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Valcyte - How long have you been / were you on it?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by ArgyrosfeniX, Dec 3, 2011.

  1. searcher

    searcher

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    SF Bay Area
    Hi babs- I have Kaiser and the doctors there won't prescribe valcyte. If I didn't have insurance, genentech would cover valcyte. I have even considered cancelling my insurance since valcyte is 5K a month, but I won't be able to get other insurance since I now have a preexisting condition and it seems too risky to live without any insurance. Fun in insurance-land!

    For now I am trying cycloferon and medicinal mushrooms since they target NK cells and are 1/100th the cost, so the combo is my poor-man's valcyte :)

    http://www.transplantaccessservices.com/tas/index.html is a direct link to the forms to apply for valcyte. Although the site and paperwork says says the program is for transplant patients, they don't care what the diagnosis is as long as you have a prescription and your doctor will fill out the forms. You just need to get official rejection from your insurance twice once your doctor gives you a prescription.
     
  2. niall

    niall

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    My illness has manifested itself in a very slow progressive way. I got the flu in late 1986 doing nursing agency staff relief in the Miami area. A few months later, I began to feel a burning aching pain in my left buttock. As time went on that pain spread to the right buttock and then both hips and stayed in that location for about a year. Muscle twitching in my legs started six months after the pains began and myoclonic jerking of my extremities some months later. As time passed, I felt pain and twitching in other areas of my body. I went back to work after taking a year off when I concluded that, despite my best efforts, no one knew what was happening to my body. As early as 1991, I felt a certain diminution of my energy but not nearly enough to interfere with a normal level of activity. I continued living my life to the best of my ability while dealing with the pain which also began to include muscle spasms and stiffness at times. Then in 2004, I had a procedure done on my back called a spinal endoscopy. After that, I developed severe pain and spasms in my legs for two weeks. I was unable to sleep much although I continued to try to go to my home care nursing job(taking care of a "preemie" baby). Life was hell. Ever since that time I have had symptoms of ME/CFS. I found Dr. Klimas in 2005. It was she who put me on Imunovir in 2006 which helped especially the first time I took it, but not so much after that. She put me on Valcyte in 2009 while I continued to try to work but could only manage part time. After the six months of Valcyte proved ineffective for me, Dr. Klimas advised me to file for disability. I had saved all my lab work and Dr. Klimas' notes and was granted disability status after the mandatory five month waiting period which I have been told is most unusual; oftentimes it takes 12 to 14 months.
     
  3. ArgyrosfeniX

    ArgyrosfeniX

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    River Falls, WI - USA
    Did the flu in 1986 start the ME/CFS symptoms? Or did they develop in 2004 after the spinal endoscopy?

    I've found that the Valcyte works for those that developed their symptoms during the initial infection...

    Thanks for sharing your story niall! :hug:
     
  4. niall

    niall

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    I wish it was a happier story but I'm still standing and fighting the good fight as best I can. Never in my wildest imaginings did I expect my life to be this difficult.

    The classic CFS symptoms such as sore throat, profound relapsing fatigue, red spots on tounge and increased myalgia (the latter was due to the elevated viral load, EBV & HHV6) started after the complications of the spinal endoscopy. Before then there was no significant reduction in my energy. Prior to April 2004, I could still jog but not as far or fast as I used to before the fibromyalgia. The muscle symptoms I experienced from 1987 to the present is now called fibromyalgia with fasciculations. Dr. Klimas believes that the fibro which started in early 1987 is the same illness I have today just an earlier stage of it. In other words there are people with fibromyalgia today who actually have ME/CFS but their immune system hasn't yet become compromised enough to develop full blown CFS. For those people I think that it would be a good idea to have an immune panel done by a CFS doctor to determine the status of their immune function. Dr. Klimas said that to get and accurate picture of, for example, the natural killer cell level, the blood should be run in the lab within four hours. I'm not sure that that happens in Quest or other labs.
     
    Kati likes this.
  5. ArgyrosfeniX

    ArgyrosfeniX

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    River Falls, WI - USA
    So I'm thinking about checking in with my Internist and starting a new round of Valcyte.

    Last time I did the doubling up (900mg twice daily), but that put me out of commission
    for 6 weeks last time. I'm thinking of going at it the reverse method this time and doing
    a half dose for the first 3 weeks (~450mg daily) and see if I can slowly work my way up
    to the regular 900mg daily.

    Any thought?

    Thanks! :hug:
     
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Do you have ebv as well?? Thinking of staying at one dose of valcyte and add some valtrex or famvir for ebv, plus famvir may help some for other herpes viruses like cmv/hhv6??

    I am about to start morning dose of valcyte 450mg and famvir at night 500mg, i have cmv/ebv. This dosing is mainly out of cost and also that famvir has helped me quite abit, so hesitant to drop it and will keeep it going after i am finished with valcyte??

    cheers!!!
     
