Nexavir Information

Discussion in 'Fibromyalgia Main Forum' started by cherylsue, Jan 9, 2007.

  1. cherylsue

    cherylsue Member

    Nexavir

    Available from

    Village Compounding Pharmacy
    975 Corbindale Rd. Suite 100
    Houston, Texas 77024
    1-800-783-5068


    Does not accept insurance, but will fill out a form for you to submit to your insurance.

    Nexavir gel is made from the injectable stuff, but the gel is more potent. It is available in three strengths and comes in 30 milliliters. Dosage: 1 millileter a day.

    50 mg/ml $455 for 30 cc
    33.3mg/ml $320 for 30 cc
    16.67 mg/ml $185


    Dr. Paul Cheney says in his latest DVD that Nexavir gel is the most potent antiviral around and uses that and Hawthorn in his protocol.

    I don't have any experience with Nexavir or Kutapressin, its forerunner. I am awaiting the reports from the CFS Conference in Florida to see if any other doctors support this. Lisa P.'s Dr. Guyer uses it as an adjunct to the antivirals.

    I appreciate anyone's comments, side effects, or experiences.


    CherylSue

  2. horselover2

    horselover2 New Member

    hi- i have been on the injectable nexavir about 10 months. i do think it helps me, i'm not cured, but am able to do more, although i do need to pace myself. i wouldn't mind getting the gel, as i am sick of those needles!
    it's not really that bad-
    good luck-
    anne
  3. Slayadragon

    Slayadragon New Member

    I'm looking at the gel because I have a deadly latex allergy and cannot use any product that requires me to put a needle through a rubber stopper.

    My doctor and I did not talk about potency, and so I don't know if he thinks it would be more effective than the injections.

    CherylSue, thank you so much for getting this info!!! I will call the compounding pharmacy to get the drug code, and then call my drug insurance company to see if I can get coverage.

    (BTW, the reason I have that deadly latex allergy is because I did huge numbers of kutapressin, B12, glutathion, etc. shots. Having all those tiny bits of rubber poked into my body finally did me in. If I could do it over again, I would avoid them unless I was getting a very very very big benefit......)
  4. Slayadragon

    Slayadragon New Member

    Horselover--

    Would you mind telling us a bit about yourself?

    If we knew what kind of condition you're in, what your main symptoms are, what other drugs etc. you're currently using, and what kind of progress you're making with Nexavir.....then we might be better able to decide to pursue that route.

    Thanks so much. I'm glad to have found someone else using this therapy and hope you will follow our progress as we talk about this and other related areas.

  5. Slayadragon

    Slayadragon New Member

    CherylSue/Forebearance/Whoever--

    I called my insurance company and they don't have Nexavir (injectable or transdermal) listed as covered. I'm going to try to see if I can appeal.

    Does Cheney say in those videos how long people should take it for?

    Does he say the dosage? Or what kind of viruses it kills?

    I know that I need to get the DVD's myself, of course. Does anyone know offhand how to get them?
  6. cherylsue

    cherylsue Member

    Dr. Papernik told me at one of our visits that Nexavir is not covered by insurance. I don't think he knew at that time it was in gel form which is supposed to more potent. In vitro it kills all herpes viruses according to Dr. Cheney.

    I think the DVD's are $13 and are available online. I think I gave the address on my The Heart of the Matter post. It is also on one of Forebearance's posts. That's where I originally found it.

    My darn cold is back. I thought I got rid of it, but then it comes back. This is the third time in 2 weeks. Either it is the same cold or I keep catching new ones. I've been out and about socializing or doctor visiting. That will do it. It's a mild cold, but I just can't seem to get rid of it.

    Good luck with the Nexavir. Dr. P. had said that it helps for awhile and then stops, but he was referring to the shots. Thanks for the tip on rubber and injections.

    CherylSue
  7. Slayadragon

    Slayadragon New Member

    I used Kutapressin for quite a while. My insurance covered it. It's strange that Nexavir would be covered by _no_ insurance, therefore. It is a prescription drug, after all.

    I doubt I'll be able to get the NU benefits office to consider approving it, but I will try.

    Kutapressin did nothing for me, even though I used it for a long time. Conceivably I could have pulsed it, but I don't see why that would have helped if it wasn't doing anything.

    I tend to think it was like all the other antivirals I tried until now, though. If your viral load is out of this world (and apparently mine is), knocking out a fraction of them isn't going to make much difference.

    It's conceivably that Nexavir might be a good adjunct to the Famvir, though. Since my goal is to get rid of as many viruses as I can during this time (and thus allow my immune system to start functioning normally all by itself on a permanent basis), a short trial of something that would help me get the viral count down even lower probably would be worth it even if I had to pay a lot of money for it.

    I'm going to need another talk with Dr. Guyer before deciding, obviously. He suggested seeing him in two months, but perhaps I will go back in another month for fine-tuning. I really want to get this right.

    I wonder if there's anything that kills that PIV-5 (parainfluenza) virus associated with CFS. I'm not sure how much of a problem it is, but getting rid of some of it couldn't hurt.

    I went back up to 500 mg of Famvir yesterday and am having lots of congestion and feverish feelings myself today. I hadn't been having that particular symptom for a while before my "break" and am not sure what to make of it.

    Feel better.
    [This Message was Edited on 01/10/2007]
  8. cherylsue

    cherylsue Member

    Sorry to hear you feel feverish and congested. Do you think this is herxing or did you pick up a bug in Indianapolis?

    In either case, I hope you feel better soon, too!

    Cherylsue
  9. Slayadragon

    Slayadragon New Member

    I'm herxing, definitely.

    I went back to the full dose of Famvir yesterday. Perhaps that was a bit quick since I hadn't recovered from my travel stress, but I wanted to get going again at a higher dose to minimize the chance of resistant strain development.

