Valcyte - How long have you been / were you on it?

[ArgyrosfeniX]

Hi Everyone!

About 3 years ago, I was able to convince my Internist to let me try a 6 month round of Valcyte.
After an initial 6 weeks on this treatment, I started feeling much better - ranging 8-9 on the scale.
After the 6 months was over, I stopped taking the Valcyte and was in remission for about 18 months
before I crashed (hard) and have been deteriorating since then.

I have been considering restarting the Valcyte and have noticed that many of the posts about the drug
here on the site are for greater periods that just 6 months. So my question/s to the general PR membership:

How long have you been taking Valcyte for?

(or)

How long did you take Valcyte for and how long did the effects last?

Thanks!

 

[heapsreal]

Hi Everyone!

About 3 years ago, I was able to convince my Internist to let me try a 6 month round of Valcyte.
After an initial 6 weeks on this treatment, I started feeling much better - ranging 8-9 on the scale.
After the 6 months was over, I stopped taking the Valcyte and was in remission for about 18 months
before I crashed (hard) and have been deteriorating since then.

I have been considering restarting the Valcyte and have noticed that many of the posts about the drug
here on the site are for greater periods that just 6 months. So my question/s to the general PR membership:

How long have you been taking Valcyte for?

(or)

How long did you take Valcyte for and how long did the effects last?

Thanks!

I havent used valcyte yet, but many use it for 6 months or longer and then change over to valtrex or famvir which arent as toxic and can help keep viruses supressed after valcyte has done its job. Im sure others will post there experiences. But it sounds promising that valcyte worked so well for you before.

good luck,
cheers!!!

 

[Ocean]

Do you know what made you crash after your remission? It's great the valcyte was so helpful for you, I hope it will be again if you try it once more.

 

[Babs41]

I was on Valcyte for a year and had significant improvement after discontinuing it (felt really horrible while taking it) and was recently considering taking it again. I too relapsed only because we made two major moves in under a year and it proved too much. The improvement lasted for two years.

 

[Daffodil]

i was on it 3 yrs with valtrex too....didnt help much....but i am trying it again now. i never had very high titres to EBV or HHV6

 

[ArgyrosfeniX]

Do you know what made you crash after your remission? It's great the valcyte was so helpful for you, I hope it will be again if you try it once more.

I'm pretty sure that I was over extending myself, trying to act and do things like a normal person. It was a few days after a strenuous physical event that I crashed (I did pretty good for a sick person too!)

I was on Valcyte for a year and had significant improvement after discontinuing it (felt really horrible while taking it) and was recently considering taking it again. I too relapsed only because we made two major moves in under a year and it proved too much. The improvement lasted for two years.

Sorry to hear of your relapse Babs. I know I was crushed emotionally by mine... Let me know if you start taking it again, we could support each other if we start about the same time!

i was on it 3 yrs with valtrex too....didnt help much....but i am trying it again now. i never had very high titres to EBV or HHV6

Were you on the Valcyte first, then went to Valtrex like heapsreal suggests? Or did you take them at the same time?
I've never "tested positive" for any of the viruses that my doctors have looked at - was able to get the Valcyte by assuring my Internist that mine had started with a viral infection.

I havent used valcyte yet, but many use it for 6 months or longer and then change over to valtrex or famvir which arent as toxic and can help keep viruses supressed after valcyte has done its job. Im sure others will post there experiences. But it sounds promising that valcyte worked so well for you before.

That is an awesome idea to use the Valtrex afterward to keep a maintenance (less toxic) medication going after the Valcyte. I'm pretty sure I'll be considering doing that after my next probable regimen of Valcyte.


I read in one of the other threads on the site that someone was recommending taking for more than 2 years to help eliminate as much as possible due to the life cycle of many human cells being about that long. Any thoughts on that anyone?

 

[Babs41]

Valcyte

Sure, I'll let you know when I start again! I tried Valtrex, Famvir and acyclovir but they didn't do anything for me. The Valcyte really corrected my sleep, cogintive and energy issues so it was disappointing to relpase. However, having this illness for more than twenty years, I take the relapses with a grain of salt and just deal the best I can.

I am currently using low dose Naltrexone, which I mostly wanted for my sleep issues. It seems to be improving my immune system; but not the sleep! Keep us updated if you decide to do the valcyte.

