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Patients Taking Valcyte with Imunovir/Equilibrant

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Sparrow, Sep 17, 2014.

  1. Sparrow

    Sparrow Senior Member

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    I was hoping someone seeing one of the "expert" doctors could help pass on what they were advised (in a completely non-official, I promise not to consider your comments "medical advice" kind of way, just sharing experiences between patients).

    My doctor is supportive, but not an expert on these things, and I was wondering what more knowledgeable doctors were suggesting in terms of taking Valcyte along with Imunovir and Equilibrant. Did your doses of one get changed at all while you introduced another? And what kind of dosing schedule was recommended? As I understand it, Valcyte is morning and 12 hours later, with food, and I assume that's the one to work around most firmly. Do the others need to be taken at different times so as not to interfere? Any guidance you've been given would be helpful to me if you're willing to pass it on. Obviously everything will be done in consultation with my own doctor. Thanks a bunch!
     
    Last edited: Sep 17, 2014
  2. Ema

    Ema Senior Member

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    I don't know the answer to the question, but Valcyte should be taken with food (esp fatty foods) to increase bioavailability.
     
  3. Sparrow

    Sparrow Senior Member

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    Oops! That was just my brain typing on auto-pilot. Fixed it now. Thank you for mentioning it, though. That's important information to have correct. :)
     
  4. RUkiddingME

    RUkiddingME Senior Member

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    Hi Sparrow, I see one of the "experts" but am on Valcyte only at the moment as my doctor doesn't seem to be a big fan of Immunovir. Doesn't believe it increases the NK cells enough to be worth taking. He is ok if I do decided to go on it though. I have heard many success stories about Inosine and Imunovir, especially if you get a lot of infections. If you have questions about Valcyte, I have documented my entire experience on it so far http://forums.phoenixrising.me/index.php?entries/valcyte-2014-round-2-week-9.1651/
     
  5. lnester7

    lnester7 Seven

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    I was told to start with LDN (to avoid autoimmunity from the modulators). low work way up to 4.5mg or tolerated doses. when stable at 1.5mg, move on to next pill (continue tritrating). I got terrible brain fog and sleepiness if too much and too fast.

    1b) Sleep first stage 4 inducer if needed. Treat Thyroid if needed.
    1c) Vit D if needed, b12 as needed based on levels, CoQ10 200mg per day, FIsh Oil 4,000mg a day.

    2) I got equillibrant first for coaxsaquie and Parvo, Start half pill, up every few days by half pill until 3 a day (something to do specifically with me, never go over 3 a day I think because I am not white??? don't remember, others go up to 6). I got extreme muscle pain if go too fast and Flue like symptoms.

    3) When stable on equillibrant, start imunovir, start low and slow by half a pill every 3 days. 3 Pills a day top, skip every 6 months for one month. This is the new way (Do not do the 6 a day because can make you autoimmune). My side effect was acidity when peeing and intercourse burned really bad, also if too much got fluish.


    4)Antiviral (this took one year tritrating and establishing others. My titters were not as high so they tried the natural way first, like that did not work they added the antiviral. Took like one year to go from low dose to the 1,000mg a day. I use Famvir.

    5) Midorine and Florinef: If I would have known I would have start by this one. Still tritrating on midodrine. Florinef start slow and low I am at .15mg per day. Midodrine up to 15mg every 4 hours and working on this still.
     
  6. Sparrow

    Sparrow Senior Member

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    Thanks for sharing your experiences. That's really helpful. I haven't read through all of it yet, but you mentioned the regular bloodwork you were having done when you first started the Valcyte (to make sure your body was tolerating it, I assume). Can you tell me how often you had those done? I came away from my appointment with some requisition forms, but I'm feeling like maybe they're not as frequent as you were being tested early on.
    Obviously I want to be as safe as possible with this.
     
  7. Sparrow

    Sparrow Senior Member

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    What you've described sounds actually pretty similar to the path I've ended up taking, though my doctor did not start me with LDN, and I took FOREVER to gradually increase dose of Equilibrant because even a quarter pill made me so incredibly sick (though totally worth it).

    I hadn't heard that doctors weren't recommending 6/day, 4/day anymore for Imunovir. That's interesting. Do you take the 3 in three separate doses over the day? I'd like to discuss this with my doctor.

    I also have not yet explored the POTS-type medications. I'm not opposed, but am also a bit nervous because they want me to do tilt-table testing first, and given what happens in my day-to-day, that would likely trigger a huge set-back in functioning for me. Sometimes it's months before I come back from something like that. Sometimes I never seem to - I just start from scratch from a new lower level of functioning. So I'm nervous to mess with it that way when I've been making solid progress. Can you tell me why you would suggest doing them first? Just because of the obvious improvement from them?
     
