my hopes for antiviral treatment destroyed before I could even...

Discussion in 'Fibromyalgia Main Forum' started by 28years, May 28, 2008.

  1. 28years

    28years New Member

    my hopes for antiviral treatment destroyed before I could even start.

    I went to Dr. Lerner. Got my treatment protocol. Got my script for Valtrex and a recommendation that I start Valcyte after a month on Valtrex. For some reason I had it in my mind that Valtrex only cost about 200 dollars a month. I hoped to get the Valcyte from Roche.

    My nephew went to fill my Valtrex prescription (I’m housebound – it took him almost two weeks to get around to trying to fill my script for me – that’s the level of my support). The pharmacist wanted almost 300 dollars to fill the prescription. I told my nephew to mail the prescription back to me and I would check it out from there.

    So I called my insurance company. My state-sponsored insurance company only allows me $3000 per year in prescription coverage. It turns out, I’ve already used up almost $1900 of that, and the price of the Valtrex is actually about $1200 per month.

    I seem to fall into every crack of every possible assistance program – no Medicare and no Medicaid. My income is well below poverty, but I have some assets.

    I feel totally disheartened. I was already to start this new treatment. Now I feel like I have the choice between totally bankrupting myself, or just allowing my health to continue to deteriorate. My health has been deteriorating quite rapidly over the last three years.

    Sorry to be such a bummer tonight, but I was all set to do battle with this illness that has claimed 28 years of my life. Now I don’t see how I could possibly afford it. And since I’m starting out at such a low level (2 on Dr. Lerner’s scale) not only what I need these antivirals for quite a long time, but though I could expect some improvement, I would most likely still be disabled at the end of it.

    now I don't know what I'm going to do.
    [This Message was Edited on 05/28/2008]
    [This Message was Edited on 05/28/2008]
    [This Message was Edited on 05/29/2008]
  2. findmind

    findmind New Member

    Could you contact your congressperson's health aide, tell your story, and see if they could get the manufacturer to provide some, if not all of your antiviral? Maybe if you tell how you could maybe afford 1/2 the cost, they would throw in the rest; or, generous souls that they are, maybe they'll send you 3 month supplies at a time as long as your dr. prescribes them!

    Grasping at straws here, but one never knows... nothing ventured, nothing gained.

    Best to you,
  3. spacee

    spacee Member

    I think the problem...and I believe you do to, are the assets from your husband's death. Is there anyway that you can get them out of your name?? Other than giving them away.

    You need legal advise. But you might be able to get it through your state congressman for free.

    Feeling for you!!

  4. Lichu3

    Lichu3 New Member

    Contact the manufacturer of Valtrex and see if they have a prescription assistance program.

    Check out Walmart and Costco prices -- big difference between these wholesalers vs. pharmacy stores sometimes (like CVS, Longs, etc.). Don't take one pharmacy's price as the only one -- they'd like you to believe that. Shop around.

    Canadian drug websites may have lower prices. Check to assure the site is based in Canada and well-known.

    Valtrex is available generically also as valacyclovir.
  5. gapsych

    gapsych New Member

    This must be so frustrating.

    Like you, I often fall between the cracks for assistance. I have private disability and believe me I am barely making it at times. But I make too much to qualify for some assistance.

    I would definitely see if there is a program where the manufacture could help out.

    You do not need this when not feeling well. No one needs this period.

    Something has to be done about our health care system.

    Please take care and let us know what happens. It might help someone else in your situation.

    Good thoughts for you,
  6. Elisa

    Elisa Member

    All pharmaceutical company's are required by law to offer a patient assistance program:

    Valtrex is a drug made by GlaxoSmithKline.

    Here is the link for help:

    Here is the toll free number: 1-866-475-3678

    "If you have questions about GSK savings offers or any of the other patient assistance programs featured on this site, please call us toll-free at 1-866-GSK-FOR-U (1-866-475-3678). Trained staff members are available weekdays from 8 a.m. to 8 p.m. Eastern time to take your call. We want to help you to get the drugs you need, even if you don’t take our medicines."

    God Bless,

  7. marti_zavala

    marti_zavala Member

    I have been on acyclovir for really long time and I don't have liver issues from it.

    I prefer Valtrex but there are liver issues to deal with.

    I get my prescription at WalMart for $4.00/refill. (I am on a higher dose so I have to buy a few refills each month).

    The $4.00 Wal Mart Acyclovir covers 200mg per day but I am on 800mg per day so I pay $16 a month for my anti-viral at Wal Mart.

    I don't think I will ever take Valcyte, I am not convinced that the horrible side effects are worth pain.

    I cannot live without my acyclovir, I would be bedridden. It is not a cure but it really helps me deal with life.

