CFS: Who Here Is On Valcyte? (And Who's Made Progress?)

Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, Mar 12, 2007.

  1. Slayadragon

    Slayadragon New Member

    Periodically people report interest in reading experiences of board members here who have tried Valcyte.

    I thought I would put together a list over everyone on the board who has used Valcyte or has fairly firm plans to use it soon, as well as all those people who have seen Dr. Montoya.

    That way, those interested can do a user search to find out how these folks are doing and what their experiences have been.

    I'm also going to list with askerisks people I recall having stated they had improved on the drug. If others have improved also, please let me know.

    This is what I've come up with so far. I'm sure I'm missing some people, and so please let me know if so. Note that many of these people visited the list only briefly early in their treatment, and so the rate of improvement may be much greater than it seems here.

    Best, Lisa


    Currently or Previously on Valcyte:

    * Improvements on the drug

    * empty2void (Dr. Montoya)

    7552 (Dr. Montoya)

    onestepatatime (Dr. Montoya)

    erica741 (Dr. Montoya)

    *cat003 (Dr. Montoya study)

    clo1 (Dr. Montoya study)

    amirin (Dr. Montoya)

    ocelopili (Dr. Montoya)

    013101 (Dr. Montoya)

    siebertesther (Dr. Montoya and PCP)

    * stovetop (Dr. Lerner)

    PGWS (Dr. Levine)

    iman (Dr. Levine)

    fm58 (Dr. Levine)

    foxglove9922 (Dr. Levine)

    * dahopper (Dr. Stevens, Dallas FFC)

    GKTLA (Dr. Holtorf)

    keke1972 (Dr. Levine)

    frankie78 (Dr. Enlander)

    chrislopez (Dr. Enlander)

    * rubyart (Dr. Lerner)

    * babs41 (FFC)

    hopeforcure (her husband is on Valcyte)

    yvettepz (her daughter is on Valcyte)

    * dhamma (she and her daughter both have used Valcyte)


    * karenfpetrucci (Dr. Guyer)













    * gardendi



    taradonelle (FFC)

    ladybugmandy (Dr. Leo Galland)













    * nancyanne62 (Dr. Peterson)


    patrickj (his friend is a patient of Dr. Montoya)



    *kathy662 (her daughter is a patient of Dr. Levine)







    Scheduled for Valcyte


    Others Seeing Dr. Montoya





    [This Message was Edited on 07/04/2009]
  2. ravenpaige

    ravenpaige New Member

  3. terrilynnb

    terrilynnb New Member

    Thanks, LisaP for all the work you are doing to get this research together and thanks to all of you who are sharing your info with us. I am wondreing if those of you who are using Valcyte and also those who are seeing Dr Montoya can shoare with the ret of us if you are primarily CFS or have accompanying FM pain? And if you all who see Dr M could give us more of an idea what profile of symptoms-CFS or CFS+FM he is finding are responding to the VAlcyte. Since so many of us are conviced that this is more than one illness, it would really help everyone to know if the people trying VAlcyte and also those responding to it are in the CFS classic fever, lymphnode, sore throat, brain fog category or those with exreme FM pain. any one willing to post their info and anyone willing to ask DR M when you next see him, would be so apredciated by all of us. Thanks everyone for being so caring and helpful to oneanother. Terri
  4. Forebearance

    Forebearance Member

    I'm glad you found us!

  5. pawprints

    pawprints New Member

    for putting this information together. For those of us thinking about the drug, it will help us and our doctors decide what the road may be like. You are pioneers!

    Do we have a list of the tests and labs our physicians should use to judge if we are good candidates for the drug?
    [This Message was Edited on 03/17/2007]
  6. pawprints

    pawprints New Member

    bump for a response
  7. GKTLA

    GKTLA New Member


    This message board fills up so quickly I'm surprised I found this post. I started my sixth day of Valcyte today and will be taking 450mg twice daily instead of once daily. Had my blood tested on day 3 but am still waiting for results. I'm supposed to have my blood tested today, too, but am waiting to see how I feel. I'm a big fainter and we can't seem to get my blood pressure up beyond 90/55. The Valcyte has made me feel more ill than usual and given me nausea and headaches which I don't usually have.

    I am on a huge protocol and taking many things. I can't say that any one thing has made a difference at this point.

