Nexavir gel, anyone?

Discussion in 'Fibromyalgia Main Forum' started by cherylsue, Jan 23, 2007.

  1. cherylsue

    cherylsue Member

    Does anyone have any experience with the new kutapressin, now known as Nexavir (porcine source). It initally came as an injectible, but now it is in gel form which is supposed to be a better delivery which makes it stronger.

    Has anyone been on this? Has it helped? How long did it take to notice a difference?

    Thanks for your input.

    CherylSue
  2. cherylsue

    cherylsue Member

    It's compounded by the Village Compounding Pharmacy in Texas. That's the only place I know who sells it. Do a search online.

    Have you ever been on Nexavir? Does it help?

    CherylSue
  3. cherylsue

    cherylsue Member

    Debi: Good luck with the Valcyte. Considering your recurrent shingles, this may be the route for you.

    I take it the injectible kutapressin didn't help you that much. Ouch! The transdermal gel is supposed to be stronger accourding to Dr. Cheney. It is a porcine source. I see my doctor tomorrow. I'm going to bring the Nexavir up.

    I took .5mg of klonopin last night. I am so sleepy even 12 hours later. It really knocks me out.

    I wish I felt better. I have a few hours during the day, usually afternoon where I feel better, almost normal. Then the fatigue and malaise hits.

    Good luck with your Valcyte trial. Hopefully, Ampligen will be out in a few years in pill form and that is in option for you, too.

    Hugs,
    CherylSue
    [This Message was Edited on 01/25/2007]
  4. cherylsue

    cherylsue Member

    I just got off the phone with the Village Compounding Pharmacy which makes the Nexavir gel. Something to consider: It cannot freeze. The liquid separates from the cream, and it can't be used.

    They said they shop overnight FEDEX to places that are really cold. They've only seen twice where it became defective - a man put it in his refrigerator, and it froze during delivery.

    Considering how cold it is here now, I think I may wait before investing a few hundred dollars into this product. It could freeze on the plane, etc.

    This was one of the things I was going to bring to my doctor, tomorrow. Shucks!

    CherylSue
  5. Forebearance

    Forebearance Member

    Rats! It can't freeze? It is pretty cold here in Nebraska, too. I am still going to ask my doctor about it when I see her in February. Maybe by the end of Feb. or March it will be warm enough.

    Forebearance
  6. cherylsue

    cherylsue Member

    I saw my PCP doc today, and she faxed an RX for Nexavir to the Village Compounding Pharmacy in Texas. I'm going to wait for a warmer period before I order.

    CherylSue
  7. Slayadragon

    Slayadragon New Member

    What strength are you getting? Do you know how much it's going to cost per month?

    I found out that the gel is compounded with the stuff already in the container with the rubber stopper, and so I might not be able to use it without burning my skin.

    The stopper may not be real rubber, in which case the problem will be solved.

    Otherwise I might see if I can get the compounding pharmacy to ship me a tiny bit for testing purposes. (In that case it wouldn't need to not be frozen, since we'd just be looking for allergic reactions.) Putting it on my skin might cause big burns, but it wouldn't kill me.

    Argh.

    My warning: do not give yourself shots of stuff from bottles with rubber stoppers. Sensitizing yourself and getting this problem is something to be scupulously avoided.

  8. kbak

    kbak Member

    CherlSue,
    Yahoo Groups has a Kutapressin group for anyone that really wants to know more about it. Lots of good info from people using nexavir.

    kbak
  9. cherylsue

    cherylsue Member

    for your advice and encouragement. I probably won't go down the regular AV road, but I thought this would be a safer alternative for my remitting/relapsing CFS.

    Hugs,

    CherylSue
  10. Slayadragon

    Slayadragon New Member

    Did Dr. Levine make any comments on the idea of using Nexavir at the same time as antivirals?

    My doctor recommended that I do this. I am currently on Famvir but will eventually switch to Valcyte.

    Since Valcyte is more toxic, I am wondering if the combination of Nexavir and Famvir (along with the Nattokinaise and transfer factor he also recommended) might increase the number of viruses killed and thus decrease the amount of time spent on Valcyte.

