The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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  1. nelle

    nelle

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    hi. new to group. have probably had ME for over 30 years. used to wax & wane. sleep switched to hellish insomnia in my 40s. more symptoms & general broad decline into moderate disability during that time. awful marital situation collapsed me severe a year ago. ironically after just having figured out what i had after finding the ICC online.

    reactivated in ebv, hhv6, cmv. in detroit area, found my way to dr lerner at beginning of june. started valtrex. slow titration & started to see improvements in ebv. but marital situation still awful. had to ask him to leave in october, which caused another relapse - kicking out what physical function i had. so mostly in bed the last 6 months. only able to feed self & use rest room. was already severe cognitive & sensory. viral titers continue to climb. i had been set to do vistide when i was forced to end marriage.

    i am alone & have few support resources.

    given that i am a 1 on EIPS & alone, i opted to try valcyte. lerner kept me on the 4grams/day of valtrex as well. symptoms worsened, as expected. 1st month labs were ok. day 41 (yesterday), more neuro symptoms - like brain melting/storm - from top of head to base & through auditory areas. i have severe tinnitus as a rule, but this amped it up to painful levels. i spent day in & out of sleeping & dealing with the neuro stuff - called him since this was not what i had experienced on drug up to that point. he told me to immediately stop & i am to schedule to see him next week.

    any experience with this kind of reaction? i found valcyte made me worse overall - more fatigued, weak, seemed like more stuff going on in my head - especially across my sinus & eyes. lowered my already low crash threshold. but there were also glimmers of clearing. so was hoping i may be a responder. even though sick for so long.

    today i am just ... bummed out. i have so little quality of life. which is why i jumped at chance to try valcyte.

    should add that also have POTS.
     
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  2. RUkiddingME

    RUkiddingME Senior Member

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    Hi Nelle and welcome to Phoenix Rising. I am so sorry to hear about what you are going through. I am on my second round of Valcyte and have documented my journey on this site which might be of some help to you. When I started my first round of Valcyte I was a 1 on the IEPS as well. Weeks 7-12 were the worse and then I started getting better. The first few entries on my blog don't show up anymore in the screen so there is a link to my intro below. Please don't give up. It can be very rough and scary when starting Valcyte. It certainly would be more difficult going through it alone. I wish you the best of luck and let us know how you make out. :)
    http://forums.phoenixrising.me/index.php?entries/valcyte-2013-intro.1346/
    http://forums.phoenixrising.me/index.php?entries/valcyte-round-2-week-20.1681/
     
  3. nelle

    nelle

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    thanks for the welcome. & for the links to your blog. i may have come across it before joining.... but short term memory is shot with the rest of my cognitive issues.

    i know that reactions to valcyte can be tough. & that duration of worsening can vary greatly as well. i am not sure why he stopped drug after i explained my symptoms yesterday. can we get something similar to IRIS with antivirals? for sure there seemed to be a lot of either inflammatory action or excitatory stuff going on in my head - that is gone today, though my auditory still feels more ramped up than usual, with some pressure & high tinnitus. since going severe, the tinnitus has stayed pretty bad, so i can't say for sure if today is more unusual.

    i am glad you experienced improvement. thank you for the encouragement about not giving up. i forgot to mention in my 1st post that i am 51 years old. i don't think stats exist for gradual vs acute onset & what that means in terms of response. but i do know that given how long i have been ill that makes recovery more difficult. but i would be thrilled to even reclaim little of life.

    reading is hard, but will look at your blog as able. lerner still has me on the 4grams of valtrex. he isn't exactly the most.. forthcoming with explanations, so i have no idea what he thought may be going on. & i doubt my visit will clarify too much. other then what his next step recommendation is.
     
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  4. SOC

    SOC

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    I definitely had something similar to IRIS with Valcyte. I was worse than baseline for a while, but once it was over I was much better than baseline. For me, the IRIS-like rxn started at about 4 months into Valcyte treatment and ended at about 6 months. While I chose to put up with the temporary significant additional symptoms in the hope of getting better (which I did), that is not the best choice for everyone for both personal and health safety reasons.

    Dr Lerner is a very old-school doctor -- do what I say and don't ask questions. I agree he is not very forthcoming with explanations. I stayed with him for several years because he really knows his stuff and I was getting significantly better, so it was worth dealing with his idiosyncrasies.

