle i remember your valcyte trials as they made u significantly worse.

thanks again,
cheers!!!

 

[taniaaust1]

No answers but hoping that whatever you decide to do will end up being the best decision.

best wishes
tania

 

[chili]

Hi heapsreal, I took Valcyte starting my birthday (December 15) in 2010 and by the second week of January 2011 started to feel worse as well. This worsening continued into February but by mid-March began to feel better and had continued improvement through May. Unfortunately I developed hepatotoxicity and had to stop mid-May of 2011. Rather than a herx reaction, Dr. Peterson believes it is a direct med effect (after all it is clastogenic)

 

[heapsreal]

Hi heapsreal, I took Valcyte starting my birthday (December 15) in 2010 and by the second week of January 2011 started to feel worse as well. This worsening continued into February but by mid-March began to feel better and had continued improvement through May. Unfortunately I developed hepatotoxicity and had to stop mid-May of 2011. Rather than a herx reaction, Dr. Peterson believes it is a direct med effect (after all it is clastogenic)

Thanks for the reply chili, so have you been able to maintain your improvement?

Also thanks tania for the well wishes.

I have started again today on valcyte, just taking one tab a day on a mon wed fri regime, i will stay on famvir 250mg twice a day except for the mornings i take valcyte.
I just want to get better, i get really itchy feet around this time of the year as the australian open tennis is on here and im a mad tennis fan and use to play alot of tennis. I just want to get out and start living life instead of sitting in front of a computer or tv. I want to go to the gym and get myself really fit so i can play again as well as play with my kids and run around like i thought life was going to be like. THe same thing happens when the rugby league season starts but i know im too old for that, even watching the biggest loser show watching people exercise gets me frustrated, im just sick of being a professional sports couch potatoe with a headache who cant sleep, some famous words of john mc enroe aaaarrrrgggghhhhhh!!!!! you cant be serious, now picture me smashing my tennis racket, BANG! just letting off some frustration, that feels alot better.

cheers!!!

 

[consuegra]

Why don't you cut back on the dosage until the side effects/herxi/IRIS stop? Maybe your dosage level is lower than the average or norm? Maybe you are having trouble processing the amount of drug that you are taking? Maybe you will really benefit from a lower dosage?


Chris

 

[heapsreal]

Why don't you cut back on the dosage until the side effects/herxi/IRIS stop? Maybe your dosage level is lower than the average or norm? Maybe you are having trouble processing the amount of drug that you are taking? Maybe you will really benefit from a lower dosage?


Chris

Thanks for the advice. I have read that you arent suppose to cut tablets in half, so im spacing the dosages out more which is the only way i can lower the dose without cutting them. Maybe someone else has more info on valcyte tablets and cutting them??

cheers!!!

 

[SOC]

Thanks for the advice. I have read that you arent suppose to cut tablets in half, so im spacing the dosages out more which is the only way i can lower the dose without cutting them. Maybe someone else has more info on valcyte tablets and cutting them??

cheers!!!

Everything I've seen says DO NOT cut Valcyte tablets or handle broken tablets. As toxic as the stuff is, I wouldn't try cutting them -- and I've been taking the stuff for almost 2 years, so it's not like I'm afraid of the stuff generally.

 

[heapsreal]

Everything I've seen says DO NOT cut Valcyte tablets or handle broken tablets. As toxic as the stuff is, I wouldn't try cutting them -- and I've been taking the stuff for almost 2 years, so it's not like I'm afraid of the stuff generally.

Thanks, it was probably you that has mentioned it before and somehow i remembered just not from who, lol.

A bit of trouble sleeping last night from the valcyte even though i took abit higher dose of sleep meds. Just using valcyte 3 times a week for now, hopefully i get use to the side effects and can slowly increase the dosage frequency.

cheers!!!

