quick poll for current and former VALCYTE users please

Discussion in 'Fibromyalgia Main Forum' started by drewmanman, May 18, 2008.

  1. drewmanman

    drewmanman New Member


    Hi everyone--

    First I want to thank Bigmama2 for taking a poll among Valtrex users, since Valtrex may be a therapy I'll be trying in the future. It is more likely, however, that I will begin therapy on VALCYTE, so I'd like to take the same poll among people who have tried VALCYTE. Thank you.

    1.how long have you been sick w cfs?
    2.how long were you on VALCYTE?
    3.what dose?
    4.did you have a worsening of flu like symptoms/herx?
    5. did your viral titers go down substantially?
    6. did VALCYTE help you?
  2. ArgyrosfeniX

    ArgyrosfeniX New Member

    Hey Drewmanman,

    I'm in the middle of my 4th week on Valcyte, thought I'd answer your poll anyway. ;-)


    1.how long have you been sick w cfs? - 19 years

    2.how long were you on VALCYTE? - so far, 3 1/2 weeks.

    3.what dose? 3 wks @900mg twice daily, now @450mg twice daily.

    4.did you have a worsening of flu like symptoms/herx? - I had something that started about 3 days into the treatment and I've spiraled down to crash levels for a few weeks now since then. Just starting to feel a little scrap of energy yesterday and today.

    5. did your viral titers go down substantially? - Haven't had them checked yet.

    6. did VALCYTE help you? - Results are pending, but after getting the herx symptoms and feeling that my lymphs are reducing in size for the first time in over a decade, I'd say it is working for me.
  3. erica741

    erica741 New Member

    1.how long have you been sick w cfs?

    I have been sick almost 2 years. I was sick about 1 year when I started Valcyte

    2.how long were you on VALCYTE?

    6 months

    3.what dose?

    1st 3 weeks: 900mg twice a day, then 900 mg once a day


    4.did you have a worsening of flu like symptoms/herx?

    Yes, felt much worse for the first several months. Improved significantly mid-treatment, but continued to herx and and off through the end of treatment.

    5. did your viral titers go down substantially?

    No - In fact my EBV is higher now than when I started Valcyte.

    6. did VALCYTE help you?

    No, but I think I should have stayed on it longer. Dr. Montoya wanted me to stop after 6 months, otherwise I would have continued since I was still pretty sick at 6 months.
    I also was recently diagnosed with lyme, and started antiobitics 2 weeks ago (already feeling better).
  4. NicolaG2

    NicolaG2 New Member

    This poll will actually be good to keep bumped as quite a few people ask for experiences.

    1. I've been sick for 4 years with a 1 year remission after the first 18 months. Currently 14 months into relapse.

    2.6 months on Valcyte.

    3. 900mg 2 x per day for 1st 3 weeks,then 900mg 1x per day.

    4. No herx, no worsening of symptoms.

    5. Uk seems unable to test for HHV6 and EBV results are only positive or negative. Have been unable to get EBV titers. So, no idea what my titers have done.

    6. I believe it got me on my feet somewhat. Am now working on bacterial infections.

  5. deserella

    deserella Member

    1.how long have you been sick w cfs? 8 years

    2.how long were you on VALCYTE? June 14th,2007-Present

    3.what dose? 900 mgs a day

    4.did you have a worsening of flu like symptoms/herx? Yes. I continue to have these symptoms. It has been pure hell at some points to be honest, but thanks to a wonderful support system (family, friends, immunesupport) I've maintained my sanity!

    5. did your viral titers go down substantially? Not substansially yet. My doctor doesn't do them through Focus Labs either, so they may not be as accurate.

    6. did VALCYTE help you? I have periods where I feel better so that gives me hope. It's hard to tell. Some people say they felt great a few months after they stopped valcyte so I hope I'm one of them!
  6. MissyHamilton

    MissyHamilton New Member

    I am just curious on what is the difference between Valcyte and Valtrex?
    I have been taking Valtrex for eight years now. I have never heard of Valcyte.
    Thank you and have a great day!