  7. SOC

    SOC Moderator and Senior Member

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    As best as I can recall, Dr Lerner prescribed Valcyte for us according to this dosing: 450 in the am for 3 days, 450 in am + 450 in pm for 3 days, 900 in am + 450 in pm maintenance. I think more than 1350mg per day has shown to give too many negative side effects. After 1 year, we were switched to 1350mg in the am "to increase tissue perfusion". Since Dr Lerner has more years prescribing Valcyte than any of our other ME docs, I'd suggest trying his protocol unless your doctor feels strongly otherwise.

    Some doctors have prescribed a high dose to start and then drop back to a lower dose. I believe they have found that there are far too many side effects from that dosing schedule. Antivirals stop viral replication, they don't kill infected cells, so fighting a pervasive herpesvirus infection is a long-haul proposition, IMO. It's still up to your immune system to kill the infected cells, so if your immune system isn't up to snuff, it might also be worth taking an immune modulator -- AHCC for example, or Immunovir if your internist will prescribe it.

    My daughter had no side effects from Dr Lerner's dosing schedule. I was much sicker and had an IRIS-type reaction at about 4 months, but felt much better once it passed.

    Keep us posted on how the Valcyte works for you.
     
  8. ArgyrosfeniX

    ArgyrosfeniX

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    River Falls, WI - USA
    I haven't tested positive for anything yet and frankly, after 22 years, I'm not trying anymore to figure it out.
    Was able to convince my Internist last time that my ME/CFS had started with a viral infection and he agreed to give it a test run. We did weekly safety labs for the first 4 months though to make sure it was going okay. Every 2 weeks after that. Followed the preliminary Montoya study for our guide.

    Thanks for the update Heapsreal and good luck with your med changes. I hope they work out for you...



    Do you know where I can find a copy of Dr. Lerner's protocol?

    I noticed that the dosing you mention in the beginning is for days. Is that correct? Just want to make sure as that seems awfully fast for dosing progression to maintenance.
    Thank you so much for your insight. If I can find the protocol, I'll definitely bring it to my Internist's attention! :D

    Thanks everyone!! :hug:
     
  9. undcvr

    undcvr Senior Member

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    I have been on Valcyte for a year. All through the year I have been on 900mg 2X a day. This is the minimum dose that works for me, anything less and the EBV kicks back up. It does not solve all the symptoms but it does suppress the EBV/HHV6.

    My take on the Valcyte is this: once you get off it, the EBV will come back. Valcyte simply stops the virus from replicating in the B cells. This gives the immune system time to tgt the infected B cells and clear them from the body. But EBV will always be hiding in your body, you cannot totally eradicate it, you will need a healthy functioning immune system to do that. Somehow due to the interaction of the immune system with either the EBV or other virals infections the immune system produces autoantibodies which attacks the body itself. Much like an auto immune condition, much like lupus. It is the immune system that is malfunctioning, EBV is simply the opportunistic icing on the cake. We need to treat the production of those autoantibodies.
     
    vli likes this.
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    australia (brisbane)
    This might be why many use valtrex or famvir after a course of valcyte. I think this needs to be done until there is a good way to fix nk dysfunction in cfs/me.

    cheers!!!
     
  11. aurora

    aurora

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    I was on Valcyte for 3 years. I would not recommend that anyone stay on it for this long. It helped me tremendously, almost to the point of being normal. In fact, it worked so well, that I would push myself to the limit, relapse, and then sometimes increase the dose to the initiating amount to get back to my functioning level. The few times that I tried to go off of it, I relapsed, so I just kept taking it, knowing that you really aren't supposed to stay on it that long. I admit that I sound like a drug addict, but the idea of returning to my pre-valcyte CFS status was just too devastating. So I gambled, trading having my life now for the possibility that I could suffer adverse consequences at some point in the future.

    And suffer adverse consequences I did. After I was on the drug for about a year and a half, I started having a lot of odd, seemingly unrelated symptoms. My once extremely curly hair turned straight and I started having gastrointestinal problems and pains in my abdomen. The problem was that my liver enzymes were fine, so I didn't attribute it to the Valcyte. Eventually my skin started changing, and I began to get severe headaches and have cognitive difficulties. I woke up one morning and had trouble walking and talking. It turned out that I had a tumor in my pituitary gland that started hemorrhaging. Still, my liver enzymes were fine, and none of the doctors could figure out what was going on. Things got progressively worse - I had severe trouble breathing, and skin biopsies indicated that I might have scleraderma (though the blood tests were negative). I hadn't wanted to go off the Valcyte during this time because I didn't want to have the CFS symptoms on top of everything else. Eventually, I tried going off the Valcyte because everything else had been ruled out, and I eventually recovered. I have been off the Valcyte now for a year and am still experiencing some of the effects, but the are gradually receding. The CFS symptoms have started to return, but I just have to deal with them at this point.