 

[Xandoff]

Hi Argyrosfenix,


I have been on Valcyte for 14 months after testing positive for XMRV and for all the sub-viruses. On top of being XMRV positive (sept 2010) I tested positive for HHV-6 ( 3.45), Chlamydia Pneumoniae AB IGM (>1:256), Cytomegalovirus AB IGG CMV IgG (3.1), anemia (on going) High C-Reactive Protein, Vitamin D defiency (29), (in spite of taking 3,000 I.U. a day!) Low DHEA Sulfate (15.0), Mycoplasma Pneumoniae IGG AB (104) Low Testosterone (258) on going, and it suggestive of a past Epstein Barr Virus infection.

My Doc says as long as I am healthy enough (liver and other tests) and he is sure that the Valcyte is not hurting me he will keep prescribing it, the second my levels drop he will take me off it. We added Famcyclovir 500 mg twice a day and I really began to notice a difference in brain function.

I would'nt wish this disease on anyone. I also havve some sort of Chronic Pain Syndrome and pain is the lens I experience life through. I have watched Dr Montoya's video's and people who stay on it longer seem to have better results. I will stay on it as long as my insurance, my Doctor and my body can take it. I had some tough months but all in all I would recommend it to anyone who needs it.

Xandof

 

[Babs41]

Hi Xandoff,

Have you been feeling bad the entire time you are on valcyte or just some of the time? Thanks

Babs

 

[heapsreal]

I have aquired 30 valcyte tabs which i plan to use soon. I spoke with my doc and when i clear this sinus infection with abx, probably 2 weeks and also checking my liver and kidney function i will then persue valcyte. Currently im on famvir 250mg twice a day but the plan will be to take 1 valcyte in the morning and 250mg famvir at night, i know 1 month isnt a long time but depending on how i respond, i will then considered forking out the extra cash to buy more valcyte. Hopefully the famvir has my viral load down enough that 1 months worth of valcyte will see some results.

Even though some of the people posting here have crashed after using and stopping valcyte, it is encouraging for me to see that some of u went into a remission. I think im a good candidate for valcyte as i have had improvement with famvir, maybe need something that little bit stronger.

cheers!!!

 

[AliceZ]

I have been on Valtrex and Valcyte for EBS, CMV and HHV6 for about 16 months now as per Dr. Martin Lerner's regimen. I crashed really badly after starting the regimen. This lasted about 6 or 7 months, but I have been making steady improvement ever since, and am now higher functioning than I was when I began the treatment. I plan on continuing the treatment for the time being, as this is the first time in about 15 years that I am making progress in a positive direction.

 

[SOC]

My daughter is in full remission after 18 months on Valcyte for HHV-6. She still takes Valtrex to keep herpesviruses suppressed. I've been taking Valcyte for 22 months and have made a lot of improvement, but still have a long way to go. I have also been taking Valtrex for about 4 months. Absolutely nothing worked for us like Valcyte has.

 

[Babs41]

Heapsreal,

I hope you do have improvement on the Valcyte and try not to be discouraged by what happens with others, you are a different person! You'll never know if you don't try! Again, I only crashed because of pushing myself very hard. We moved across country from Pennsylvania to Arizona, six weeks after getting to Arizona my mom was diagnosed with pancreatic cancer and could not take care of herslef. My kids and I moved back to PA to take of my mom for two months before she died. Then 6 months later we moved from Arizona to Texas. I would not been able to do that had I not taken the valcyte to begin wih.

My doc had me stop the valcyte after 6 months but started me back on it a few weeks later becaue the HHV6 and EBV were still high. Had I not continued for the year, the improvement may not have happened. Don't be disappointed if you see no results in a month. It may take longer alot longer. By all means while taking it, rest as much as possible. I started feeling better about a week after stopping. I woke up one day refreshed! This continued then I had energy to do things and it kept getting better everyday. I no side effects to speak of other than while taking it I felt bad.

As a side note my relapse is not as bad as previous ones as I'm am functional just not as much as I would like to be. I guess I could describe it as being slowed down alot. You know, I do things but always behind. Dinner can be made but can't do the clean up until morning. Laundry takes 5 days instead of one day. The brain is also slow! I love to read but that is difficult at the moment. It took me the whole summer to read "The Girl with the Dragon Tattoo". Started the second book of the series, read the first page and there the book sits untouched! I still struggle. If I could just fix my sleep!!!! I slept so well after Valcyte. Asleep by 9 pm. up at 6am with no alarm, fresh and ready to go!

We have lost our health insurance which is the reason I have not started the valcyte again. Just can't afford it at the moment. Yeah, the more thought I give to this the more I think I'll contact the drug company and see if I can get it a reduced price. I wonder if anyone has tried that with success?