    I suggest you ask two simple and direct questions I think he will answer: "Do you think it is safe for me to keep taking Valcyte" and "Do you think it likely I will get better if I continue with Valcyte?" If he says yes to both, then it's up to you to decide if you can cope with feeling worse for as much as a couple of months under your current circumstances. OTOH, if he thinks it's not safe or you won't benefit, then Valcyte isn't a good treatment for you and you'll need to find a different treatment. Dr L may not be warmest or most forthcoming of doctors, but he cares a lot and he knows more than most (if not all) other doctors about using Valcyte for ME/CFS.
     
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  5. nelle

    nelle

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    hi, soc. thanks for commenting. were you acute or gradual onset & how long after getting sick did you start valcyte? i am glad it worked for you & i hope you are continuing to do well.

    i have been suffering without valcyte, so additional suffering in the hopes of something better is the choice i made. i have very little quality of life currently.

    i was cautioned ahead of time about dr lerner being old school, so was entirely prepared for his manner. he certainly cares for his patients, otherwise he wouldn't still be working. i try to approach cautiously but never really know what may turn him grumpy. i do trust him - you are right about him knowing his stuff.

    thank you for those suggestions. he has been evasive about the 'likely to get better' part. i think because i have been ill for so long. but he has said at times that it has taken me so long to get so ill, it will take a long time to improve. his 1st choice for me was vistide infusions. but hard to do that so ill & alone.

    i saw him a week ago & he was encouraged by how miserable i was, saying it was a good diagnostic predictor of possibly being a responder. it may be harder to tease out why he halted valcyte based on what i said by phone. i looked online & it was not listed as a side effect. so that is why i wondered about the IRIS.

    when you experienced IRIS, did he halt or change your dose? i am not sure i would be able to distinguish the general worsening of symptoms from IRIS. but i do know that last week was my hardest of the weeks thus far. after being so ill for so long, my tendency is to just tolerate severe symptoms. i only called yesterday because it was different & so severe. & i was hesitant in even making the call.

    i remain legally married even though husband is not here. i think if he wants to do vistide instead, i may be able at this point to hire someone to help me do those. realistically, i have limited options. i cannot travel to another specialist. i have clear viral reactivation (think my last numbers out of labcorp were ebv 1:40, hhv6 11, cmv 275. no co infections. at his age, he won't be practicing for much longer. & i will be left without anyone to help with this disease.
     
  6. Tammy

    Tammy Senior Member

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    Don't have any experience with Valcyte but wanted to send some hugs:hug::hug::hug:
     
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  7. nelle

    nelle

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    thank you, tammy. that is perfectly timed as i head to rest... & try to keep my hopes up. this last year was the hardest of my life. to finally know what i had... to realize the awful realities of it... then to have my 23 year marriage collapse pushing me severe. once i went down, it made my husband even more distant & hostile. so i ended up having that stress on top of trying to deal with the seriousness of what i was facing. now.. will..close..eyes....all i have done for 6 months is rest & feed self. i have to be careful as this is a lot of online time for me - as well as a lot of writing...
     
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  8. SOC

    SOC

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    I had an acute onset -- very sudden-onset flu-like illness. I now suspect, however, that there were signs of things not right with my immune system for many years before what I consider the onset of my ME/CFS.

    It was 5-6 years after my sudden-onset flu-like illness that I started on Valcyte.

    I completely understand. I was bedbound by the time I found my way to Dr Lerner and Valcyte, so I was willing to take some chances to get some quality of life
    Dr L doesn't make promises he can't keep, and there are no guarantees with ME/CFS. He told my daughter, who had been continuously ill for only a year (after years of very mild ME), that he thought he could get her back to fully functioning and he did. He told me that given my age, severity, and length of illness, that he wasn't sure how much he could do for me, but he thought I might get a substantial improvement with AVs... and I did. He did warn me it would take time, too, and it did. But I noticed a very real improvement at 6 months, for which I was grateful. Every bit helps when you are starting from near zero. :)
    Might he have been concerned that you couldn't emotionally/socially handle being worse given your life circumstances? Maybe he just wants to give you a break and then consult with you about your ability, given life circumstances, to deal with the side effects at this time.

    Also, on the possibility that it might be and IRIS-type rxn, he might want to slow down the rxn. IRIS can be dangerous if it gets out of hand.

    No, he didn't, but I didn't have the type of neuro symptoms you are having, or not to that degree.