    Missy
  7. yogakitty

    yogakitty New Member

    Thanks for starting this poll - I've been looking for something like this. My answers:

    1. Over ten years
    2. 11 weeks
    3. 450 mg, once a day
    4. Absolutely - tho they didn't start for about a month.
    5. Haven't received results yet. Mine were pretty high before starting Valcyte, higher than all but one person in the original Montoya group.
    6. Not yet but I'm hopeful.

    I'd like to suggest a few more questions to answer if you guys don't mind:

    7. Did you have rapid onset of the disease?

    (I didn't).

    8. Are you experiencing nausea or unusual food issues?

    (I've been nauseous and can't stomach anything green - altho I usually *love* veggies. I seem to only be able to eat pasta, potatoes, and orange foods like oranges and orange peppers. I know - this sounds weird. I'm also wondering if what I'm actually craving is the butter I put on pasta, etc. as I read that the Valcyte needs fat to bind to).

    9. Are you experiencing skin burning?

    (Not too much more than usual for me tho I note a lot of people have this symptom).

    10. Are you experiencing tongue isses?

    (Again, I've noted this on the boards but don't have this symptom).

    11. Are you experiencing severe chest pain?

    (Very true for me).

    12. Has the quality of your pain changed?

    (Yes. One main example is that I now have extreme pain in my cheekbones. Before I had the most extreme pain in my eyes).

    13. Has your cognitive function gotten even worse?

    (Yes siree for me!)

    All for now. Thanks much to all of you. I've really learned a lot from reading your posts & wish you all rapid recovery and good health!

    -Diana
  8. ALEESLP

    ALEESLP New Member

    1. 2 years 3 months
    2. so far 13 weeks
    3. 900 mg twice daily for 21 days and now 900mg once daily
    4. YES! First week was bad and then I felt better for about one week then downhill. I have had multiple side effects: gastro, headaches, fatigue, skin problems. I do feel that my cognitive function is better.
    5. Have not been checked yet by CFS doctor.
    6. Cognitively yes. Hopeful that I will see more after the 6 month course of the drug.

    Angela
  9. ladybugmandy

    ladybugmandy Member

    hello fellow canadian:)

    valcyte is a broad spectrum herpes antiviral...valgancyclovir. it acts on HSV, HHV6 EBV, and CMV. it is newer than valtrex. it made CFS news recently when stanford's dr. montoya claimed that some CFS patients recovered after 6 months on the drug.

    valtrex (valcyclovir) does not really help well established HHV6 or CMV infections but does work on EBV and HSV. valtrex is much less toxic than valcyte.

    hope this helps:)

    i am confused...i read your post from last month saying you were newly diagnosed...but you mentioned you have been taking valtrex for 8 years!

    if you have been on it 8 years, have you improved on this drug?? are you seeing a CFS specialist? how did your CFS start?

    thank you!

    sue
    [This Message was Edited on 06/24/2008]
    [This Message was Edited on 06/24/2008]
  10. 013101

    013101 New Member

    Here are my answers

    1.how long have you been sick w cfs?

    Since June 2001 -- I had sudden onset after a viral infection

    2.how long were you on VALCYTE?

    One year
    3.what dose?

    900 mg twice a day for three weeks; 900 mg once a day until six months when Dr. Montoya had me go up to three 450 mg pills for three weeks and then drop back to 900 mg once a day again

    4.did you have a worsening of flu like symptoms/herx?

    I had very strong herx's both after starting Valcyte and after Dr. Montoya had me raise the dose again at six months.

    5. did your viral titers go down substantially?

    No

    6. did VALCYTE help you?

    No. I had improved about 40% at six month. Dr. Montoya had me raise dose to try and get me off the plateau I'd reached. After the herx that was set off by that, I never regained my initial improvement and, after a year, he had me stop taking it. At that point (about six months ago), I was worse than when I'd started the Valcyte. Now I'm at about the same level I was before starting the treatment (housebound and often bedbound).

    Best of luck to all.
    Toni