valcyte/stanford update

Discussion in 'Fibromyalgia Main Forum' started by clo1, Apr 4, 2008.

  1. clo1

    clo1 New Member

    i just wanted to post that i was at stanford on monday 3/31 for the last battery of tests (thank god!) and here is what i learned in terms of the timeline for mid-april one of the team will call each of the 30 patients to tell us whether we were on valcyte or placebo...then on april 22 the trial doctors will meet, as a group, with the 20 valcyte patients and discuss "safety and efficacy" - meaning that they will tell us if valcyte works for this subset of cfsers and if it safe for this use...they may or may not tell us more on that day...and we are free to ask questions of course...then, the next day, when they meet with the placebo group, they will let them know the same info about safety and efficacy, and if it's a go, they will be offered the valcyte and all of the monitoring that goes with it for free...this is as much as i know at this far as publication of findings, i don't know anything but hopefully they'll tell us that on the 22nd...

    at this point i have realized that except for the absence of headaches and swollen brain feeling, i did not improve on the drug and other things have i will probably be called a "non-responder"...all the best, clo
    <br>[<i>This Message was Edited on 04/04/2008</i>]
  2. ladybugmandy

    ladybugmandy Member

    i clo. thank you for that information:)

    i just wanted to say that i have read quite a few articles regarding people who respond to treatment for CFS. all of them said that the 1st symptom to improve is cognitive function and that if this occurs, it is likely that you are on the right track in terms of treatment.

    dr. ablashi also told me this.

    if the swollen brain feeling and headaches are gone - and i know i sound like a broken record - maybe you need longer antiviral treatment..?

    just my 2 cents :-/

  3. sascha

    sascha Member

    first of all, i'm very sorry you appear to be a non-responder for many of your cfids symptoms. the fact that you had swollen-brain feeling does indicate you were on the valcyte, as i had that feeling for weeks and weeks, and it has just lately lessened to a large degree. not having headaches anymore maybe made it worth it? although you say other symptoms have worsened.

    it is not an easy road to take, but maybe you are glad anyway that you took the valcyte because otherwise you would always wonder...?

    i'm in week 14; am very weak and tired; some of the harsh valcyte symptoms have let up, but i am basically good for nothing and am just hibernating. i do one little thing and have to spend the next day in bed.

    i was glad to see your post- i am living in state of anxiety over how i'll come out of this six months on valcyte, and can't find much current information from people on the valcyte- i wonder where they all went.

    very best to you; may you find further help for the cfids- Sascha
  4. Timaca

    Timaca New Member

    You are so very faithful and kind to keep us updated on the Stanford research. Thank you.

    Since you had some improvements, I would be inclined to think that the valcyte did do something for you (we are assuming you were on the valcyte due to several reasons, including the drop in WBC). It will be interesting to see the results of your lab tests...and if the HHV-6 IgG titers dropped.

    I'm inclined to think that there are other pathogens in you that need addressing (that is the thought that I'm thinking for me too). For instance, my EBV is still slightly high, and I'm high as the lab measures for HSV1. Both of these viruses are better treated with valtrex.

    The same may be true for you. If you were on valcyte, it did help some, by knocking off the HHV-6. But, now you have other pathogens that need addressing in order to feel well. Hopefully, all the tests they ran at Stanford will identify what those pathogens are.

    I do know of someone who took valcyte for 6 months, felt better, but not entirely well. Relapsed 6 months off the valcyte, and has been steadily improving on valtrex.

    SO....hang in there. Valcyte is likely one part of the treatment plan.

    You are a gem for keeping us informed...

  5. slowhand

    slowhand New Member

    Hi clo1, Did you ever have an elevated liver enzyme while you were on Valcyte? Also,were you taking 3 pills (450mg) a day in the begining of the trial?
  6. ladybugmandy

    ladybugmandy Member

    good post! my doctor, dr. lerner, is adding valtrex to the valcyte regimen for ebv and my HSV1 is high as well!