  8. lnester7

    lnester7 Seven

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    @Sparrow : I take 3 pills one w each meal. I am thinking to quit to be honest, I think it was the LDN that raised my NKs and not the imunovir, My NK did not go up until I raised the LDN to 4.5mg, If the LDN is doing the work I don't want to take stuff unnecessarily.

    The thing is if you are positive for OI, the meds will avoid the bad crash. I suggest first because is the biggest bank for the money and faster, So a person doesn't have to quit a job or deteriorate so bad. Is the chicken and egg, the more disable you are the more you will be (deconditioned) so at least w this meds you can maintain some level of activity. This is my personal opinion only. Based on what I have seen and my experience.
     
    RUkiddingME likes this.
  9. RUkiddingME

    RUkiddingME Senior Member

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    During the first three weeks of Valcyte I was a loading dose of 1800 mg daily. 2x450 mg tablets twice daily. During those three weeks I had to have my blood tests done weekly. After the three weeks were up and I was on 900 mg once daily I got my blood work done monthly. Now during round two I have graduated to having it done every six weeks because I tolerated it so well. The interesting part is that my local Canadian doctor added Lipase to the blood requ (not routinely tested for Valcyte)and that's the only one that has given me problems. Although I never had a baseline Lipase done it was weird that my abnormal levels were during the loading dose and if I had a glass of wine.
     
  10. Michael_venice

    Michael_venice

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    Sparrow, could you elaborate a little more on your experience with Equilibrant? The ways it hit you, how it felt, etc. How long it took to get to X dose, and how you feel it helped? If possible.. I'm searching for people's experiences so I can have something to relate to as I try this myself. It's been hard. Thanks.
     
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I think after 6 months of valcyte i didn't see anymore improvement. So maybe that's a good length of treatment and then swap to famvir to maintain your gains? ?

    I started with just 1 tablet and once it was tolerable took 2 tablets .

    Immune mods on there own i don't think are strong enough, maybe a combination is required. Look into herbs that increase interferon such as astragalus etc which could be added to immunovir.
     
    NK17 likes this.
  12. NK17

    NK17 Senior Member

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    I've been on valcyte for 7 months now, did not start with the loading dose my ME doctor is still prescribing, I went low and kind of slow.
    I've yet to see any improvement, but I will persevere.
    Doesn't Equilibrant contains astragalus?
     
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    yes it does, so if using equilibrant i wouldnt think more astragalus would be necessary, but if using say immunovir one could add astragalus to this.

    Im looking at taking a combination mushroom extract and add astragalus and bupleurum. Also be using an interferon inducer, maybe cycloferon or arbidol which are used commonly in eastern block countries. its really a trial and error to try and increase immune function.
     
  14. Sparrow

    Sparrow Senior Member

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    I started with a quarter pill, and did not increase my dose until I felt more "normal" on that amount. It was usually about two weeks between dose increases, though I left it at a steady dose for longer sometimes by choice. Later on in the process, I've been able to tolerate going up by half a pill instead. The wave of symptoms I get with each dose increase has been getting less severe with each increase. Outside of the symptoms from increasing my dose, I haven't had any side effects at all (which is rare for me - I tend to be pretty side-effect prone).

    I take 4 pills a day now. To be honest, I've sort of been "saving" my last two pills of dose because increasing the dosage seems to give me a bit of an extra kick to my recovery, and it can help if I've done something foolish and triggered a backslide. And maybe partly because psychologically it helps to know there is something else out there that can still help me further. I don't know.

    The start-up effect for me was a lot like having a really bad viral illness. From my first quarter pill and the first increases after that, I felt sicker than I think I've ever been in my life. Chills, flu-like symptoms, etc. It was pretty awful for the first days after, and gradually reduced over the next couple weeks or so. BUT... completely worth it. I've been on a lot of stuff, and so far Equilibrant is the only thing that has made a significant, obvious, noticeable difference for me.

    At first, it took away the "sick" feeling parts of my crashes entirely. I'd still be muscle weak, but not at all viral-feeling like I always was before (it used to be that when I crashed I'd be outstandingly "sick"). It also gave me back a bunch of energy compared to where I was, and a lot more functioning. There were windows of time when I actually felt almost like a well person again (which is unheard of for me - I was bed ridden for years). Unfortunately, I think the more I crash, the more I seem to "undo" some of the impact, so the viral feeling has gradually come back over time (though not nearly as severe as it was), and I've lost some of that extra energy, etc. So I'm not anywhere near "normal" now, but I can walk to get things in my house, go downstairs, sit up some, etc. and I couldn't before. I also feel much better in general, so long as I don't overdo it.

    The difference is definitely tied to the Equilibrant since it was a quick change, and I've had a renewed improvement in functioning with each increase in dose. I don't think there's any placebo effect involved, since I've taken plenty of things previously that I really thought would help and didn't at all, and Equilibrant I didn't really expect to do that much. I think we're all a little different, so I know that it does nothing for some people. But personally, I would give up everything else I'm taking before they could pry my Equilibrant away from me. :) I think it's definitely worth putting on the list of things to try. Hope that helps you some!
     
