Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Valcyte and Neuropathy.

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Ema, Dec 18, 2014.

  1. Ema

    Ema Senior Member

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    In the last week, I seem to have developed tingling and prickling sensations. These occur mostly in my legs, with occasional stabbing pains in my thighs and on the top of my foot. I'd had brief,random episodes of this once or twice before in the past few months but it always passed quickly.

    The prickling is usually also accompanied by anxiety and sweating feet and nausea. I've also noticed more muscle weakness especially in my legs.

    I have a whole list of possibilities and am wondering if Valcyte neuropathy comes on suddenly like this? I've been taking 1800 mg for just over a year. I dropped down to 1350 last week, then 900 and then stopped it yesterday totally. If it is the Valcyte, I wonder how long it will take to improve? I wasn't really ready to stop it yet but the prickling and anxiety is just awful.

    I also think it could be related to low estrogen, starting high dose hydroxyb12, or possibly even a lyme herx from roxithromycin. I've stopped all these too (except the estrogen). Too many variables and I'm flummoxed.

    I already take most of the supplements too that are meant to help with neuropathy. Mostly I just really need this to go away because it is freaking me out! :(

    Any thoughts? Does this sound like Valcyte neuropathy or is there no way to know but to wait and see if it gets better?
     
  2. Tired of being sick

    Tired of being sick Senior Member

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    If you have a form of Dysautonomia such as POTS(especially),Valcyte can make it much worse..

    And from what I understand Valcyte can actually produce POTS on to someone who never had it before.

    This crap in my opinion should not be taken
     
    Last edited: Dec 20, 2014
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I wonder if its a sign of infections in the nervous system reactivating??

    I do know in guys that if estrogen is lowered too much it can cause alot of muscle pain etc which feels like a neuropathy type pain.

    I think your right, too many variables to know.

    I would think it would be something new you have started rather than valcyte you have been on for awhile.

    I use lyrica for neuropathy pain i get in my legs at night that disrupt my sleep. Was just using lyrica at night but not working 100% and added naprosyn at night also which has helped alot of late.
     
  4. zzz

    zzz Senior Member

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    All of these symptoms except muscle weakness are known side effects of Valcyte. However, Valcyte can also reduce your electrolyte levels, which may be causing the muscle weakness.
    Yes, it can; it did for me.
    It varies by person. For me, drug-induced peripheral neuropathy didn't improve unless I took a short course of macrolide antibiotics. These include erythromycin, azithromycin, clarithromycin, etc. Erythromycin is the most benign of these; it's also been around so long that most of the good gut flora are immune to it.

    But that's just my experience. The problem may go away on its own; give it a little time. It's not harmful as it is.

    And yes, this sounds exactly like Valcyte neuropathy, and your other symptoms are possible Valcyte side effects as well. Einstein said, "A good theory should be as simple as possible, but no simpler." So I would theorize that all these symptoms are just a Valcyte reaction, and have nothing to do with estrogen, B12 (which is actually used to treat neuropathies), or roxithromycin. Although the peripheral neuropathy may take a while to disappear, the other symptoms should go away fairly quickly once you stop the Valcyte. Only if they don't would I start wondering about other causes.

    Assuming it is the Valcyte, you probably can't take it anymore.
    I don't think so, since it's a well-known side effect of Valcyte.
    Side effects can arise at any time. I had been on Valcyte for five years when I developed peripheral neuropathy from it.
     
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  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    @zzz I'm not saying it isn't valcyte but think there could be many things are a possible cause. I think it's reasonable to think that a new symptom is from a new treatment added. I think it makes sense to rule the new things out first and work backwards from there.

    everything is speculation at this stage as there are many causes of neuropathy.
     
  6. Ema

    Ema Senior Member

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    I've stopped all the new things as well as the Valcyte so hopefully that will cover all the bases and then I can add the new things back in if things get better again hopefully.

    Today my feet and legs feel less prickly but I'm starting to notice it in my hands as well. Is it normal for it to move around like that too?

    I still keep freaking out, thinking about things like Guillain Barre and other terrors. I also hope it's not a viral reactivation.

    The anxiety feels like a revisiting of the Valium withdrawal from this summer but it seems odd that I would get new symptoms related to that 3 months after I finished my tapering.

    @zzz, I wonder what it is about the macrolides that helped cure it? Roxi is a macrolide and I also have some azithromycin here as well.

    @heapsreal, I think estrogen also causes parasthesias in women. I upped my estrogen this week but it didn't change the prickling unfortunately.

    It's just Valcyte though, right? I should be OK still with Valtrex and Famvir?

    Thanks!
     
