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Has anyone had akathisia (severe muscle agitation) from Valcyte?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Gingergrrl, Mar 22, 2015.

  1. Gingergrrl

    Gingergrrl Senior Member

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    I couldn't decide whether to put this in my ongoing Valcyte thread but figured more people would see it if I started a new one and I am desperate for any info.

    I am wondering if anyone has ever experienced akathisia from any dose of Valcyte (brand or generic.) I have now been on Valcyte for almost two months starting at 1/32 pill and currently on 1/8 pill. This is my second attempt to raise it to the 1/8 dose and it is going very badly. I know an 1/8 pill must sound ridiculously small to most of you, but I have extreme sensitivities to meds so an 1/8 for me is probably comparable to a full pill in a normal person.

    Having said that, today is my 3rd day of the 1/8 pill (the first go-round I lasted for 7 days on the 1/8 pill until I lowered it back down to the 1/16) and I am having severe agitation in my muscles which I can only describe as akathisia. It is a complete inability to keep my muscles still and I would literally go outside running (if I did not have shortness of breath and require a wheelchair!) b/c I feel that agitated and restless. I have witnessed akathisia in former patients that I worked with in my career so I am familiar what it looks like. However, it was from a totally different class of meds and not from Valcyte.

    I have taken Atenolol and Klonipin today in order to reduce the symptoms and it is barely touching it. I left a msg for my doctor about an hour ago although I HATE bugging him again after calling him last weekend when I had an allergic reaction to what turned out to be a food dye. That one was not from Valcyte but this one, I believe it is.

    My feeling and my husband's feeling is that I need to stop the Valcyte in order to recover from this and my body just does not tolerate it but I am waiting to see what my doctor says. Initially (in my other thread) I reported positive gains from Valcyte including that is was giving me energy, helping me cognitively with noise tolerance and raising my BP. None of these things are true any more and the last few days (before the akathisia) I have had no energy or a wired energy causing me severe insomnia, severe shortness of breath, chest pain, tachycardia, severe noise and visual intolerance (worse than ever in my life) and my BP is back in the 80's/50's every day.

    The only two positives that remain are that I no longer have unexplained bruises and my ability to feel thirst has improved (but the thirst response is lessening and it was hard to drink today and food has no flavor to me again.)

    I feel that the 1/8 Valcyte also causes me neurological or neuropsychiatric symptoms which I normally do not have. I have been trying to stick with it b/c it is my last hope and not sure there are any other treatment prospects left which makes me feel more hopeless.

    Thanks to anyone who is still reading and I am not saying this to discourage anyone else from trying Valcyte, just wanted to share my most recent set-back and hopefully get some help.

    ETA: 1/8 Valcyte equals 56 mg in case that helps anyone.
     
    charlie1, AndyPandy, NK17 and 3 others like this.
  2. Sidereal

    Sidereal Senior Member

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    Sorry about the akathisia. Is there anything else you're taking? I've never taken Valcyte so I can't advise but I just wanted to address a couple of points.

    At 56 mg it's highly unlikely the drug has any viral activity so the benefits you experienced at first were likely due to its immunomodulatory properties (microglial inhibition). I've found with another microglial inhibitor that every so often it loses efficacy and I have to take 1-2 days break in treatment before restarting it. IF Valcyte is working in the same fashion for you, then pulsing it may be something to consider. Given akathisia I would certainly stop it until that clears up and then restart at a much lower dose (if at all). There are much safer less toxic natural supplements that also act as microglial inhibitors so you might consider switching to something else.

    I wouldn't view Valcyte as your last resort. Not sure why you feel this way? There is no evidence at all that ongoing ME/CFS symptoms are caused by herpes viruses. While mono is a known trigger, people whose illness started with totally different triggers (enterovirus, Q fever, head trauma, stress, surgery, chemical poisoning, no obvious trigger etc etc) can develop the same constellation of symptoms. There are countless treatments out there to try.

    It sucks big time to have a reaction like this but please try not to despair.
     
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  3. Mouse girl

    Mouse girl

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    Aw, really sorry to hear about this, I understand the frustration and despair. It's so hard when you finally think you found "the thing" that is finally going to help save you from this disaster of an illness and then the crushing blow when it seams that it might not be "the thing" after all. I'm sure you will feel a bit more at ease with it all once you stop and recover a bit from this latest set back. It's ok to feel that disappointment and sadness though, it's normal and a very human response.

    I haven't taken valcyte so I can't help in that dept, sorry.
     
    oceiv, Gingergrrl and Never Give Up like this.
  4. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Oh the disappointments are so hard, I'm sorry.

    Don't give up, my son is on very low doses of his antivirals/immunomodulators and getting positive effects. He can't tolerate higher doses and his doctor says that some people just can't, that it's OK, that he will still benefit from taking small doses, and that some patients still make great strides over time. So far he's been right!

    Sidereal is right, there are so many things to try. The fact that so many paths lead to the same constellation of symptoms makes me think that whatever is at the heart of it is probably not one persistently active pathogen that can only be knocked down by one treatment. What these treatments that help are doing may not be what we think they are doing. Take whatever they're giving you and chip away at the symptoms a bit at a time. They will add up.

    Hang in there, Gingergrrl!
     
  5. Gingergrrl

    Gingergrrl Senior Member

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    Thank you all for here and PM's and hope to feel well enough to update this thread later. Thank you zzz, Sidereal, Mouse girl and Never Give Up & Halcyon.
     
    charlie1, oceiv and halcyon like this.
  6. NK17

    NK17 Senior Member

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    So sorry to hear about this bad turn @Gingergrrl.
    I hope that the akathisia has abated today as well as all other nasty symptoms.

