Discussion in 'Fibromyalgia Main Forum' started by cma331, May 9, 2006.

  1. cma331

    cma331 New Member

    I was on KU for many years.........with much success. I was only taking 1cc daily as directed by my Dr. Went in to a 2 year crash when it was not being manufactured by Schwarz anymore.......And off the market it went.

    I joined the KU at Yahoo group...who fought to get it back.

    I have now been on Nexavir , since its arrival back on the market; by NexcoPharma.

    At first I was only on 1cc per day, because of the cost. ........and I started joining the world again.

    Then when I went on the 2cc daily dosage, that is reccomended ......I improved greatly. This was over a period of 4-5 months. I started to join the world again. I was even able to give up my sleep Med.

    This past month......I have been out every day!!
    I have done my own food shopping!
    I even got to a Mall.
    I have a social life again.
    And for the first time in many years.....I make plans in advance.

    THUS........YES......It has worked for me, which is what I wanted to share with you all.

    For the person that is afraid to give herself injections......Try it, it is worth it. Do the first few in your Doc's office; with the nurse.

    Yes, I too, am running out of spots on my body.......I use a larger syringe and take the 2cc at one time.

    Since it is the same ingredients as KU has been approved by the FDA for 50 years plus.

    I would like to discuss the cost, and how you all are getting yours. I was getting it thru my private Pharmacy. With a script from my DR. The price kept going up.
    Today for the first time , it was faxed directly from my Dr. to Nexco. They will send it directly to me. It will save me $75.00 every 20 days.
    I was so excited . They try so hard to work with you there.

    I has signed up with Humana Ins. Co. ; thru Medicare part D. It was on their formulary for 4 months. Thus I signed with them. Natch; it was dropped by Medicare ; right before my enrollment started. A bit of a disappointment.

    Nexco told me they are trying to find a Co. to pick it up. You just have to stay in touch with them.

    Sorry this is so long winded ; but if it can help just one person; it is worth it. I have gained so much from these CFS/FM sites; i just want to give back.

    This Med; along with the exciting news ; of the breakthru these past few weeks; published in the CFS Journals ; is enough to give me hope........something I had lost.

    Soft Hugs, Carole

  2. cma331

    cma331 New Member

  3. horselover2

    horselover2 New Member

    hey carole -
    i definitely think i've seen an improvement overall, since i started on the nexavir, now 3mos. only, my doc has told me to max it at 1cc daily. i told her i heard some used 2cc's for best results, but she told me to stick to 1. i wonder how i'd feel with 2cc's. i'll have to check that out again with dr.
    anyway, yes, i hate doing the shots, but it's really not too bad. i know everyone is different, so i'm glad the nexavir seems to be helping. glad it's helping you too!
    [This Message was Edited on 05/09/2006]
  4. cma331

    cma331 New Member


    A suggestion..

    Bring in the insert ; that comes with the Nexavir bottle; to your Doc......

    It says ..dosage....2cc daily.

    When my Doc put me on the 1 cc.......I did that.

    I know a lot of Drs may keep the dosage lower; because of the high cost, so more of their patients can use it.

    I found a big improvement with the increase to 2cc.

    So glad you are seeing an improvement. I want it to help everyone ; and see more Docs prescribing it; so Nexco( which is a small Co.) can keep manufacturing it.

    Good Luck........Carole
  5. sues1

    sues1 New Member

    I gaher it is a shot and you can give it in various body places? How much does it run?

    I do not remember hearing of this before......I know nothing about it at all. Susan
  6. cma331

    cma331 New Member

    Hi Susan.....

    You prob were not on Kutapressin ; if you have not heard of Nexavir.

    It is a liver extract, which was found by CFS specialists; to help many with CFS/FM .Drs around the country are prescribing it......and many other countries also.

    It comes in a vial.....and is administered by injection; usually an insulin syringe ; if you are taking the 1 cc daily.

    Your Dr would advise you where to use the needle. I use my thighs; and sometimes stomach.

    The cost varies by Dr; Pharmacy; and dif parts of country. The basic charge by NexcoPharma is $125.00 per 20 day shipping.

    You can google it.......and get more info.

    Don't hesitate to write, and ask questions. Hope I can help.


[ advertisement ]