    Alea Ishikawa likes this.
  15. Michael_venice

    Michael_venice

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    Wow, that was SO helpful, thank you. Even what you wrote about 'placebo' effect--that echoes things I've said about various treatments. I mean, you really get it, and articulated it in way that I can really relate to.

    I'm about 6 weeks in. I'm JUST up to 1/2 pill day, sometimes a sliver more. The first few weeks, I thought I could take 1 pill and ended up having to stop for days b/c so sick, so it's been rocky. I get pretty sick to my stomach very reliably after each dose, it also seems to be exacerbating the massive abdominal swelling I get (which has had no identifiable cause). Also, intense increase in all-over muscle pain.

    When I first started it, I got VERY specific flu-sypmtoms--I was coughing (never cough), sinuses burned like a bad flu, fever (when body temp has been low for years now), swollen neck lymphs, etc. That's subsided, but I still get real ill, exacerbation of regular symptoms, sometimes pretty bad. Oh, and exhaustion. Very common, an hour or so after a dose, I utterly crash out energy wise. I don't even want to say I go to sleep, because it's more like going unconscious than sleeping.

    I worry that at the very slow rate I'm increasing, it'll take forever to get to 4-6 a day. The 1/2 are hitting me very hard still. Since people seem to be doing well on equilibrant and Valcyte, I feel a pressure to consider the Valcyte. Though, my last few RXs have made me sick beyond belief. I've gotten seemingly more and more ultra-sensitive to meds as time has gone by in this illness.

    I really appreciate the time you took to write this. I'm very glad it seems to have helped you, and I'm hoping I get some of that myself. It's been very hard, and having someone's experience to relate to will help me get through this.
     
  16. Sparrow

    Sparrow Senior Member

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    I'm so happy it was helpful to you. Obviously I am not a medical professional, so you probably shouldn't take my suggestions too seriously, but from what patient to another in case it helps at all, based on my own experiences I would say to just take your time with it. Give your body time to adjust between dose increases, and if it takes a lot of time before you feel good on the half pill, that's okay. What's important is whether eventually down the road they can help you, and if they do, it will be worth the wait. And if that first half pill has hit you really hard, I might suggest increasing only by quarters (that's what I had to do, and they still hit me really hard at first). For what it's worth, I really did find that pill 3 and 4 were vastly easier and faster to adjust to than 1 and 2, so the process may speed up for you later on as well.

    I've tried to learn to just take as good care of myself as I can when I'm dealing with the sick phases. The pills are obviously doing something, and my body seems to need all the resources it can get to focus on helping them out. I want them to have the best chance they can in the fight.

    I wish you all the best with it. Good luck!
     
  17. Michael_venice

    Michael_venice

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    Thank you again. I'm wondering…when you say it was difficult for you (Equilibrant), can you tell me a bit more? I've read other people saying it was difficult (or unbearable), but I wonder if others experience what I do. Even 1/2 pill (after 5 weeks or so) can hit me very hard, and quite fast. If it hits me hard, about an hour after, I start getting pretty intense muscle pain, all over, but mainly in my legs (have pretty bad neuropathic pain in my legs). It does make me sick to my stomach for at least a while (sick, nauseated). I can get flu-ish things, like stuffed ears, sore throat, lymphs in neck get tender. The worst though, is a very heavy…not tiredness..but almost a falling-down level exhaustion. I sleep (sometimes for a few hours), but it's not a quiet sleep, and I get a lot of head pressure and disorientation (those are symptoms I have anyway, but it seems to bring it on pretty heavy). And when I wake up, I'm really staggering around for at least a few hours more. The cycle can lead to more intense muscle pain in general, even after the other effects go down a bit.
    My baseline is pretty bad, housebound. It's hard to get knocked down even harder. I'm supposed to (try to) see Dr Chia in January, but any experiences of others would really help me. Thanks again.
     
  18. Sinclair

    Sinclair Senior Member

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    @heapsreal I've been on Equilibrant for 5 months up to 2 - 1.5 dose, and adding Astragalus once every three days has really made a difference for me. More than that > autoimmunity, but less > more ME symptoms.
     
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  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Would Be good to know how much astragalus is in each equilibrant pill. The average astragalus capsule contains 500mg, I take 2 in the morning and 2 at night. At a guess maybe 100 to 200mg of astragalus per pill of equilibrant, if that's the case, that's not a bad dose.

    sounds like you have worked out what works best for you by taking it every 3 days. Have you had any immune testing eg nk numbers or function to see if these treatments are effecting them?

    Cheers
     
  20. Sinclair

    Sinclair Senior Member

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    Too soon to evaluate yet. Started Equilibrant in August, added Astragalus in October, added Isoprinosine in December. The only one ordered by a MD was the latter (so far, the less effective from the symptoms point of view)

    Best,
    S.
     
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