Question for Valcyte users

Discussion in 'Fibromyalgia Main Forum' started by Bluebottle, Sep 30, 2007.

  1. Bluebottle

    Bluebottle New Member

    Please can you tell me what dose you are on, & whether the dose changes or stays the same? Also, how long are you going to be taking it?

    I'm in the UK & am thinking of importing it from the US as it's not being prescribed here for CFS/M.E. I need to get the dose right as importing it will cost a lot of money. thank you!
  2. ladybugmandy

    ladybugmandy Member

    hello. the dose is 2 pills twice a day for the first 3 weeks, and then 1 pill twice a day for however long you plan on taking it. some doctors prescribe it for 6 months, some 9 months, some 1 year, some even 3 years!

    the pills are 450 mg each.

    good luck and please keep us posted! have you had your antibody levels checked?

  3. Timaca

    Timaca New Member

    900 mg twice a day for 3 weeks (I took it at Breakfast and dinner---it must be taken with food)

    Then 900 mg once a day for a total of 6 months.

  4. erica741

    erica741 New Member

    Is what Timaca described. After the 1st 3 weeks, my doctor also specifically told me to take all 900 mg (2 450 mg pills) at once, so that is what I've been doing.

    The minimum treatment is for 6 months, but some doctors keep patients on longer or increase the dosage if there is not sufficient improvement.
    [This Message was Edited on 09/30/2007]
  5. Bluebottle

    Bluebottle New Member

    Thank you all for your help, that's very kind.
  6. jasminetee

    jasminetee Member

    Let us know if you're able to get it and how you fare on it.
    I hope you can get it and that it helps you.

  7. Slayadragon

    Slayadragon New Member

    Not all doctors using Valcyte go with Montoya's protocol though. For instance, Dr. Martin Lerner has been using Valcyte (apparently successfully) for longer than Montoya. based on the info on this board, he often uses it on patients at a steady dose (i.e. 900 or 1350 mg over the entire period) and keeps people on it for a year or more.

    My doctor seems to have found success in starting patients on Famvir (to kill some of the viruses) and then switching them to Valcyte (to knock off the more resistant ones). He thinks that die-off symptoms are lower this way, meaning that the patient's own immune system tends to come "online" faster. He states he's had success with this method, and at least three of the people on this board who have had the most success with Valcyte (Peterson's patient nancyanne62 and the FFC patients babs41 and dahopper) used it this way.

    To my knowledge, Montoya has used Valcyte _only_ according to his own protocol (1800 mg at first, then 900 mg). I don't see how he can know that this is the _best_ way to use it, therefore.

    In addition, it seems that at least some of the patients that Montoya treated in his early studies used other antivirals before switching to the Valcyte. (empty2void here is one of them.) This is not reported in his studies, but is important since the patients referenced above (and my doctor's patients) generally experienced only little improvement from Famvir/Valtrex but fast and substantial improvement after switching to Valcyte.

    Unfortunately, Montoya does not report in his initial study how many of the patients took other antivirals before starting on Valcyte. Insofar as a greater percentage of his current patients have not taken other antivirals in the past (he doesn't seem to be reporting this either), this could explain why they are not getting results that are as fast (e.g. are taking many months rather than just several weeks) or as dramatic.

    How to best use the drug thus seems to me extremely unclear at this point.

    Obviously this makes things more confusing than just going with the "Montoya protocol", but I still think more information always is better than less.....

    [This Message was Edited on 09/30/2007]
  8. gardendi

    gardendi New Member

    I just read you muct take it with food? Do you all do that? I take it along with my other med when I go to bed.
  9. ladybugmandy

    ladybugmandy Member

    yes! you must take it with food to help absorption. your pharmacy should have put a "take with food" sticker on the bottle.