    You have my sympathy. I am in a similar marital situation at the moment, although I had to leave rather than the other way around. Not having a partner does limit what we can do. However, there are a lot of people here at PR without support systems so there's lots of support here for coping without a partner.

    Good luck! I hope your meeting with Dr Lerner is productive and you are given a path forward.
     
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  9. Butydoc

    Butydoc President

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    Hi Nelle,

    I have a few observations concerning my use of Valcyte. I have been on three separate courses of Valcyte with a strong positive outcome. The first time I was started with a three week loading dose of 1800 mg per day followed by 900mg day for 7 months. This dosing schedule was selected because it was the recommended dose to treat CMV retinitis which the drug was approved. The problem was that Valcyte was being used off label to treated ME/SEID, which no scientific dose was established. After about 3 weeks, my health deteriorated substantially, mostly worsening of my neurologic symptoms. I had to stop the drug at the 7month mark due to my worsening symptoms. I improved considerably after I stopped the drug with improvement much better than baseline. Over the next few years, my symptoms worsened again.

    The second time I started Valcyte, a different approach was used. Dr. Montoya no longer uses a loading dose. When he initially starting using Valcyte, he felt that a worsening of symptoms meant that the patient could expect a positive outcome. He no longer believes that to be true. Now he believes that the worsening of symptoms could actually cause long lasting harm. This time he started me on 225mg/day. I would increase the dose every 2-4 weeks depending on me being at a least baseline. I took me more than two months to reach 900mg/day. I essentially had minimal worsening of my symptoms. I was on this schedule for more than a year before I had to stop because of liver enzyme/ kidney problems. My improvement was significant.

    The third time I started Valcyte was 6months after I stopped the second time. This time I was started on 225mg/day and increased only to 450mg day. My clinical response has been great. I've gained weight, strength, endurance and less PEM. Montoya told me he was using Valcyte with me as a microglial inhibitor and started acyclovir as a antiviral and celebrex as a anti-inflammatory. He also believes that I should be on the Valcyte for at least 2 years.

    My take home lesson from all of this is that no one really knows how Valcyte works in patients with ME/SEID nor have any real idea of the correct dose or dose response curve. I believe many people who don't tolerate Valcyte, are probably using a loading dose and/or starting on too high a dose. I appears people who have ME/SEID don't tolerate the usual doses of medications and may be better served starting out at very low doses of any new drug and increase the dose slowly until therapeutic.

    Best,
    Gary
     
    Last edited: Mar 21, 2015
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  10. nelle

    nelle

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    i can't tell you all how much hope you have given me by sharing your experiences. SOC - thanks for elaborating. i know he stopped me because of the neurologic presentation. i am pretty sure by phone he wouldn't remember who i was/what my circumstances are. i am glad that your daughter & you found improvement. though i am sorry about the marital stuff. hoping that your path forward is a good one.

    gary - this is so encouraging to me. i really appreciate you detailing your experience with valcyte & sharing montoya's thoughts. i really have felt all along "start low/go slow" should be my approach. it is what i have always had to do with meds. i didn't tell lerner that i titrated the valtrex in slowly to reduce worsening. & that worked great. i didn't think i had the option with valcyte given the pill cutting warning.

    oddly, the 1st 3 days at 450mg, i felt ... more clarity & energy. i thought it was some fluke. then i doubled dose & started suffering. i think in the 1st month i called & said i felt like i was dying. & he said that was great - meaning good indicator of possible responder.

    but i continued to worsen until the neuro/head stuff, which is my longest standing issue, got so extreme. prior it had been just worsening me across the board - more fatigue/weakness, increased sensory, lots of stuff going on in my head - especially across my sinuses & eyes & into ears. i had moments of head clearing, which were welcomed. but quickly pushed back under. & then the lowered crash threshold. i was heading from EIPS 1 to 0. but trying to endure & hoping for the fabled turn of corner sooner rather than later.

    i don't want to give up on this drug. i can't imagine the vistide infusions in my state, especially with no support. hearing that others are having such good responses by this other approach is very exciting. the devil will be in the details though. i don't think i have a chance at all in selling this to lerner. unless he really feels sorry for me. i can see what he recommends, but i think it will be vistide. he follows his protocol. there is no dialogue. if i address this & mention montoya, i expect he may have a cow.
     