    I'd be happy to share any information.
  8. dahopper

    dahopper New Member

    I am so sick today with severe fatigue (more than the normal for me) My whole body feels like I have been hit by a mac truck and I survived !!! I ache all over and my throat is sore which I NEVER have a sore throat. I feel weak all over and my nerves are shot !!! I hope this gets better. Can anyone give me any extra info and if this is all normal. Love, Debbie
  9. dahopper

    dahopper New Member

    Thank You for the info....yes I hope it gets better too. I just want to cry. LOL Love, Debbie
    All this is just not fare, my friends are all normal.
  10. gasolo

    gasolo New Member

    Started my 6th week on valcyte Saturday. Still feel crummy. Symptoms worse as compared to pre valcyte. Fatigue, shortness of breath, dizziness, brain fog and weakness predominate. A long time to be on a medication without obvious benefit.

    MY present dose is 900mg once daily. I'm still following the Montoya dosage schedule.

    I've been unable to find much info concerning when most people start to feel better. I did speak to Andreas Kogelnik, lead author of Montoya's paper on valcyte. He claims most patients made the most progress between the 6-12 weeks.

    [This Message was Edited on 03/20/2007]
  11. Slayadragon

    Slayadragon New Member

    That blood pressure will do you in. It would be better if you could get it raised, regardless of whether you're taking Valcyte. I was really sick when I was that low.

    Did you every try Florinef? I took between .1 and .2 mg at various times in my illness. My doctor said that if I could get to at least 110/70 it would help a lot. I found that to be true.

    The dose of .2 mg is considered high, and I think the main problem is considered to be bone loss. I've been taking natural progesterone (Prometrium) forever, and one of the advantages of that is that it's supposed to build bones. I had a bone density scan done a year ago, and my bones were in fine shape. (I'm 42 and have had CFS for 12 years.)

    If your blood pressure is that low, there's a good chance that your adrenals are in bad shape in general. My doctor thinks that supporting the adrenals is particularly important when enduring heavy die-off from antivirals, and based on my experience, I agree. You may want to have your cortisol and DHEA tested, and to support your adrenals in general. If eventually you can get your adrenals back in shape (which I did after a number of years), your blood pressure will go back up naturally probably.

    There's been a lot on the board over time about supporting the adrenals. Check bigmama2's posts---she's talked about this a lot. I may be able to bump up a post myself.

    I wouldn't suggest just starting adrenal support of any sort, by the way. Getting tested to know what are problems for you will help you to know what to do, since too much adrenal hormone of one kind or another is a bad thing.

    Best, Lisa

  12. GKTLA

    GKTLA New Member

    My doctor is Kent Holtorf in Torrance. I did see Dr. Teitelbaum in April 2005 as well. Long story about that.

    I tried Florinef for a week and didn't notice a difference but I'll try again. It's .1mg. Teitlebaum insists that Dexedrine is better at raising BP in adults and I take 5mg of that daily but all it really seems to do is make me anxious.

    I guess I need to add all the meds I'm taking to my profile.
  13. FM58

    FM58 New Member

    Well, I'm on week 5 of Valcyte; One dose of 450mg daily - I see Dr. Levine.

    This last week or so has been really rough. I've been having lots of flank pain & my Interstitial Cystitis symptoms have been acting up, so I thought I was having an IC flare. My uro even sent my urine for a culture & started me on an antibiotic. Now, she sent me for an abdomanal CT scan to check my kidneys.

    I should have the results on 3/22

    Now, I am wondering if it is herxing from the Valcyte. I feel really crummy. In addition to those symptoms, my out of balance/ dizziness is really aggravated. Of course I don't even have to mention pain & fatigue!

    I've got to make a trip into the city to get a Vitaman Drip in Dr. L's office. I know that helps me.

  14. Slayadragon

    Slayadragon New Member

    Glad to hear from you.

    Interesting that Dr. Levine has put you on a low dose of Valcyte. 450 mg, one time per day, right?

    I was under the impression that she had mostly been using Dr. Montoya's protocol (1800 mg per day for the first three weeks, then 900 mg per day).

    Did she comment on the dosage to you or explain her reasoning?

    I've not heard about many people witth low dosing on that drug (although my doctor says he has prescribed even lower doses--I'm not sure under what circumstances) and so am not sure if you're getting die-off.

    It sounds like that drug is strong enough that it's probably going to give you some response though.

    Please continue posting about how you're doing as time goes on.

