The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Valcyte - what to expect ?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by SunMoonsStars, Feb 4, 2018.

  1. SunMoonsStars

    SunMoonsStars Senior Member

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    What was your experience with valcyte as far as tolerability and side effects ?
    Any advice on what to expect
    for activated HHV6 treatment?

    Also what other drugs have you used that helped with HHV-6 reactivation?

    Thank you
     
    Last edited: Feb 4, 2018
  2. keenly

    keenly Senior Member

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    AHCC and Monolaurin are great
     
  3. Learner1

    Learner1 Forum Support Assistant

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    I have been on 1.8g Valcyte for 8 months and have had a good experience with it. My ME/CFS symptoms have steadily improved on it, though it took about 6 weeks to notice a difference.

    My doctor has wanted "safety labs" every 3 weeks to monitor my kidneys and liver. My GFR has been lower, but still normal and AST and ALT were a little high for 3 months before normalizing. I also take a lot of liver support nutrients.

    And I take biofilm busters - Biocidin, EDTA, Lumbrokinase, and Priority One Biofilm Phase-2 Advance.
     
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  4. RUkiddingME

    RUkiddingME Senior Member

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  5. SunMoonsStars

    SunMoonsStars Senior Member

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    Best advise while on high dose valcyte?
    Take with food I read.

    Has the community of ME / CFIDS tolerated this drug well overall ?

    Any feedback appreciated
     
  6. jstefl

    jstefl Senior Member

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    I took Valcyte for 10 Months back in 2008. I was very fortunate to be able to take it without any side effects. At the time I documented my usage on the HHV-6 Foundations website. Those entries seem to have disappeared in the intervening years, but there were almost as many stories as there were people. Many were not able to tolerate Valcyte at all, and some were fortunate to have no problem with it. I was careful to work with my doctor and have regular blood tests during this time.

    Valcyte was a life saver for me. Within a week of starting Valcyte my headaches started diminishing. When I started, my BP had dropped to 80/50, and my pulse was 50. I was barely able to stand, and had to be very careful that I didn't faint. I monitored my BP all during the 10 months, and at the end I was able to stop taking my blood pressure medication, and haven't needed it since.

    My energy level was only slightly improved, but there were many other improvements that greatly increased my quality of life. That improvement has lasted 10 years so far, and I am thankful every day for the benefits gained from Valcyte.

    John
     
  7. SunMoonsStars

    SunMoonsStars Senior Member

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    Thank you for feedback. Glad to hear some success without trouble and tolerating it well. With reports that many didn’t tolerate it I wanted to be prepared.
    Especially bone marrow suppression possibility.

    I’m on day five of 900mg am and 900 pm and taking Thymus liquid cellular Peptide and Liquid Mushroom extract and Gcmaf and hope those support immunity well enough during this process. Also on hepapressin injections.

    So far I have had some nausea and extra blurry vision and headaches but not to the point I am concerned.

    My HHV6:1280 and CMV 19.6 1.1 is +
    And all four EBV titers high and Parvovirus 19 - you know the drill !!!

    My spleen and liver have hurt for 3 years after a full on attack of Meningoencephalitis and mono relapse symptoms all at once within a couple months after a trip I took. I still don’t know what happened but it got quite serious and ivig was used to keep me out of running to ER and doctors every other day. Family had to move in for a year to help me manage. I won’t list all the acute symptoms that can but it attacked my organs and spine and brain and nerves and skin and really ravished me and was what I call like a monster taking over and eating and attacking all my systems.
    I’ve never heard of anyone having this happen and my neurologist said he had only identified it because in all his years of practice ( he is about 60) he had 1 patient demonstrate with the same thing.

    Ivig was only thing he knew of and immunologist review backed up the need. He willing to do Valtrex for ebv IGM that still is high but for three years nobody looked at other viruses. Recently I got help from ME doc and we are treating the whole picture better.

    At day 5 notice my spleen and liver are not in constant aching pain. We had increased ivig last month so it also may be due to that. The labs will be the big message that this drug is working. Even while on ivig I would feel the waves and surges of symptoms as without ivig the whole attack would come in waves with symptoms all surging together peaking and then calming some - repeating hourly at first then extended out to every couple days.

    It’s only been 5 days but I sense things are backing off. First sign is spleen and liver and spine and skin burning and bone pains.
    Heck I would be happy to go back to old days of debilitating fatigue without all this crazy acute symptoms. That’s all I am hoping for. More would be great but this has been horrid and a daily suffering situation that is ..................
    Cant find the word !

    I hope have the success that pulls me out of this forever like some others have reported and were so happy to have had the valcyte treatment.

    Blessings to all.
    Thank you for the support here.
    This condition ME / CFIDS is so extremely difficult.
     
  8. Learner1

    Learner1 Forum Support Assistant

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    What a story! 5 x 900 is a lot, but you've got a difficult issue. Are you still on IVIG? I have parvo, too, and it send to be good for that.