  7. clo1

    clo1 New Member

    hi jam, thanks for that...that's a good analogy and i see how it parallels what some of us are going through...i can only hope that things will heal with time...all the best, clo
  8. clo1

    clo1 New Member

    dear sascha, thanks for your kind reply and i can sure relate to what you are going through...for me the headaches and the swollen brain feeling preceeded the valcyte and did stop within the first few months...i have absolutely no regrets about trying fact i feel very fortunate to be part of this trial...i have kaiser permanente insurance and they would have NEVER paid for i did get it for free with the world's best monitoring...and of course we will be learning a lot more as the weeks go by which will hopefully be helpful to all of us with, clo
  9. clo1

    clo1 New Member

    dear timaca, thanks for your note and i agree with you...there's probably more to treat than what has been done...i am very interested in pursuing the valtrex route now...i have tried acyclovir ( more or less the same as valtrex per dr. montoya and my primary MD)in the past and it did not help, but maybe now that the valcyte has hopefully done it's job, the valtrex could be more effective...i have always had very high titers to EBV...of course i have no idea yet what my titers did during the course of the trial, but will hopefully learn that are you these days?? warmest regards, clo
  10. clo1

    clo1 New Member

    dear slowhand, my liver enzymes were never elevated during the trial and for the first 3 weeks of the trial we were taking 900mg twice a day, which was then reduced to 900mg once a day for the rest of the six months...the most challenging adverse reaction for me has been my low white blood cell still is kind of low (3.4) as of last monday, and my red blood cells are also low (low hematocrit and hemoglobin)- i cannot recall the numbers; they are below normal but not a critical although i have been off of the valcyte for 3&1/2 months, i believe that my bone marrow has not fully recovered from the onslaught! all the best, clo
  11. clo1

    clo1 New Member

    dear sue, good to hear from you as always, and i still don't think i would ever restart valcyte unless there was some definitive proof that more would be better...somehow i cannot imagine that in my case...i promise that i will continue to update the board as more info is revealed, and how are you these days?? you sure are a loyal and faithful poster and i really appreciate your, clo
  12. ladybugmandy

    ladybugmandy Member

    thank you for asking, clo....:)

    i am not doing well at all. i am in my 7th month of valcyte under dr. lerner. currently, i am on antibiotics for a boil on my back and after that, we will add valtrex to the regimen.

    dr. lerner is a wonderful doctor. he really believes antivirals work and has a lot of i am keeping my fingers crossed.

    i have run into a few people who have had CFS a very long time as i have, and claim to have improved after years on antivirals.....i am desperately hoping that happens for me.

    until then, i am trying to be as patient as i can and rest a lot.

    i think we will learn quite a bit from the stanford study and hopefully make better decisions regarding our treatment in the future.

  13. clo1

    clo1 New Member

    dear sue, i am so sorry to know that you are still suffering so much with this DD...i am too and i am hanging onto some hope from your experience with dr. lerner...maybe valtrex will help us eventually?? i really feel like "dead woman walking" these days (sorry for the dark humor)...but that's the only way i can describe it...i'm so glad that you like dr. lerner...that's so, clo
  14. deliarose

    deliarose New Member

    I heard the brain was always the last thing to improve!
    Dr Lapp told me that, and I read it elsewhere. Don't have any sources, sorry.

    I sure hope it's that way. I am much better physically, and I would say the fog is gone, but the cognitive function is still MIA.

    I note that Rich Carson said he still has problems writing, although he can hike and run a company apparently!

    soooooooooo much confusion.............
  15. Timaca

    Timaca New Member

    I am better than I was prior to valcyte, but not as well as I was in late January. :-(

    I am hoping that adding some valtrex soon, and dropping the valcyte will give further improvements.

    Hugs to you, dear Clo,
  16. ladybugmandy

    ladybugmandy Member

    k. loomis told me that a valtrex and vaclyte combo is reported my some doctors to be beneficial. that is strange. how can the fog be gone but the cognitive function not be back?

    i am sure i heard that this is the 1st to improve from a few sources. i wonder what the real story is.

  17. chrissy12

    chrissy12 New Member

    I appreciate you letting us know about the stanford update. I know we are all waiting patiently to hear the results. I am really sorry you didn't improve on the drug. Hopefully, Dr. Montoya will come up with new findings or other ideas on how to help you. Will keep you in prayer.
  18. chrissy12

    chrissy12 New Member

    I am on week 6 of valcyte and I, too, have a very limited life. A walk to the mailbox seems to be my only daily activity. If I do go out for an errand, I am exhausted for days. I feel very weak, fatigued and I have the sick-flu like feeling. I also take valtrex for the EBV. I hope that as you continue, you start to feel better. I keep reading about week 16-18 where people started to improve some. Hopefully, that will be you..... Take care.
  19. clo1

    clo1 New Member

    hi deliarosa, i was just wondering when you started to see improvements on the valcyte, and did you also gradually improve after going off of it? thanks for any, clo
  20. deliarose

    deliarose New Member

    I was never on Valcyte. I am doing the Yasko protocol.
    Terribly sorry for the confusion. Shouldn't have posted on this thread.. just wanted to respond to Sue's comment.