If you feel up to it, keep us posted! Take care

Babs

 

[heapsreal]

Heapsreal,

I hope you do have improvement on the Valcyte and try not to be discouraged by what happens with others, you are a different person! You'll never know if you don't try! Again, I only crashed because of pushing myself very hard. We moved across country from Pennsylvania to Arizona, six weeks after getting to Arizona my mom was diagnosed with pancreatic cancer and could not take care of herslef. My kids and I moved back to PA to take of my mom for two months before she died. Then 6 months later we moved from Arizona to Texas. I would not been able to do that had I not taken the valcyte to begin wih.

My doc had me stop the valcyte after 6 months but started me back on it a few weeks later becaue the HHV6 and EBV were still high. Had I not continued for the year, the improvement may not have happened. Don't be disappointed if you see no results in a month. It may take longer alot longer. By all means while taking it, rest as much as possible. I started feeling better about a week after stopping. I woke up one day refreshed! This continued then I had energy to do things and it kept getting better everyday. I no side effects to speak of other than while taking it I felt bad.

As a side note my relapse is not as bad as previous ones as I'm am functional just not as much as I would like to be. I guess I could describe it as being slowed down alot. You know, I do things but always behind. Dinner can be made but can't do the clean up until morning. Laundry takes 5 days instead of one day. The brain is also slow! I love to read but that is difficult at the moment. It took me the whole summer to read "The Girl with the Dragon Tattoo". Started the second book of the series, read the first page and there the book sits untouched! I still struggle. If I could just fix my sleep!!!! I slept so well after Valcyte. Asleep by 9 pm. up at 6am with no alarm, fresh and ready to go!

We have lost our health insurance which is the reason I have not started the valcyte again. Just can't afford it at the moment. Yeah, the more thought I give to this the more I think I'll contact the drug company and see if I can get it a reduced price. I wonder if anyone has tried that with success?

If you feel up to it, keep us posted! Take care

Babs

Thanks for the advice,

I have made good improvement with famvir but still struggling and or up and down. My main reason for not trying valcyte earlier was cost as its not covered by insurance or the healthcare system in australia, so its hard to justify the large cost as i suppose its a bit of a gamble if it will work. I am slightly confident it will help as other av's have helped and was lucky to have aquired the valcyte to try, so a try before u buy thing. Resting is going to be the hard part as im still working and if i am to continue using valcyte will need to work to pay for it.

Babs im encouraged by your experience in that u improved alot on valcyte and im under no delusion that i will be on some type of antiviral for alot longer yet, atleast until there is a sure fire way to consistently improve my nk function. I mentioned to my doc today about alternating immunovir monthly with cycloferron, he said that it sounded like a good idea as they both work by different pathways and that our immune system gets tolerant to immune modulators farely quickly. I think fixing our nk dysfunction will be a big part in sustaining progress made from antivirals once we go off them??

cheers!!!

 

[niall]

I took Valcyte for six months in 2009. I experienced a lot of body pain (worse than Imunovir) with no discernible improvement in my health.

 

[ArgyrosfeniX]

I took Valcyte for six months in 2009. I experienced a lot of body pain (worse than Imunovir) with no discernible improvement in my health.

Niall,

Did your ME/CFS start with a viral infection? What made you decide to try the Valcyte?

 

[searcher]

Babs41 - I wasn't able to get valcyte from genentech for free because the doctor who prescribed it is out of my health insurance network. But if you don't have insurance and have a doctor who will prescribe valcyte, I think you will have a good chance of getting it free from genentech through their compassionate care program. It is definitely worth trying.

 

[Babs41]

Heaps,

The NK cell dysfunction is a problem. I wonder if the others who have made improvement have kept track of their NK cell function? Did it improve while on it? Did the improvement continue?

Babs

 

[Babs41]

searcher,

Thanks so much for sharing that chunk of info and saving me time! I am running so low on energy and was not looking forward to doing the research. My doc will prescribe it for me no problem so I will look into it. Were you not able to get the valcyte through your insurance?

 

[heapsreal]

@babs41 - I wasn't able to get valcyte from genentech for free because the doctor who prescribed it is out of my health insurance network. But if you don't have insurance and have a doctor who will prescribe valcyte, I think you will have a good chance of getting it free from genentech through their compassionate care program. It is definitely worth trying.

Thanks for the genentech advice, i have sent them an email. I hope they can do the compassionate grounds program in australia but not holding my breath as australia has some different laws in reguards to medication promotion etc. We will see what happens. There is an online pharmacy i have found that sells generic valcyte for $9.12 a tablet which is still expensive but the best price i have been able to find.

cheers!!!