    I'm not going to tell anyone not to take this medication. It gave me about two years of my life that I otherwise would have spent in bed. But it is a very potent drug and if you start experiencing ANY odd symptoms, you should stop taking it and see if they go away - even if your liver enzymes are fine. I definitely wouldn't recommend taking it more than a year and a half, although I think each of us needs to make our own decisions about what is best. I know what it's like to be desperate to get better, but sometimes we just have to suffer through it and hope that there will be better treatments in the future. Unfortunately, I had to learn this the hard way. At least I am now more optimistic about the future than I was before. The fact that the Valcyte did help me is a positive sign that whatever this is can be treated. And it seems that the scientific research in this field is progressing at a rate heretofore unseen. I do believe there will be an effective treatment within the next five or ten years. So at least I now have something to help me get through that I didn't have before: hope.

    Best of luck to you!
     
  12. Xandoff

    Xandoff Michael

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    Northern Vermont
    Hi Babs,

    I just bumped into your Q from a while ago. The first six to nine months I didn't feel that great. I am on the fourteenth month like I said and I continue to improve and don't really notice the valcyte I have taken it for so long. My chronic pain is the lens by which I judge everything. My IQ fluctautes which is maddening. My memory and word finding abilities are much better but then I have my days. The whole key is staying within my energy envelope and not pushing it and trying to pretend I am not sick. I am very happy to stay on Valcyte as long as I can. I hope to feel better when I go off it, but I feel the longer I take it the better. I have been on Cymbalta for six years and worry about that. Good luck all and Merry Christmas 2011!
     
  13. ArgyrosfeniX

    ArgyrosfeniX

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    River Falls, WI - USA
    Got in to see my Internist yesterday, hoping that I'll be able to get back on the Valcyte. I gave him some printouts from Dr. Lerner's website. Said he'd call me next week... Hopefully, he'll see it as a good idea!

    I sooooo hope he's okay with getting me back on. It's the only thing that has actually helped!

    Wish me luck everyone!! :hug:
     
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    australia (brisbane)
    good luck, keep us posted? What sort of dosage you looking at??
     
  15. ArgyrosfeniX

    ArgyrosfeniX

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    River Falls, WI - USA
    I'll likely start making blog posts about. I kept an audio journal last time - just haven't transferred it to text yet. Might add that to the blog later on too...

    I'm hoping to start low at 450mg and work my way up as my body adjusts to it. Can't take off work like I did last time (6 weeks), so have to keep the herx reaction manageable.

    Merry Christmas Everyone!
     
  16. ArgyrosfeniX

    ArgyrosfeniX

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    River Falls, WI - USA
    Just wanted to inform everyone who is subscribed to this thread that I've started taking Valcyte again last week.
    I'm starting at 450mg and will work my way up to 900mg soon. Not sure if I'll stay there or go to 1350mg.

    Check out my blog to see how things are going - if you're interested... ;)
    http://forums.phoenixrising.me/blog.php?3020-ArgyrosfeniX
     
  17. Sojourner

    Sojourner

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    Greetings! I've been lurking on this site, but this is my first post.

    I was diagnosed with CFS almost a year ago, after seeing numerous doctors the year before that. I'm still waiting on my Lyme and Lyme co-infection results, and at this point, I think I'd be relieved if I had it as the cause of what brought my immune system down. Anyway, I've had high viral titers of EBV, HHV6, and CMV since last March. While I've done a lot of different treatments over the last year, I signed on for Valcyte last October.

    Anyway, I was really discouraged to discover last week that despite taking Valcyte for three months, my titers were higher than ever! It would be one thing if it were cheap and had no unpleasant side effects, but I find it makes me nauseous for about six hours after each hit. I grudgingly agreed to continue taking it, but if there isn't an improvement over my pre-Valcyte titers in the next two months, I plan on stopping in April.

    Does it take a long time to show progress with Valcyte? It seems as though it is the popular treatment for these three viruses.

    Thanks!
     
  18. m1she11e

    m1she11e Senior Member

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    Florida
    Wow Aurora, what a story! I understand taking something to JUST FEEL BETTER! If it would make me feel good but kill me in 5 years I would do it. We all want our life back so bad. Im glad you posted this. I dont think any of us really know all of what Valcyte is really doing in our body. The fact that it could cause Cancer was the least of my worries. Ive never recovered to my pre Valcyte days and I took very few pills. Slowly I improve but I wish I had never taken it at all. It has indeed saved some though. I hope they figure this out soon. We are a desperate bunch!!
     
  19. AliceZ

    AliceZ

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    Colorado
    Sojourner-
    I have been taking Valtrex and Valcyte for 18-ish months for EBV, CMV and HHV6. For the first 6-ish months I got significantly worse and felt terrible, but have slowly improved since then, to the point where I am now better off than I was before I started the medications, but it's taken me a long time and lots of patience to get to this point. I was very ill and nearly bed-bound when starting the medications. I don't know if I would have been desperate enough to start the Valcyte if that had not been the case. After 10+ years of steadily getting worse, I am finally heading in the right direction. Anyway, for me, the medications have definitely been worth it, but I definitely got much worse for a very long time before I began to get better. Also, I had no stomach difficulties with the medications, so it's been easier to tolerate. I always take the Valcyte with food including some kind of fat and I don't know if that helps. I also take it well-separated from my other medications. I read somewhere it's supposed to be taken with fat, and it seems to help with me.
     

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