The Nexavir/Kutapressin story: real or fake?

[drob31]

I have used both the Nexco cream and previously the injection. With 2ml injection per day, I'm functional. I've use the cream for several months and it works as good if not better. Also, there's no injection so a lot more tolerable. The cream contains other ingredients. I respond very well to either cream or injection. It works very well for me.

The big issue is price/cost/insurance for the cream vs injection. I was on the injection for a long time. Virtually since it was introduced and became grandfathered into it with my health insurance. I had a $50.00 copay. With cream the price has been anywhere from $350.00 to $475.00 for a supply of two bottles. The cream is considered an over the counter product and will not be covered by any insurance. I kind of agree with above comments regarding this being a rip off and way over priced. However there is no other option for people within the USA due to a patent.

The patent for Nexavir is 5,055,296.

As well, once anyone googles this patent it's somewhat easy to see the process for making kutapressin, neavir, 4me. I highly doubt that the actual manufacture is expensive. It's the certification/approval process for the product that's the issue.

Nexco cream contains borax, caprylyl glycol, coconut oil, emulsifying wax, phenoxyethanol, porcine liver extract, purified water, rosemary essential oil, sunflower oil, vitamin e oil. listed as inactive ingredients. The active ingredient for Nexco cream 75 is listed as Echinacea angustifolia 3x 1% and Glycyrriza glabra 3x 1%. Listing the porcine liver extract as an inactive ingredient is a way to go around legal issues.

The disclaimer is that the product has not been evaluated by the FDA for safety or effectiveness, safety or efficacy.

The actual manufacturer is OHM pharma, Inc in Mineral Wells, TX.

Roger did tell me that he would expect it to cost $500,000.00 to have injection certified from a manufacturer within the USA and that's the reason it hasn't been done. However at $250.00 a bottle of injection, it would only take the sale of 2000 bottles to cover the certification claimed.

As well, there are patents claiming use of mammalian liver extract for things such as hepatitis B. From my reading the Nexco patent covers using the product to treat Chronic Fatigue Syndrome.

It would be very nice and helpful to our community to find a way to make a Kutapressin cream available at a reasonable price that everyone with this condition could afford. I don't think the Nexco patent covers cream with other ingredients listed as the active. It's very much a shame and disservice that a product that works for many is being held hostage.

Hi Joe, is this your first post here?

 

[JoeK]

Yes, however a long time reader

 

[aquariusgirl]

What happened to the NZ distributor?

 

[drob31]

What happened to the NZ distributor?

I think that's the guy who KDM jiu jitsu attacked to get the supply.

 

[drob31]

Yes, however a long time reader

Well, thanks for the reply. I just spoke to the company and they are sending out a 15ML container of cream, which is like half a month supply for $200. This seems a little more doable, and maybe it's enough to see if I get any results.

 

[drob31]

@Hip , do you think Valtrex is better for just regular EBV than Nexavir?

 

[JoeK]

@Hip , do you think Valtrex is better for just regular EBV than Nexavir?

I've tried valtrex, valcyte and on their own, no effect. Paired with Nexavir a big effect. However valcyte is toxic long term and will effect renal function.

Famcyclovir with Nexavir is a great combo with minimal renal damaging effect. I do not get ebv in out of control rages with this combo.

 

[Valentijn]

I think that's the guy who KDM jiu jitsu attacked to get the supply.

No way!

I heard it was a crossbow at 100 yards, followed by a dramatic escape via helicopter

 

[Sushi]

It would be very nice and helpful to our community to find a way to make a Kutapressin cream available at a reasonable price that everyone with this condition could afford. I don't think the Nexco patent covers cream with other ingredients listed as the active. It's very much a shame and disservice that a product that works for many is being held hostage.

Johnson compounding pharmacy in MA used to distribute Nexavir in the States. They told me that the creme (which was in development at the time) would be made from the powder in the capsules. I tried the capsules for a month with no effect. But is now sounds like the creme has a different formula--but still is way too expensive--sad. Glad the creme worked for you.

 

[HowToEscape?]

Have to be quick, am tired, will come back to this thread. For now:
A. I would avoid the Indian fronted operation, sounds unlike an outfit I'd trust with an injectable.
B. It is still produced in the USA, contact Dr Enlander's office in NYC. He is retiring, but the office is still open. They may be able to send it without on Rx, OR they can arrange it with your MD, at least at first. Whoever produces it for them may be able to handle it as well. Kutapressin was FDA approved a long time ago, don't know under what name. There are a fair number of people in the US who use and rely on it (CF/ME ppl).

