Forum Style


I could use some advice. As of 1/1/17 my co-pay for Valcyte went from $60 to $1,500 per month. My Prescription coverage is through my employer and is primary and Medicare is secondary. I have been on Valcyte for 8 years and everytime they try to discontinue it I get major CMV infections.

Amy help will be greatly appreciated

You need to be a member of to add comments!


Email me when people reply –


  • Well, there is a solution no one has brought up.  I have been dealing with a number of warts since my TX.  This due to having the HPV virus plus now being immune suppressed.  These warts were getting huge, painful, etc.  So I was working with a nunber of Docs.  One doc was getting concerned about one of the warts becoming cancerous.  It was then that I was referred to an "exotic disease" doc.  He offered that there are some very powerful anti-virals.  One that was orginally used for HIV patient is cedofovir.  It works, but it has major side effects:  It can take out the kidneys.

    His idea was to infuse me with cedofovir and "block" the kidneys.  Not sure how they do that, but he seemed to think it would work.  Guess he should know.  I opted to not go that route so I did not get any more details.  

    Cedofovir.  It kills viruses.  It is used to treat CMV eye infections in patients with AIDs.  But i do not know if it is a cure.  Proceed with caution.  But I suggest you look into it.

  • Prayer too is helpful. God moves in mysterious ways. Call unto me and I will show you great and mighty things that thou knowest not. One of my favourites. =)

  • Move to Australia. They have a really great medicare system. One of the best in the world, I'd say! =)

  • Thank you for the advice. I did work out a more reasonable co pay. at this time my transplant center is not comfortable with the generic Valcyte due to reports of manufacturing issues.

    On another note I have been on Valcyte for the past 8 years.I am showing signs of resistance, which is the fear when you are on it for extended periods of time. The big problem is that at theis time Valcyte or generic Valcyte are the only oral medication that is effective against CMV. There is Lefludamine that might be a minor help and IVIG which might also help but neither is proven to be effective. There was a hope that Brincidovir would be approved by the FDA as an oral medication for CMV and BK but they failed their phase 3 suppress trials. There are not any other drugs in the pipeline to treat CMV or BK viruses. A real problem for us that were CMV and BK negivitive and transplanted with CMV and BK positive organs.

  • Mishel, I am working on my 10th year - still on it. Think I would question that

  • I was told that its not an effective medication for more than a couple years.
    Maybe change insurance that covers brand name meds ?
  • Genentech Access to Care Foundation  1 888 754 7651,  M - F, 9am to 7pm ET may be able to assist you

  • Let me know if you need the phone number
  • The company is genentic
  • I was on valcyte for a while and received it for free from the company that makes it please try to get in touch with them or reply back to me and will try to help you
This reply was deleted.

Transplant News


                      Transplant News



Purolator Air Filters

Facebook & instagram

Looking for My Kidney Hero

My dear Friend Susy - a double lung transplant survivor is in need for a Kidney Angel (O positive blood type).  If you can be Susy's Hero- contact her at Thank You So Much!

Latest Activity

David Paul-Jones is now a member of
59 minutes ago
Don Reed left a comment for Don Reed
3 hours ago
Don Reed updated their profile photo
3 hours ago
Don Reed posted photos
3 hours ago
Katie Michelle posted a discussion
4 hours ago
David Cary posted a blog post
5 hours ago
Neal Tailor replied to God is good's discussion tacrolimus and food
6 hours ago
Neal Tailor replied to Neal Tailor's discussion How much protein in the urine is normal for a kidney Tx patient?
6 hours ago

Lung Transplant Foundation

Contact Us