Good friend is a patient of Dr. Montoya, on Valcyte right now

Discussion in 'Fibromyalgia Main Forum' started by patrickj, Jan 16, 2007.

  1. patrickj

    patrickj New Member

    Hey all,

    A good friend of mine is a patient of Dr. Montoya. She began treatment on Valcyte in November. They started the medication at a really high dose (1800mg Valcyte I believe) for three or four weeks. During this time she had her blood drawn twice per week to make sure no issues came up. Then they lowered the dose to 900 mg. She got seriously ill on the protocol at around week three. I am talking MAJORLY sick. They told her that some patients have had such severe reactions to the drug at or around week three that some have nearly been admitted to the hospital. Apparently the reaction is a good sign. The improvement is supposed to happen after the worsening.

    She is still dealing with the issues that started week three and it is now week eight. Her parents have stayed home from work to help her with walking, showering, etc. The drug is definitely not for the weaker types to take.

    Other things-
    Not one of Dr. Montoya's patients has had problems with bone marrow issues or toxicity issues so far. He is very vigilant to check for problems.When on this protocol patients get blood drawn once per week when the dose is lowered to 900mg/ day. (And twice when on the higher induction dose). You will be a pin cushion!

    As I mentioned, my friend is approaching her 8th week and so far the treatment has been hellish for her. There are no "lighter days" or "easier times" so far. Everyday has been very difficult. She isn't feeling better yet but we hope it is worth it in the end!! (She's been sick for over four years so it's safe to say it will take time for her to get better).

    We'll see what happens.

    Good luck to all of you.

    PJ

  2. Slayadragon

    Slayadragon New Member

    Thanks for the up-close-and-personal report. It's the first one I've heard about one of Montoya's patients.

    This is consistent with what my doctor has told me about Dr. Montoya's treatment approach and lack of problems thus far with bone marrow.

    For a discussion of my doctor's own approach to using Valcyte, see my thread "A Strategic Approach for Getting Truly Well."

    Do you know how long Dr. Montoya anticipates keeping her on the drug?

    I hope that your friend recovers or at least is substantially helped (in the short-term and long-term) by her treatment.

    I would like to ask that you keep us posted.
  3. pw7575

    pw7575 New Member

    Thank you for posting about your friends treatment with valcyte. Sounds like it is no picnic, but then again neither is CFS. Hopefully the outcome will be compeletly worth it.

    I wish her the best of luck!

    PLEASE keep updating us and let us know what the outcome is for her. I think so many of us would be very interested in hearing about her treatment.

    Thank You!
    Pam
  4. shar6710

    shar6710 New Member

    I'm curious if you know how bad your friend's symptoms were before she started her treatment. Was she in a bad crash or was she doing relatively well?

    The 3 week thing sounds familar, maybe Lisa mentioned it?

    Good luck to your friend.

    Shar
  5. winsomme

    winsomme New Member

    this is interesting.

    it is the first i have seen about an increased dosage for the first month.

    in the reports that i have seen they only mention the 450mg 2X a day dosage.

    i wonder what the regimen is for the study that they are putting together right now.

    i wonder if we call the HHV6 Foundation if they would know the dosage for the Stanford study that is currently recruiting patients.

    does anybody have any ideas about how we could find that info out?

    thanks
    bill
  6. Slayadragon

    Slayadragon New Member

    Please read my post called "A Strategic Plan for Getting Truly Well", near the top of the board right now.

    It mostly describes my own doctor's approach to using Valcyte and other AV's, but discusses Dr. Montoya's reasoning for using the big dose at the beginning also.

    The information on Montoya is several paragraphs down.

    Basically, he's trying to kill off as much as possible as quickly as possible, in order to prevent resistant strains from developing.


    [This Message was Edited on 01/16/2007]
  7. Slayadragon

    Slayadragon New Member

    I'm not sure that length of illness has anything to do with length of time to get better, though.

    PJ, is your friend doing anything to support her adrenals?

    A DHEA test plus consideration of adrenal extracts may be in order.

    My experience with getting milder but still significant effects on Famvir suggest that the adrenals are of key importance in terms of surviving these AV's.

    My doctor agrees with that. And Jolie's experience with Valtrex certainly suggests it as well.
  8. patrickj

    patrickj New Member

    Hi there,

    I don't know if there is a relationship or time ratio between length of illness and how quickly someone gets well on the AV's. Some of the articles talk about one person feeling better after a few weeks while another was on the drugs for more than six months. It's hard to know. She plans to ask more about this when she sees him next. In the end it seems like this is all new territory and there are way more questions than answers. If anyone has input on time frames of AV's to feel better, please share it.