 

[m1she11e]

Hi Heaps,

I am the one who was told to cut the Valcyte in half. I know they say not to on the package insert but I think it had more to do with the powder getting on others or in places other than your mouth. My doc has been in contact with Montoya and really believes in the lower dosing and backing off when the "die off" is too much. When I told him about all the talk of the dangers of cutting the pills in half he was baffled at the how the the theory would even make sense. It IS going into our body either way and its not in some time released capsule. He has treated around 700 patients with it now and has many start out this way. Im not saying he knows it all or is a big CFS expert. He DOES like to give out Valcyte like it is candy though. He tests everyone from Diabetics to people with MS for the Herpes virus' and sees improvement in MANY of them with anti-virals. Valcyte appears to be his favorite.

Although I have made it clear that I had a bad experience with Valcyte, my doctor said he has never had to take anyone off of it because of liver enzyme elevation or WBC's dropping too low. For die off he finds that Resveratrol, Vitamin D and Cortef help people the most. He isnt a big supplement pusher either but swears these are the things that actually do help. Backing off and waiting til the die off symptoms improve and resting is big too according to him. He says that the patients that try to push through dont do as well in the long run as those that back off and take it slow.

Thats what my Doc says... Again, just passing on the information.

I sure hope you start feeling better soon Heaps!!

 

[maryb]

Not to do with Valcyte sorry - just I hear you on watching the australian open tennis heaps, so frustrating watching others do what you used to love doing, but wasn't the final an absolute epic, brilliant - took most of Sunday day up for us, and a late night for you if you stayed up.
Good luck on the Valcyte hope it works for you in time.

 

[heapsreal]

Not to do with Valcyte sorry - just I hear you on watching the australian open tennis heaps, so frustrating watching others do what you used to love doing, but wasn't the final an absolute epic, brilliant - took most of Sunday day up for us, and a late night for you if you stayed up.
Good luck on the Valcyte hope it works for you in time.

Hi Marb, i missed the last of the match, i went to bed in the 3rd set, couldnt keep me eyes open, but when i got up in the morning the first thing i did was switch the internet on to check the score. Going by the high lights it was a cracker! I do like these sporting events that last a couple of weeks, gives me something to do lol. Olympics this year, yeah!! Im definately an arm chair athlete now, lol.

cheers!!

 

[heapsreal]

Hi Heaps,

I am the one who was told to cut the Valcyte in half. I know they say not to on the package insert but I think it had more to do with the powder getting on others or in places other than your mouth. My doc has been in contact with Montoya and really believes in the lower dosing and backing off when the "die off" is too much. When I told him about all the talk of the dangers of cutting the pills in half he was baffled at the how the the theory would even make sense. It IS going into our body either way and its not in some time released capsule. He has treated around 700 patients with it now and has many start out this way. Im not saying he knows it all or is a big CFS expert. He DOES like to give out Valcyte like it is candy though. He tests everyone from Diabetics to people with MS for the Herpes virus' and sees improvement in MANY of them with anti-virals. Valcyte appears to be his favorite.

Although I have made it clear that I had a bad experience with Valcyte, my doctor said he has never had to take anyone off of it because of liver enzyme elevation or WBC's dropping too low. For die off he finds that Resveratrol, Vitamin D and Cortef help people the most. He isnt a big supplement pusher either but swears these are the things that actually do help. Backing off and waiting til the die off symptoms improve and resting is big too according to him. He says that the patients that try to push through dont do as well in the long run as those that back off and take it slow.

Thats what my Doc says... Again, just passing on the information.

I sure hope you start feeling better soon Heaps!!

Hi Mish,

Good to hear your docs experience with it, sounds promising. Have you tried using smaller doses??

Im travelling ok on valcyte using it in a mon/wed/fri schedule with famvir on the other days. At that dose my valcyte supply should last a few months. When i see my doc next i will be talking about trying to get some freebies from the valcyte company. After i emailed them they said they could maybe do something to help but need my doc to get in contact with them, sounds promising too. As i start feeling better i would like to try and increase the dose but we will see. I have had a few weeks off work so hopefully working again will on V doesnt make me sick again but i am noticing some improvement, its all trial and error, time will tell.

cheers!!!