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  11. nelle

    nelle

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    but seriously, you guys took me from no hope to hope yesterday... that is an important thing....

    how are people doing the reduced dose with the scary pill cutting warning? compounding pharmacy? if cutting, then i am guessing it is something other than an issue of time release...

    gary - did your viral titers change to correspond with your change in health? & out of curiosity - is cmv your worst infection? it seems anecdotally that the people i have talked to who have done valcyte & vistide - the ones with cmv being markedly positive seemed to struggle the most.

    lerner is all about data. he is not much into hearing how you are other than 1 sentence & where are you on the EIPS. & then looks at the viral titers.

    i can wait to see what he recommends & then bring this up, maybe bring in your story, gary - though again i can't think he will even look at it. is there more info anywhere that reflects montoya's change in protocol & perspective? i can try to use that as well... but in the end, it may mean trying to find someone here to work with me. so far no one will touch it.
     
  12. nelle

    nelle

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    btw, i meant to say, so happy you are doing so well.
     
  13. nelle

    nelle

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    it just occurred to me that even if i could address this with lerner, his concern - besides not following his protocol - may be slow titration/low dose possibly creating resistant strain of virus? this is guess from someone without a functioning brain. the 4 grams of valtrex/day has not impacted hhv6 or cmv levels. just ebv.
     
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    when on valcyte, pills are handled and then swallowed, so i personally think the whole cutting pills warning is just crazy, unless someone else is doing it for you??

    good luck, just keep plodding along and u will see cmv/hhv6 titres drop
     
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  15. Butydoc

    Butydoc President

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    Hi Nelle,

    I don't believe there is any concern about cutting the 450mg Valcyte tablet. Since you are taking this medication, there is no additional risk to you. Probably not a good idea to have someone else cut your pills, but this risk is in my opinion overblown.

    Concerning developing resistance. Since it is not clear what action Valcyte is having, i.e., antimicroglial vs anti-viral, it certainly unclear what the proper dose would be. Also, the risk of developing resistance, assuming you know what organism you're treating, is offset in my mind by the ability to tolerate the drug and potentially having an improvement in ones ability to function.

    Best,
    Gary
     
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  16. nelle

    nelle

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    thanks for both comments. in my mind as well being able to tolerate & have improvement in function & quality of life is key. i am sure lerner wouldn't even have a discussion on mechanism of action. his goal is to knock down the viral titers. he will wade into no other waters regarding this disease.

    it will be interesting to see what he says this week. i suspect he may push for vistide infusions. but i hope he would be open to letting me do "start low/go slow."
     
  17. jeff_w

    jeff_w Senior Member

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    Hi @nelle

    I was at an EIPS 0-1 when I began Valcyte. It made me worse for the first 2.5 months I was on it. After that, I was back to baseline, followed by definite improvement. I'm now well enough to go out a few times per week, and I keep improving.

    Some people start on half a pill or less because they can't tolerate a full dose in the beginning.

    Good luck.
     
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  18. Butydoc

    Butydoc President

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    Thanks Nelle.
     
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  19. SDSue

    SDSue Southeast

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    Hi @nelle. Welcome to PR. I'm sorry to hear you are suffering, but am glad that you are finding hope here - it's why so many of us stick around! ;)
     
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  20. Gingergrrl

    Gingergrrl Senior Member

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    @nelle My doctor who is an ME specialist (and not Dr. Montoya so there are at least two doctors to confirm this) said that it is absolutely fine to cut the pills. He said they are not time released and the only issue is possibly that you are not supposed to get it in your eyes. I cut them very carefully (or my husband cuts them) and then we wash our hands and do not touch our eyes (if this is even the reason and may be urban legend!) The cut pieces go straight into a plastic pill bag which I label and they never touch anything else. I even bought a new pill cutter that is strictly for Valcyte and no other meds touch it.

    Do you know why Dr. Lerner would be pushing for Vistide? I am not familiar with it (except that it is only IV form... I think?) but what is the added potential benefit of Vistide vs. Valcyte?

    @jeff_w is absolutely correct and is probably referring to me. I started Valcyte at 1/32 of a pill and raised it to 1/16 and then to 1/8. I do not tolerate the 1/8 (I pretty much do not tolerate anything :mad::eek::bang-head:) so after a few days I will be trying again with the 1/16 pill. So, you are not alone in this. Luckily my doctor is very open to questions and believes there are many paths and each patient is different (and it sounds like Dr. Lerner is the opposite although I have never met him and am strictly going by what I read on PR.)

    Best wishes to you.
     
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