  10. Bluebottle

    Bluebottle New Member

    Thank you Lisa & everyone. I don't know if I'll be allowed to import this, it may be stopped at customs, but it's worth a try. It won't be available over here for a couple of years, if at all. The psychiatrists here have a very tight stranglehold on all treatment for CFS/M.E.
  11. ladybugmandy

    ladybugmandy Member

    hello. i just looked it up and valcyte should be availble in the UK. you can call Roche at +44 (0)1707 366 000.

    good luck!
  12. Bluebottle

    Bluebottle New Member

    Thank you Sue, I won't be able to buy it in this country without a prescription. It's not licensed for use with M.E./CFS or fibro so I won't be able to get a prescription.
  13. Lichu3

    Lichu3 New Member

    I think Montoya's dosages are based on the treatment of CMV retinitis where 1800 mg is the starting dose with it tapering down later on. This is a protocol which has been tested extensively before so he probably feels comfortable using it.
  14. clo1

    clo1 New Member

    Hi there...I am not aware of how pharmaceuticals are regulated in the U.K. but they are strictly controlled here in the states by the F.D.A. (Food and Drug Administration), and Valcyte has not been approved for use in ME/CFS either...however doctors here can prescribe meds for "off label" uses if they think there is a chance the med might be helpful, and as far as I know, only about 30 docs in the whole country are willing to do this with Valcyte it possible that this could be the case in the UK and that you need (easier said than done I'm sure) a referral to a doctor who would be willing to talk to Dr. Montoya and try his protocol?? all the best...
    [This Message was Edited on 10/01/2007]
  15. ladybugmandy

    ladybugmandy Member

    bluebottle....clo1's idea is good! perhaps you can find an open-minded doctor in the UK who would follow montoya's protocol? i know dr. jonathan kerr in London is a prominent CFS specialist.

    also, i think Montoya sometimes talks to doctors on the phone about specific cases

    please keep us posted and good luck!

  16. sickofcfids2

    sickofcfids2 New Member

    It would have saved me the last year of complete debilitation and money wasted and spent on treatments that didn't work. I have an excellent physician here in AZ who is open to trying anything that will help me as I have suffered a very long time from CFIDS/ME (at least 10 years if not longer) as well as fibromyalgia (diagnosed by eight or nine specialists much to my horror as I kept trying to, like other health problems, will that away over the years).

    I have been on 900 mg of Valcyte for three days and felt a difference of increased energy from the first day, which surely cannot be possible, or can it?

    Valtrex, over a course of weeks or months beginning five to six years back, initially seemed to help (by initially, I mean that I began feeling a bit better after a high dose for a week after starting the first "trial" by my then-physician and me, the feeling of "better" which didn't last more than a few days). Since then, I have been off and on Valtrex, but it didn't seem to work as well as the first time as to giving me increased energy, although it did reduce or eliminate my severe night sweats (that I have had off and on -- but mostly on -- in my life since age 21) and seem to stop the cold sores I seem to get constantly on my mouth and in my nose if I am not on an anti-viral (my mother gets them very badly too and has been diagnosed with Multiple Sclerosis).

    Valtrex seemed to give me a little energy boost and not mess with an arrhythmia I developed that the Adderall XR I have been prescribed for years can worsen but which I still need and have needed, or something similar, not ony for out-of-control and worsening A.D.D. I experienced about a decade ago but also to prevent me from being bedridden 24/7 for the last decade. I have friends and relatives who I'm sure would help me if they could but are either too ill themselves to help or are working so many hours they cannot even properly care for themselves, their homes and/or their health unless each one of them had two non-human clones.

    In any case, I asked my physician if 900 mg is the right dose, because I have waited for so long without hope ... I'm 46 years old, and according to your post, a higher dose might be better.

    Can you post on here within the next few days to let me know? Thanks.
  17. Timaca

    Timaca New Member

    go to I think there is info there about valcyte dosage...certainly different patients post their dosages in the patient's forum.

    Best, Timaca
  18. ladybugmandy

    ladybugmandy Member

    hello. i have had CFS for over 15 years. i take 1 g of valtrex 4 times a day and 450 mg of valcyte every 48 hours.

    i have elevated EA titres for EBV and elevated titres to HHV6.

    my doctor would like to put me on a higher dose of valcyte buy my liver enzymes keep going up.

    i tried montoya's protocol for 6 months but it did not work.

    under my current doctor, dr. lerner, i am taking both valcyte and valtrex, and am now about 20% better.

    good luck:)