    In addition to my ME/CFS doc, I have an excellent functional med doc who works at keeping my liver happy. I've had issues with high serum ferritin and AST/ALT in the past.

    In addition to a customized methyl protocol, he's had me on curcumin, milk thistle, B5, vitamin C, and NAC, and I get IV glutathione and molybdenum.

    Do you know how well your gall bladder works?

    I agree, this is the most difficult thing I've ever done, but sounds like you've been making good progress. :thumbsup:
     
  9. SunMoonsStars

    SunMoonsStars Senior Member

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    @Learner1
    Thanks for the response. Yes still on ivig. And I have function and ND help too. Luckily we have my liver doing well.
    The hepapressin helps and herbs and glut and liver cellular peptides etc.
    Have myth supports going too. I do Ozone therapy too gosh I’m trying.
    A German doc loves ABM mushrooms and doing and he suggested Stronger Neo from Japan. Even ordered up that.
    Gcmaf yougurt and cream. Thymus cellular therapy.

    I hope ivig helps parvovirus. I seem to have every single virus in a rage. It’s almost crazy.

    Hopefully I will soon hit the total right combo and beat them back and sustain it too. Not giving up. Dang it !!

    How are you doing ?
    In a descent place with all this ?
     
  10. Learner1

    Learner1 Forum Support Assistant

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    I am slowly and gradually improving, with ups and downs along the way. This process is filled with many challenges, and it sounds like you have them, too.. I'm curious about how you are tackling them. I find that I can follow whatever treatment protocol I'm given, but the larger challenges are:
    1. Understanding what's at the root of what's the matter with us and then how to fix it. When one is battling on so many fronts, its hard to see the forest for the trees...
    2. Prioritizing what to tackle in which order, so that hopefully by tackling the largest, most essential issues, that the littler problems willl drop away faster.
    3. Managing one's doctors. Even with 2 excellent doctors, they still don't have all the answers (no one can at this point) and in my case, access to everything they want me to do, so others need to be involved along the way. Managing documentation to keep everyone informed, dealing with differing agendas, and getting things done in a timely manner is a huge job.
    4. Finding new ideas/research, trying to understand and put it in context for one's doctors in a way that is welcome and enhances what they are doing.
    5. Weighing all the options and deciding which strategies/experiments to follow for how long.
    These are things I wrestle with all the time. There are things I've had doctors suggest that I didn't feel comfortable with, and I've told them, leading to greater understanding for both of us. There are ideas that I've brought them that have led to new insights, furthering my treatment.

    But most of all, its the endless adding of this, that, and the other that sounds fine st the doctor's office and then one is left to manage at home, wondering if its really helping, while experiencing anything from nothing at all to a wide variety of unpleasant symptoms and collateral damage, that's challenging every day.

    You seem to have a good grasp of a very complex treatment plan. How do you manage the strategy and keep.it all straight? How do you identify what's working and question what's not?

    My sense is that one part of this is the medicine but just as important its how we navigate it efficiently to get well quicker, faster, and hopefully cheaper. This is a difficult process to sustain.

    I hope my questions aren't too impertinent but as I wrestle with them daily, I'm curious of how others approach them, too...
     
  11. Stretched

    Stretched Senior Member

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    There are a number of threads here going back a few years. IMO, if memory serves me right the over ratio of help/ hinder was low, e.g. 1in 5 got relief. However, you have to to extrapolate what patients were using it for, doses, and longevity. Then there’s the potential liver damage issue which requires lab tests ~every 3 weeks. A few extolled it’s virtues over a long period of time while others couldn’t get past a month of severe side effects. I, for one fell in the group who found the side effects too extreme to go forward after 30 days. This was with a full front end load of 2 x 450mg tabs twice a day, which is a lot! Others, on half that dose could go longer.

    In the end, I read of only a few people claiming to be better off having taken Valcyte. BTW, it’s very expensive, ~$8-$10 per 450mg pill. You can readily see the numbers rise the more you take and how long you take it. Some insurance will cover the first phase of whatever protocol you elect. Further, Valtex or Famvir may be a good alternative at a lower price with less risk. Your mileage may vary,)
     
  12. SunMoonsStars

    SunMoonsStars Senior Member

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    “You can readily see the numbers rise the more you take and how long you take it.”

    Thank you for your response. I am not sure what this part means quoted above. ?

    I am about 1 week in with 2x900 a day and I am seeing huge improvement already. I don’t barely have any side effects. Little nausea at first and blurry vision but that was just first few days.

    My insurance covers a script of 450 4 pills a day total for $ 20 dollars. So maybe I have good plan or things have changed ? I read it went generic in 2014. Maybe that makes it affordable now.

    I have very high HHV6 CMV EBV and the other meds you listed Valtrex and Famvir didn’t touch me.

    I pray this continues as I am seemingly responding quite well and tolerating it to boot. ! I read a study on responders vs non responders to this protocol and seems those with my infection combos do the best and though it was around 57 percent were responders. And higher the infection load I believe. Maybe that’s why I am responding so far.
    I appreciate all the feedback so very much. !
     