    Best, Lisa

  15. frankie78

    frankie78 New Member

    hi everyone!
    i take 900mg once a day in the morning. i see dr. enlander in nyc.

    i was so bad off when i started treatment i can't really comment on many symptoms in the beginning - since i couldn't get mush worse i woulnd't have noticed much. i had a very bad relapse at the end of january. when i started valcyte i was still at about 5%, energy level-wise. could make the 10 steps to the bathroom a few times a day but that's all. couln't hold up a book to read.

    but symptoms i did notice: i was very sleepy for about a week, and then sleep became harder; would wake up all the time. it helped when i started to take the valcyte in the morning instead of at night. i also had some emotional days the first few weeks but those dissipated. i have been having shortness of breath and chest pains throughout the last 2 months. and also i have been having achy (sp?) legs, especially knees. i do not have FM. and this is really strange because i'm not walking anywhere, usually.
    i've been out of the house 4 or 5 times in the last month or so. it usually doesn't go well but i love to see the sky, so i keep trying.

    lately i have been feeling a bit better, but the progerss is slow, and i'm not sure if it is the valcyte or not. i am at about 25-30% most days, less if i pushed myself the day before. i can walk aound my apartment now, which is nice, but i still can't sit up or stand for any period. i feel nauseous and dizzy when i sit. i need to be almost completely horizontal to be comfortable. is anyone else like this?

    i had bloodwork done last week and i will find out the results on thursday; will let you all know.

    love to everyone!

  16. frankie78

    frankie78 New Member

    hi denise!

    i'm not sure what exactly made de. enlander perscribe valcyte for me. i had the relapse right after i saw him, so i went from 45-50% energy-wise to 0-5%, and was stuck there. i had been on the immunoprop and lectrolye for six weeks and was making no progress when he suggested the valcyte.

    i like dr. enlander as well, but truthfully i don't know how much those supplements are helping. maybe progress will be slow for me. i know he does have many patients on valcyte, and the nurse said many were doing very well. so i have fingers crossed...

    it sounds like you had an interesting career. i used to be very artistic as well, but i can't really sit up to paint or do collages any more. hopefully soon.

    keep me posted.

    [This Message was Edited on 04/30/2007]
  17. jasminetee

    jasminetee Member

    Hi Frankie,

    I'm on my 6th week or so of Valcyte, started at 1800mg and then moved to 900mg after 3 weeks. I am very much like you except I don't have pain in my knees very often. I have to be horizontal most of the time too although even that is often not enough and I still suffer extreme pain, dizziness, illness symptoms while laying down, just not as bad as when I'm up of course. I can no longer do any crafts or play music either.

    It's so hard being this bedridden. I was only a bit better than this before i started the Valcyte. I'm definitely out of breath more often now too.

    My CFS started with sudden viral onset and I had elevated EBV titers so I think I'm a good candidate for Valcyte.

    Good luck to everyone that's trying Valcyte!!

    [This Message was Edited on 04/30/2007]
    [This Message was Edited on 04/30/2007]
  18. Lichu3

    Lichu3 New Member

    I've been reading Sue Jackson's blog and she has written that she is off of Valcyte now and is on Valtrex. She wrote that her EBV titers were "borderline" and it's not clear from the blog if her HHV titers were high. She has some decrease in WBC and her primary doc recommended stopping the Valcyte. Dr. Levine then switched her to Valtrex.

    Also, there's a poster named nancyanne62 (see the recent post titled "lichu3 and swedeboy") who may be on Valcyte per her old posts.
  19. Lichu3

    Lichu3 New Member

    I've been reading Sue Jackson's blog and she has written that she is off of Valcyte now and is on Valtrex. She wrote that her EBV titers were "borderline" and it's not clear from the blog if her HHV titers were high. She has some decrease in WBC and her primary doc recommended stopping the Valcyte. Dr. Levine then switched her to Valtrex.

    Also, there's a poster named nancyanne62 (see the recent post titled "lichu3 and swedeboy") who may be on Valcyte per her old posts.
  20. frankie78

    frankie78 New Member


    i've never found anyone else with this symptom we have - needing to be horizontal. have you always been like that since CFS started for you? do you have any ideas about its cause? before my most recent relape (jan.) i could go out for dinner or visit friends. but not now. i wish i knew what was causing it.

    good luck with your treatment! keep us posted.


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