    As I mentioned in my summary of my conversation with Dr. Guyer, that's not his main strategy, but there's no reason to let it happen if it's not necessary.

    This feels like the congestion I've gotten periodically since starting Famvir, although I'm not sure why it comes and goes.

    I'm kind of surprised I'm feeling as well as I am today, considering that I'm usually at least this tired after travel in and of itself. My system is getting stronger, I think. Or, certainly, I hope.
  10. cherylsue

    cherylsue Member

    Good news to hear you are feeling stronger.

    I am still fighting a mild cold for the last two weeks. Mostly clear drainage. Nothing gross. But you know, I almost feel "normal" in this state. Weird. I wonder if it is really a cold, or some type of die off like you are experiencing. I think it is a cold, though, but a long lingering one.

    CherylSue
  11. cma331

    cma331 New Member


    I have just gone back and read a lot of the postings on Nexavir.

    I was on KU and now the past year on Nexavir.

    I would love some feedback on how people are injecting it.

    SubQ ? IM?? What size needle? Dosage?
    Are you alternating your dosages?

    Thanks...Carole
  12. Slayadragon

    Slayadragon New Member

    Do you feel slightly feverish from time to time? I seem to be getting all kinds of symptoms from herxing, but that one has been consistent for me.

    One person told me they did get Nexavir insurance coverage today.


    Carole: At $500 a month for the gel (which is what Cheney recommends), I've yet to see anyone here using it. I'm continuing to watch though.
    [This Message was Edited on 01/16/2007]
  13. cma331

    cma331 New Member


    Would love to know what insurance co. covered Nexavir.

    Medicaire won't.

    I don't use the gel cause of the extra cost.

    $250. for a 20 day dosage is ridiculous enough.
    Thats 2 vials; at 2cc per day.

    Still not sure how much it is helping........but it sure sems on the days i skip; to save a few $$$......i feel worse.

    Carole
  14. spacee

    spacee Member

    That is terribly expensive stuff.

    I was on Kutapressin for 16 years. Began corresponding with a woman on this board who had been on it also. It allowed her to work. She worked for a major computer company on the older version of computers. Even traveled to Florida from Colorado to work on Boeing (or some other big company's) computers.

    When Kuta was no longer available she started using Isoprine (?). She could no longer work and even became unable to email me after time. She was in terrible pain.

    Now, she is on the Nexvir. She is bedfast but her husband rigged the computer monitor so it swings on a "arm" over her bed. On "good" days she can use the computer.

    She emailed me right before the IACFS conference that she was feeling well enough to talk on the phone. But my sis is here and haven't gotten it done...time zones and all.

    Anyway, her's is a very sad story.

    That's is all I know about Nexvir.

    Spacee
  15. JazzieS

    JazzieS New Member

    I'm a veteran member who's been m.i.a for a long while.

    I've expressed in my recent post here that I admire and respect Dr. Cheney lots.

    All of us should keep in mind that even though we all have CFIDS, our major problem area may differ vastly. Judging by my disease progress and resent echocardiogram results, I unfortunately fall in to the catagory of 'heart failure' (diastolic dysfunction), in addition to fms, Addison Disease.

    There're 3 main viruses that would damage our heart, such as: HHV6, CMV, EBV. If you don't have a heavy viral reactivation, and your heart tests doesn't indicate diastolic heart dysfunction....why go thru the heavy duty, expansive treatment?

    I don't seem to remember Dr. Cheney gave a definate time limit for 'lasting improvement'....in his own case, it is taking 5 yrs so far to recover from his heart transplant surgery.

    Nexavir is extract from pork liver,......does insurance company consider it as a 'drug'??? It sounds awfully expansive, isn't it??? not some luxury any average-Joe can afford, that's for sure.

    Hugs,
    Jazzie



  16. Slayadragon

    Slayadragon New Member

    Are you doing anything special along with the Nexavir (other than the typical CFS stuff)?

    In what way does it make you feel better, would you say?

  17. cma331

    cma331 New Member


    In addition to my Nexavir daily 2 cc self injections , subQ; a nurse come in 2 x a week and injects them deep IM. Doc won't allow me to do that myself. She also gives me a 3 cc injection, IM , with b12 and magnesium.

    I give myself daily b12 injections with a insulin syringe. 1 cc.

    Right now my Doc is trying me on long term AB therapy.

    I am just finishing my 2nd week, so no verdict is out on that yet.


    It simply gives me more energy. Less fog, and confusion.
    More ability to live. Much less depression. It clears everything ; so i can function better.

    One of the best things , that helped me, is vitamin IV infusions. That gave me great energy. I just can't get them locally anymore.


    I also take the usuals, pain killers, etc.

    Hope this helps you. Carole.

  18. cherylsue

    cherylsue Member

  19. Slayadragon

    Slayadragon New Member

    I just got a call from the head of the company that markets Nexavir. I had written the company an e-mail yesterday asking whether the product was housed in bottles with rubber stoppers or in bottles with synthetic stoppers, since I have a rubber allergy.

    He said he would find out and get back to me.

    He seemed really nice. I don't know that that means that Nexavir is a good product, but it makes me a bit more positively disposed toward the company anyway,
  20. cherylsue

    cherylsue Member

    Hopefully, it is not rubber. Since we are going to have freezing temps next week, I will wait to order. My nice PCP faxed the prescipt in today during my office visit. I wanted to try the lowest dose for a month since I am so sensitive to meds. The Village Compounding Pharmacy ships overnight, but the gel congeals if it is frozen or refrigerated. It is delivered by FED EX before 10 am. I want to make sure I am home when it is delivered.

    My doc also ordered a DHEA/Cortisol test for me, too.

    Cherylsue