 

[Hip]

@Hip , do you think Valtrex is better for just regular EBV than Nexavir?

As an ME/CFS treatment, the evidence base for using Valtrex to treat EBV-associated ME/CFS seems a little more robust than the Nexavir evidence, because Dr Lerner conducted a study on Valtrex and Valcyte. From the roadmap:

Dr A. Martin Lerner has shown that the antiviral drug valacyclovir (Valtrex) at a dose of 1,000 mg four times daily is often beneficial, though it is necessary to take this drug for around 2 years in order to get improvements.1 Those who experience side effects from valacyclovir can substitute with famciclovir (Famvir) at the same dosage; Famvir is usually much better tolerated.

In Dr Lerner's study on 142 ME/CFS patients with herpes virus infections, 75% of patients responded to the appropriate antiviral treatment (Valtrex/Famvir for EBV, and/or Valcyte for HHV-6 and cytomegalovirus); the average improvement in ME/CFS symptoms was a 2-point increase on the Energy Index Point Score scale (for example, as a result of antiviral treatment, an average patient may go from level 4 to level 6 on this scale).1

So the first thing to note is that these improvements in health take 2 years to appear, so you really need to commit to taking Valtrex 1,000 mg four times daily for 2 years if you hope to get results.

The average increase in health level that Dr Lerner obtained in his study was a 2 point increase on the Energy Index Point Score scale, eg, from level 4 to level 6 on this scale.

Level 4 = Out of bed sitting, standing, walking 4 - 6 hours per day (the rest of the day in bed)

Level 6 = Daily naps in bed, may maintain a 40 hour sedentary work week plus light, limited housekeeping and/or social activities

Note that the above represents the average increase in health; some patients may make greater improvements, other patients may make lesser improvements.

Dr Lerner found that 75% of the patients he treated increased their Energy Index Point Score by at least 1 point. So most patients do have some response.



With Nexavir, the improvements in health apparently come faster, within 6 months, according to KDM. However, according to Dr Enlander, Nexavir does not work at all for 70% of patients.

 

[Solstice]

No way!

I heard it was a crossbow at 100 yards, followed by a dramatic escape via helicopter

MEssion impossible.

 

[JoeK]

A question to anyone?

Does anyone have a link, information on how Kutapressin, 4ME, Hepapressin is made, manufactured?

It certainly can't be as easy as boiling pork liver.....

 

[CFS_for_19_years]

https://www.google.com/patents/EP0554887A1?cl=en
Preparation of the liver extract - go down to section 0014. It's too long to reproduce here.

 

[Hip]

Does anyone have a link, information on how Kutapressin, 4ME, Hepapressin is made, manufactured?

Erica Verrillo's book on ME/CFS gives some of the history of Kutapressin:

Read more here.

 

[frederic83]

MEssion impossible.

The part where KDM is hijacking an airplane and leaving New Zealand after committing the petty larceny.

 

[JoeK]

https://www.google.com/patents/EP0554887A1?cl=en
Preparation of the liver extract - go down to section 0014. It's too long to reproduce here.

Thank you.

Another question to anyone is how can a patent hold, apply to using a pork product via a skin cream?

I don't think bacon grease has skin benefit. However, it doesn't seem like if it did anyone could patent it.

I do not see $400.00 of cost to the current product offered for a monthly treatment.

It would benefit many to have a product available that's less than $100.00 a month for millions of people with this and related conditions.

We could be obtaining 4ME in the USA. It's Nexco who prevented, prevents it. And at the same time refuses to produce the patented injection.

 

[Solstice]

The part where KDM is hijacking an airplane and leaving New Zealand after committing the petty larceny.

Spoilers ;( . I hadn't seen that part yet.

 

[Little Bluestem]

But if Nexavir / 4ME was really that good, wouldn't lots of people be taking it? If you are taking 3 injections of 4ME per week, that works out to around $30 weekly, which would be quite affordable if it provided these major benefits.

You can only take the 3 injections/week after taking 7 injections/week, the 3-4/week. That is just more money than some people have.

 

[Sushi]

You can only take the 3 injections/week after taking 7 injections/week, the 3-4/week. That is just more money than some people have.

My doctor had me taking 3 injections per week from the beginning--so there are variations in dosing instructions (and that was just for me, not most of his other patients prescribed Nexavir). But I think the big stumbling block here is cost and availability.