    I've been on VGC for a little over a year and I was fortunate enough not to experience any side effects but did not rip any benefit at all and have recently suspended taking it on the advice of my ME doctor.

    I second what others have said that this specific A/V is not your only and last chance at recovery, I'd like to show you and think that there's a little light at the end of our tunnel.
     
  7. Gingergrrl

    Gingergrrl Senior Member

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    @Sidereal I did not add or change anything else med or supplement wise and only increased the Valcyte from 1/16 to 1/8 tablet. When I increased it the other time, there were all these other confounding variables but this time, there were none so it has to the the Valcyte.

    What are you referring to re: less toxic natural supplements that are microglial inhibitors? I know you & I have talked about LDN but what are the others? (Please forgive me if you already told me and I am not remembering!)

    I put a huge amount of hope into Valcyte b/c I have seen several solid recovery stories from it. I also initially had such a good response that I felt hopeful it would continue but not only did it not, but it gave me side effects that I never dreamed of. I am not sure what else I would try at this point? I barely am able to tolerate any meds like a normal person.

    @Mouse girl This is exactly how I feel and it is hard to go through this again. When I tried Famvir, I thought that if it doesn't work (which it didn't) that I could still try Valcyte but now that I have tried Valcyte, I don't know where else to put my hopes. I had high hopes for IV saline as well which turned out to be a disaster that almost killed me. Nothing seems to work for me like it does for others.

    @Never Give Up Which anti-virals and immune mods is your son having positive effects from? I believe you shared in some other posts that he sees Dr. Chia (please correct me if I am wrong) and if that is the case, I already know I cannot take Equilibriant b/c I have Hashimoto's and my own ME specialist did not feel it would be good for me.

    @NK17 I am dying to hear what your new plan is now that you are off of anti-virals! Can tell me privately of course and don't mean to put you on the spot, I am just so curious to learn about it! It may not be logical but I feel that Valcyte was my best and last chance at recovery (versus just symptom relief which I do get from meds like Atenolol.)

    Thanks again to everyone who responded. I will be stopping Famvir (per my doctor) b/c I have taken it for eight months with no improvement in symptoms or titers (EBV and VZV.) I am waiting to find out if I stop it abruptly or taper down slowly? My doctor also feels I can wait a few days and re-start the Valcyte at the lower dose again and I am planning to give it one more try but very guarded this time.
     
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  8. Sidereal

    Sidereal Senior Member

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    Speculative list of drugs and supplements that act as microglial inhibitors here.
     
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  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Also, have a look at Hip's thread.
     
  10. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Yes, Equilbrant and Inosine are the ones I was referring to. Each has made a distinct improvement. If going back down to the tolerable dose of Valcyte continues to help you, why not stick with it? Something is better than nothing. Sorry about the Hashimoto's, it's quite a complicating factor.

    My son has tried so many things, many have breifly helped a little and then made him worse, some permanently. It's crushing when that happens, so I understand what you are going through. I know it's scary to think of trying something else when the stakes are so high. The choice becomes do something and risk making things worse, or do nothing. It's a hard choice. I think it's reasonable to take a break for a while. It can be good for the soul/psyche.
     
  11. charlie1

    charlie1 Senior Member

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    @Gingergrrl I'm thinking about you :heart:. I too have been disappointed in the past due to my hopes being bust and it's devastating. I feel for you.
    How have you been feeling the last few days? Have you re-started the Valcyte and now off the Famvir?
     
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  12. Gingergrrl

    Gingergrrl Senior Member

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    I realized that I had not updated this thread in a while and sadly have now had the same akathisia/muscle agitation from the lowest micro dose of 1/32 of a Valcyte. I stopped it yesterday but the symptoms have persisted for two more days. There is no questions that they are from the Valcyte this time and it seems unlikely that I will be able to continue with it.

    I was discussing this issue with a friend who felt I might be able to have a wash-out period of a few weeks and then re-start the LDV (low dose Valcyte) on a pulsing schedule like an immune modulator. I am going to discuss this idea with my doctor b/c I initially had some great benefits from Valcyte and if there is any way to get them back, then I want to try (but I don't want to do permanent neuro damage to myself!)

    I also do not want to dissuade anyone else from trying Valcyte or LDV and the problems that I have had seem to be unique to only me (as usual...) and I just do not tolerate any medications.

    And to answer Charlie's question, yes I am totally off the Famvir as I took it for 8 mos and it did not help me. I somehow tolerated it at a normal dose of 1500 mg per day but it never helped. I wish I could have tolerated the Valcyte at a normal dose but it was not meant to be :aghhh:.
     
  13. AndyPandy

    AndyPandy Making the most of it

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    So sorry @Gingergrrl. That's so disappointing. Sending you hugs.
     
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  14. anniekim

    anniekim Senior Member

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    @NK17 when you say VGC do you mean valcyte? Many thanks
     
  15. NK17

    NK17 Senior Member

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    Yes Valcyte.

    I'd like to add a disclaimer here, actually more than one.

    Until we get solid real biomedical studies we can't really compare patient's response/non response to meds.

    Each of us has a very different medical history and there are many paths, or shall I say, encounters with pathogens which may lead to #ME.

    Everything we do, every treatment we try under the guidance of a medical doctor is still a toss of a dice, it is experimental, off label etc etc etc
     
    Last edited: Apr 20, 2015

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