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  13. Learner1

    Learner1 Forum Support Assistant

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    From the AARP drug trends report:
    There are now 2 generics, priced just under the retail price of the brand name version, which is why your insurance will let you have the cheap copay, as long as they keep it in the formulary. On my ExpressScripts printout, it says I saved $18,000 for my 90 day addiction to 4 pills daily.

    Dr. Montoya said in his recent presentation that hee recommended some patients being in it as long as 5 years... I don't have a crystal ball, but I wrote my Congressman and Senators about stopping price gouging on it and other drugs that recently made the news, for what that's worth... No way we can get well if we're priced out of the drugs that help.
     
  14. SunMoonsStars

    SunMoonsStars Senior Member

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    Thsnk you Valcyte!!
    Amazing response after just one week of 900 mg 2x a day.
    Tolerating it easily to boot !
    Finally chains are releasing from my organs and spine!

    Thank you all for helping with my questions and what to expect possibly etc.
    Taking Mushroom Liquid Extract and GCMAF and Thymus Liquid Cell Peptide for immune boosting and extra in case of any possiblilty of bone marrow suppression that’s on black box warning and will be tested to monitor.
     
  15. lindasch100

    lindasch100

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    there is another thread on Valcyte and I posted this there..
    I am somewhat different than most. I started Valcyte 1800mg At the end of the 4th day I opened my eyes wide and said (out loud) "I feel different". And many of my autonomic symptoms started to improve. After 2 weeks, the dose was reduced to 900mg and I went downhill. Later back up to 1800mg and the very same routine. At the end of the 4th day "I feel different". I have been on that dose for 10 days and better each day. But we are waiting for blood test results on my liver (may be a problem). If so, back to a lower dose.
    Everyone I have heard of has to be on it for months, although Jennifer Brea (Unrest) took Valcyte and her movie implied that she had very fast improvement.

    Update a few days later: I am improving greatly EVERY DAY! No more brain fog or confusion. Was able to do some computer work that I have been struggling unsuccessfully for several years. I have been able to follow recipes and to garden a little. I have ideas and enthusiasm. This is better than I have been in over 5 years. I am myself again!

    I have few side effects except it is affecting my sleep. Trouble going to sleep and staying asleep. But that does not seem to affect my greatly-improved energy.
     
  16. Learner1

    Learner1 Forum Support Assistant

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    Have you tried melatonin for getting to sleep?
    I found I'm short of amino acids as I'm burning them for fuel. Adding citrulline and ornithine for me to sleep through the night. And progesterone.
     
  17. SunMoonsStars

    SunMoonsStars Senior Member

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    Thank for your report. So how long have you been on valcyte and are you saying you go up and down between 900-1800 a day and feel better on 1800.
    I’m about to reduce to 900 from 1800 and I sure hope I don’t regress backwards again.
    Have you monitored viral levels with your improvement and your regressions ? Does joe you feel match you viral tests ?

    Thanks again.
     
  18. zzz

    zzz Senior Member

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    These are wonderful stories, and I'm very glad that Valcyte has been working so well for both of you. When I started IV ganciclovir (the active metabolite of Valcyte) before Valcyte was released, my major improvements started after two weeks, and continued for five years. (I transitioned to Valcyte when it came out a few months after my ganciclovir treatments.) Throughout this whole time, I took 900 mg/day. The minimum effective dose seems to vary quite a bit for people.
    Antivirals work by inhibiting virus replication, so that takes months to take effect. But as you and I have experienced, as has Jen Brea, who got results within two days, Valcyte can have powerful effects long before then. The reasons were described by Doctor Montoya many years ago. In addition to being an antiviral, Valcyte is an immune system modulator. This means that in short order, it can kick your immune system into action and get it to get rid of any problematic viruses (not just herpes viruses, as my own experience attests). This doesn't work in all people, though, for reasons that are not known.

    The second non-antiviral effect that Valcyte has is that it is an inhibitor of microglial inflammation, which has been implicated as a major problem in ME/CFS. This effect is also quite rapid, and can produce a quick remission in symptoms among some people.

    These last two effects also mean that Valcyte can be very effect against ME/CFS even in people who have no active herpes virus infections. I am one of those people.
    These effects seem to be related to Valcyte's ability to reduce microglial inflammation.
    This is very common, especially in those cases where Valcyte starts to produce results quickly. In my experience, the insomnia went away after a few weeks on a constant dose of Valcyte. If the insomnia becomes a real problem, you may have to decrease the Valcyte, at least temporarily. In my experience, many of the Valcyte side effects can be managed by temporary reductions in the dose; with time, higher doses are often tolerated. On the other hand, if you're getting good results at a given dose, it's typically good to stay at that dose, as increasing the dose may not only produce additional side effects, but also has the potential of sensitizing you to the drug.

    I have written many posts about Valcyte over the years on this site, and if you're interested, you can easily find them by searching for posts containing "Valcyte" with me as the author.
     
    Last edited: Mar 24, 2018
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