  8. ladybugmandy

    ladybugmandy Member

    valtrex is the acyclovir acyclovir cheaper? does it come in pill form?

    i do not think there is any difference between valtrex and valacyclovir.

    the first valtrex patent expires in COULD be available in generic form in the US at that time.

    28years....please call glaxosmithkline...they may have patient assistance programs.

    valtrex is available in generic form in you know anyone who travels there?

    DO NOT give up yet.

    my thoughts are with you...


    [This Message was Edited on 05/29/2008]
  9. chrissy12

    chrissy12 New Member

    My heart goes out to you.... How about contacting Dr. Lerner's office and ask if they have any solutions to this problem? You can't be the first one to come through his office with this dilemma.

    I was shocked when I received the cost of the valtrex and then valcyte.

    I wish you the best!! Please keep us posted and we will keep our fingers crossed for some good news....Cindy
  10. 28years

    28years New Member

    thank you all for your kind thoughts and advice.

    I really appreciate it. I'm trying to hang in there, but it's hard. I'm so tired after my Dr. lerner trip. I just wasn't ready for this. Maybe soon I'll muster up some strength and courage to contact the drug company.

    I'm pretty sure I read some where that valtrex works much better than acyclovir. I think that's because valtrex is used by the body much better.
  11. ladybugmandy

    ladybugmandy Member

    28years....i found this website about patient assistance:

    i think its a great idea to call dr. lerner's office. they will surely know if it is possible to get valtrex for CFS cheaper.

    i have a feeling you will be able to get help with this. it is in the company's best interest for more and more CFS patients to be on the drug....CFS is still an untapped population for drug companies....they are all dying to be the one with the 1st good med for CFS.

  12. ladybugmandy

    ladybugmandy Member


    you will need a doctor/social worker/etc. to act as a liason with glaxosmithkline for you.

    Bridges to Access
    1-866-728-4368 -------- i think this is the # you should call and request forms to be sent to you. you can also request forms online, which is quicker.

    i spoke to someone who says that it is possible to obtain valtrex for off-label usage.

    Commitment to Access ------- for cancer patients

    GSK Access ---------- for seniors who have medicare D
  13. marti_zavala

    marti_zavala Member

    start on acyclovir. Then you will be feeling better as you deal with the hassles of getting the Valtrex.

    I felt better within two days, no herxing.

    I would be bedridden without acyclovir. While I prefer Valtrex, I cannot get it due to insurance limitations. The acyclovir is as good and I think you will be happy to be on it. The Valtrex is said to have something in it to stop the viral replication better than acyclovir so that when you stop, the virus is in remission for longer than acyclovir.

    Good luck to you,
  14. brainfoggy

    brainfoggy New Member

    My doc told me I just have to take more of the acyclovir as it isn't as stong as the valtrex, I take 4 per day @ 800 mg. I get 120 pills for $36 at Costco without insurance. Definitely consider this alternative.
  15. marti_zavala

    marti_zavala Member

    Have you tried the Walmart $4 program.

    WIthout insurance, you can get the 800mg for $16.

    That is what I use, 800mg.

  16. brainfoggy

    brainfoggy New Member

    BUT the closest one is about 20 miles away and with gas prices right now... about the same when it's all said and done. Thanks for mentioning.
  17. sascha

    sascha Member

    patient assistance plan. you can find out if you qualify. if i do, likely you would. call them and start the process.

    or is there some reason valtrex really should come first??

    here is Roche tel: (866-247-5084)

    i filled out forms and was found to qualify, and i have some assets. i have Medicare insurance, which would cover it, but the co-pay would have come to over $200/month, which was too high for me, and Roche agreed to cover that after i submitted all my financial information.

    don't give up! there must be a way.

    do you know for sure you should try the anti-viral route? have you been tested for viruses? i guess you must have been since Dr. Lerner prescribed the valtrex and valcyte.

    sorry if i've forgotten your past history on this website- my brains are mush. all the best to you- Sascha (i'm just about in my sixth and final month on the valcyte)(phew)

    the Roche people have been very nice to work with- and they keep careful track (let me know that i would need more valcyte so that i wouldn't run out before 6 months was up)
  18. marti_zavala

    marti_zavala Member

    walmart now does 90 day refills so you would only hsve 1 trip..

    just a thought

  19. woofmom

    woofmom New Member

    Manganese is an essential cofactor of important enzymes active in the mitochondria, and in the synthesis of glycoproteins, which coat body cells and protect against invading viruses.
  20. Slayadragon

    Slayadragon New Member

    I know there are a few people who have been helped by AV's, but it doesn't seem like a very high percentage.

    Maybe there are other things that you could do to work on your health.

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