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Valcyte (plus) Update

SOC

Senior Member
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valcyte generic 40 tabs $365, cheapest i have seen, any cheaper sources im interested in. No insurance coverage for this med in australia for cfs.
http://www.totaldrugmart.com/drugsearch.asp?strString=Search&txtName=Valgan&submitted=yes
That is cheap. It more typically runs $25-$50 per pill (450mg). It's no wonder many people's insurance companies don't want to pay for more than 3 months (if that).

Valcyte treatment (meds alone) can easily cost upwards of $50,000 (per person per year), so insurance that covers any part of that is a BIG plus. You just have to check with your insurance company to see what they'll cover. A bit of advice: you'll probably have better luck with the insurance company if your doc reports that it's for CMV or HHV6 infection rather than "CFS". It's not documented to be effective for "CFS", so most insurance companies are understandably unwilling to pay for such an expensive med without evidence of efficacy.
 

mojoey

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Oh wow heapsreal. You probably just kept a few people on valcyte (once insurance runs out) Thank you so much for sharing!
 

heapsreal

iherb 10% discount code OPA989,
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Oh wow heapsreal. You probably just kept a few people on valcyte (once insurance runs out) Thank you so much for sharing!
glad i can help, but still priced out of my league for the time being, unless someone wants to buy 2 kids from me, they dont each much, lol.
 
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If you meet their income criteria and don't have insurance coverage for the prescriptions, you may be able to qualify for the medication for free or at a reduced price directly from the manufacturer. You and your doctor need to fill out a bunch of stuff and you have to test positive for the relevant viruses. You can probably get information on the relevant program over the internet.
 

mojoey

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Haha yeah it's still not cheap by any means. The patent doesn't expire til 2015 but i'm keeping my fingers crossed for more international generics to get produced to increase competition and lower the price.
 

heapsreal

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If you meet their income criteria and don't have insurance coverage for the prescriptions, you may be able to qualify for the medication for free or at a reduced price directly from the manufacturer. You and your doctor need to fill out a bunch of stuff and you have to test positive for the relevant viruses. You can probably get information on the relevant program over the internet.
i think its all different for us australians, prescription meds are quite cheap here as they are subsidized by the government but only for what they are indicated for. valcyte is only indicated for cmv eye infections in HIV and organ transplants. For us aussie we are probably going to have to wait for cfs/me to be recognised as an infection/immune disorder b and then we can probably get these meds for $33 a month until then valcyte in australia costs about $15k for 3 months at 900mg a day. to afford that we have to be either rich or able to work lots of overtime, so its only for the rich. Im going to have to look at higher doses of famvir and immune stimulants or win the lotto,lol.

cheers!!!
 
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Valcivir from India US$1 per 1000g Tab

The generic form is available and made by Cipla in India
Price is INR140 for 3 tables 1000mg
That's about US$1 each!
YOu can also get that without a prescripton
I am luck enough to have friends there who got it for me
I have not yet started the protocol
Anyone got advice on how to start
Cheers
 

heapsreal

iherb 10% discount code OPA989,
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The generic form is available and made by Cipla in India
Price is INR140 for 3 tables 1000mg
That's about US$1 each!
YOu can also get that without a prescripton
I am luck enough to have friends there who got it for me
I have not yet started the protocol
Anyone got advice on how to start
Cheers
If u could share a web site for this would be appreciated.

cheers!!!
 

redo

Senior Member
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I tested positive for EBV (EA, VCA and NA) and HHV-6, but CMV was NEG. I say positive on EBV, but my GP tends to discount the levels because they were IgG, instead of IgM and CFS doc at the time says that EBV IgG should never be as high as mine was and all 3 types were positive means reactivation. Do you mind if I ask what types anitbodies(?) you tested positive for (IgG or IgM)?

I took Valcyte for 3 months, but was stopped to try and get thyroid straightened out. I still have about 2 months worth and was thinking about finishing it up. It definitely helped me get through the day after I had been on it for a few weeks.

I understand about the sleep problem too as I actually had trouble with that before I got CFS, but became much worse after that. I was on Klonopin and Ambien, but am now going through a cycle of Xyrem. As tight as it is regulated they didn't have to put so much sodium in it, as it almost makes it not worth taking.
Does the Xyrem help you August59? Makes you fall asleep and stay asleep better than ambien?
 

undcvr

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Have you been looking into food intolerances/sensitivities ? I never tested positive for any but recently when I stopped eating wheat completely, my immune system jumped and i am able to reduce my dose of Valcyte by half. It is a very very big deal. I am thinking about doing the ALCAT test.

Another suggestion is to drink bone marrow soup regularly, 2-3X a week. It helped to bring my WBC count up. It is much cheaper than SLO.
 

undcvr

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Yes, its the same idea behind LDN too, it will help stimulate WBC production and in turn stimulate NKC activity.
 
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Sickof - it's great to hear about you and you're daughter, you're an inspiration to me for sure.

I have to ask, just because it's been bugging me for weeks - What is your avatar picture of? Haha

Vanguard
 
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Hey SOC, that's great continued progress - good to hear! One thing I'd really like to know is what your doc (Lerner) considers as having beat the infection into latency, i.e. what values specifically for HHV6. I know there are different measurements for different labs, but usually the dilution method is one of the most accurate, e..g IGG for HHV6 of 1:10 or less is considered never being infected or full recovery, but a lot of people who came in contact with it have slightly higher titers, e.g. can be detected at dilution levels of 1:20 or 1:40 or higher. Would be interesting to know at what IGG level Lerner would be satisfied and call it latent. Thx & cheers.
 

undcvr

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I hv to agree with you SoCfs and that is to catch this condition really early early on. That is one of the surest ways of beating it. And when you do feel that you are coming down with something, drop everything and throw everything at it. Those were the days I felt like when I was taking 7-8 AVs/ARVs at the sametime.

Pple who recover better on this site are the ones that are aggressive towards it. Back when I had no prescribed AVs to throw at it, I would take alots of immune-boosting supplements. They were helpful.