    However, it is important to know how much I'm likely to herx on Nexavir. My doctor does not believe in too much herxing (as I explained in my post "A Strategic Plan for Getting Truly Well").

    Of course, I know that Dr. Levine uses a different protocol (e.g. the one developed by Dr. Montoya) and that her strategy is thus much different. Probably she didn't discuss combination approaches with you, but I thought I'd check anyway.

    Thanks!
  11. Forebearance

    Forebearance Member

    Oh, I'm excited for you, CherylSue!

    Please let us know if it does anything.

    Love,
    Forebearance
  12. cherylsue

    cherylsue Member

    I've been checked for Lymes 3 times. Negagive. Also, negative for West Nile which is in this area.

    I do not fit the profile for bacterial diseases, but more for a viral illness. My doctor never tested specifically because he said treatment would be the same.

    I fit Dr. DeMeirlier's profile for CFS subset Group 1.

    Your condition does sound a lot like mine at the moment. I'm hoping for better. God help us both.

    Hugs,
    CherylSue
  13. karinaxx

    karinaxx New Member

    your day sounds exactly like mine and my sons too.
    this is very typical cfids, they call it the window (the afternoon thing.... my son can only do his math in the evenings, no brain fog)so i think you can call it a day with testing for Lymne, you have cfids (well, i think this window thing is not typical Lymne)!!!

    i think carla nl is using the creme.
    dont know though if it helped
    karina
    [This Message was Edited on 02/04/2007]
  14. cherylsue

    cherylsue Member

    I'm starting with the lowest dose 16.67 mg/ml gel (30ml)

    This cost $185 plus 38.55 in shipping. I received a medical form to submit to my insurance. It's an HMO, so I don't know how much they will reimburse even though it was my HMO doctor who prescribed it.

    I'm going to apply 1 ml after my shower either to my inner forearm or thigh.

    I spoke with the pharmacist and he thinks I may not see results until I go up to 50 ml. My body is so sensitive and reacts to everything, so I will play this one by ear ( or arm or thigh).

    I just read on Dr. Teitelbaum's latest Q & A website that he is now recommeding Nexavir for a patient. He must have just started doing this. It looks like the top CFS docs are getting on the bandwagon. This is reassuring. But the proof is in the pudding (or gel). Will it work for me?

    Here goes.

    CherylSue
    [This Message was Edited on 02/13/2007]
  15. cherylsue

    cherylsue Member

    Well, I just applied the tan creme/gel to my inner arm. It does have a barnyard smell to it. I hope I get used to it. I think I might have to apply it to my thighs because I don't like the smell. No one ever mentioned this.

    Will keep you posted.

    CherylSue
  16. Slayadragon

    Slayadragon New Member

    Good luck to you!

  17. cherylsue

    cherylsue Member

    Well, I must say it has been an interesting day. After I applied the eau de barnyard, I mean, Nexavir, underneath my forearm, I could smell it and taste it all day. I think I will apply it further from my nose, like behind my knee tomorrow.

    However, I noticed I didn't get my usual flulike malaise today. Now that's something to oink about.

    CherylSue
  18. Slayadragon

    Slayadragon New Member

    Wow, if the Nexavir really is responsible for lifting your malaise that quickly, I'm really impressed!

    Perhaps it's time for me to put in another call to the company to find out about the rubber stopper issue.

    I can't wait to find out how you do in coming days.

    Best, Lisa

  19. Forebearance

    Forebearance Member

    Oh boy, CherySue! Thanks for the report! I was wondering if this is the type of thing I would be sensitive to or not. It's not exactly a drug. But you seem to be getting a fast reaction to it.

    It would certainly be more economical to be sensitive to it!

    Oh man! They didn't tell us it smelled piggy! My Armour thyroid pills do, too, but I don't have to wear them!

    I'm so glad that it's giving you reason to oink! lol

    Love,
    Forebearance
  20. JolieLuLu

    JolieLuLu New Member

    very compelling testimony about your fatigue lift. Can you describe your energy level in more detail?

    I hope your energy lift was an added sense of general well being:)

    When i get extra energy from a synthetic source, it is usually an uncomfortable speedy feeling.

    man, the barnyard smell??? holy crap! lol Any way to mask that smell?

    My best to you,

    love and light,
    jolie