    I am not on here a lot but will be glad to help when I can.

    I came onto this board (her mom told me about it) to read posts about being supportive of friends who are dealing with severe debilitation and illness. There is lots of great information on here!

    My friend was one of the most active, educated and involved people I'd ever met in my life and now she is practically lifeless. It's so scary to watch.

    Thanks all,
    Pj

    PS Lisa, yes she is doing things to support her adrenals. She has a little cabinet of supps to help her through this time.

    [This Message was Edited on 01/16/2007]
  9. elliespad

    elliespad Member

    I just read in another post by MeZombie, that Dr. Montoya received a $1.3 million grant by Roche (pharmaceuticla company that makes Valcyte).

    While I'm very grateful for any studies being done, ya gotta wonder about the results when that kind of money is being funded by a drug company.

    Please pass this tidbit of info along to your friend or her family, it may prove useful at some point. And I wish her a complete and speedy recovery.
  10. karinaxx

    karinaxx New Member

    Patrick j.

    I just want to send you a big thank you in the name of all CFIDS sufferers: what a friend you are!!!!!!!
    I wish I had somebody like this.
    It is such a relieve, when you are suffering from this illness, to have actually somebody caring enough to get informed.
    And thank you for coming here and letting us know. It is up most important that we do get this first hand accounts and are fully and truly informed. Too often this head line accounts of remarkable improvement are just head lines and the other side of the story is left untold.

    Thanks again
    And keep as updated if you can
    karina

    ellispad, good point , had the same thought.
    but on the other hand, without this kind of pharma involvment we will not have any kind of trails. after all, our world is based on profit.
  11. Forebearance

    Forebearance Member

    Is it really necessary to practically kill patients in order to heal them? I worry about the suffering that people go through.

    What's wrong with the low and slow approach to taking anti-virals? I know it takes longer, but it's so much easier on a person.

    I hope your friend feels better soon, PJ. Thank you for sharing that info!

    Forebearance
  12. monicaz49

    monicaz49 New Member

    i agree forebarence.
    Pls keep us posted on your friend. Did she have high ebv and hhv6 titers?
  13. Slayadragon

    Slayadragon New Member

    I'm glad to hear that Dr. Montoya is giving thought to supporting his patients' adrenals and other potential problem spots. That makes me think that his likelihood of achieving success is pretty high.

    Please thank your friend for her determination. What she's doing has the potential of being for the benefit of many of those with CFS as well as herself.
  14. sumcmen

    sumcmen New Member

    Would you mind telling us if your friend suffers from any fibromyalgia type pain or just severe fatigue?

    Thanks.
  15. foxglove9922

    foxglove9922 New Member

    Roche site says 2 450 mg of Valcyte a day for the first month and then taper down to maintanence dose of 1 450 mg of Vlactye 2 times a day.

    Foxglove
  16. sturg1

    sturg1 New Member

    PJ, I too am interested in how your friend's treatment comes along. I am sorry that she has suffered so much. My prayers are that she gets stronger each day.

    I submitted my info to the HHV6.org site. I live about 3 hours south of Stanford, so I don't think I'll be accepted into the study.
    Please keep us posted when you can and give her our positive thoughts.
    Take Care,
    Tracy
  17. Slayadragon

    Slayadragon New Member

    I wonder how long Dr. Montoya's patients tend to stay on the drug.
  18. mezombie

    mezombie Member

    The most recent e-mail bulletin (1-17-07) on this site has an abstract of Montoya's prelimary Valcyte study as published in the Journal of Clinical Virology (Jan. 2007). Among other things, it reveals that some patients took Valcyte for six months. The entire article is available for a fee.

    Just go to the top of this page, click on "E-mail Bulletin", then "latest e-mail bulletin", and click on "abstracts of HHV-6 and CFS..."

    You will also find several other interesting article abstracts on the role of HHV-6 in CFS in this section.

    [This Message was Edited on 01/18/2007]
  19. patrickj

    patrickj New Member

    I'm glad this can help some people. Wakemeup, I am sorry you're dissatisfied with the post. Your comments really took me off guard. I will try to answer your questions. My friend has a case of severe CFIDS and yes she was positive for HHV-6. She also has very low NK cell count. The treatment is set to go for six months. Without question she started on 1800mg/ day for the first three weeks then tapered to 900mg for the remainder of the six months.

    I'm sure over time more people who are being treated with Valcyte will come on here and provide more insight.

    I hope there's more support and less criticism. Patients sure need it and so do those who take time out to try and help them.
  20. patrickj

    patrickj New Member

    http://www.hhv-6foundation.org/pdf/MontoyaAbstract.pdf