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  7. zzz

    zzz Senior Member

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    This sounds like a good approach to me.
    I only know about my own experience. I have a weakness in my right arm (long story), and I originally felt the peripheral neuropathy only in my right hand. When it was bad, I felt it in my right forearm too. And when it was really bad, I would feel it in my left hand, and sometimes my left forearm. Occasionally when it was bad, I might feel a tiny bit in my legs. It would fluctuate, but it didn't really move around. I don't know how typical that is, though.
    I know that when our bodies have done so many weird things to us, it's natural to start thinking that they could do just about anything. But the various "terrors" you refer to tend to be rather rare. If you really think you have the symptoms of one of them, it's important to talk to your doctor, of course. But in general, these aren't things that occur with great frequency for us. Although it's hard to pin down the exact causes of your symptoms right now, they don't sound outside the norm for ME/CFS and Lyme (whatever the "norm" is).
    Yes, that does seem unlikely. Valcyte has various neurological side effects, which I've experienced myself, and it's possible that your cutting off the Valcyte has caused the anxiety. Temporary symptomatic treatment for the anxiety may be all that's needed.
    That's a good question; I really have no idea. I discovered this completely by accident. I had peripheral neuropathy after a short course of tinidazole, and after six months it still hadn't gone away, or even decreased. Then I came down with an infection for which I had to take azithromycin. The peripheral neuropathy disappeared within a few days of starting the azithromycin.

    Another time, I had this problem with a different drug. This time I tried erythromycin, and it worked just as well.

    I can't say for sure whether this would work for everyone, or even if all macrolides would do it, but it may be worth a try if this problem doesn't go away..
    As best I can determine, Valcyte is the only one of these drugs that causes peripheral neuropathy. All of these antivirals share some side effects in common, especially the GI side effects, but these tend to be more severe in Valcyte. Valtrex and especially Famvir tend to be much better tolerated by many people.

    What virus were you taking the Valcyte for?

    Also, after @heapsreal's comment, I thought about your situation some more, and realizing from your post that you have Lyme, realized that some of your symptoms may be due to that. Your approach of stopping all the new meds may be very helpful in clarifying whether or not that's an issue.
     
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  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    @Ema you have had a good stint on valcyte, so probably time for a break.
    I think staying on something like famvir is a good idea. fingers crossed, some people have improved once they come off valcyte also.

    It seems a few people do have issues with valcyte with different things eg for me it was neutropenia. I starting to think 6 months is long enough for most people, if one doesnt see result in 6 months than could be other things going on. I also think that after doing an initial course of 6 months that maybe its a possibility that if relapse occurs that short courses of valcyte could be used. famvir/valtrex used when one had completed a course of valcyte.

    Are you going to try the lyme treatments again down the track? Its hard to tell whats going on sometimes, is it because of a treatment or is it just cfs/me symptoms?

    good luck.
     
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  9. Gingergrrl

    Gingergrrl Senior Member

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    @Ema While I don't have anything constructive to add to all the great feedback you've already gotten, just wanted you to know I am thinking about you and hope this entire thing gets sorted out soon and you feel better.

    It is so maddening to not know what it causing what when you are trying different treatments at the same time. It sounds like you have a good approach moving forward.
     
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  10. Ema

    Ema Senior Member

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    CMV and HHV-6. I am taking Valtrex for EBV.

    I do too...I'm going to ask my doctor to change the script from Valcyte to Famvir. Is the dose still 1 g four times a day? It can be combined with Valtrex too, right? I'm taking that 1g four times a day as well. I wonder if that dose should lower as well or if it doesn't matter?

    I'm still going to be doing Lyme treatments. I just stopped the new antibiotic I was on (roxi) and went back to Ceftin/azith which I had been doing fine on previously.

    I'm still not convinced it's not hormonal or a resurgence of Valium withdrawals though I guess only time will tell. Whatever it is, PLEASE go away!!! In the meanwhile, I think it's better safe than sorry with regards to the Valcyte.

    @Butydoc, I'd love to hear your experience with peripheral neuropathy and Valcyte. How long did it take to go away once you stopped it? Did it move around your body or was it mainly confined to one place? Thanks!
     
    Last edited: Dec 20, 2014
  11. Kati

    Kati Patient in training

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    1800 mg seems like a big dose, as mine was 1800 mg daily for 3weeks as loading dose followed by a maintenance dose of 900. i haven't experienced any neuropathies.
     
  12. Butydoc

    Butydoc President

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    Hi Ema,

    I never developed peripheral neuropathy from Valcyte. My liver enzymes became elevated and my creatinine clearance was diminished. I stopped all medications and subsequently the abnormal lab results normalized. I did have and still have occasional parathesias which are transient in nature and occur in different parts of my body. They usually occur when I'm not feeling well.

    Best,
    Gary
     
  13. Ema

    Ema Senior Member

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    An update...I'm not convinced that the Valcyte is the culprit here, though I have not re-started it at this time. Instead, I'm going to stick with the Famvir for a while and see how it goes.

    I did re-start the roxithromycin and the prickling sensations intensified big time after diminishing considerably during the break. I stopped it again and the prickling got better again, especially towards the end of my cycle. It was probably about 98% gone.

    However, once my cycle started, the prickles were back, even without the roxi, so clearly it's a combination of things. I'm also suspecting a flare of bartonella because of the foot pain. So I've switched to clarithromycin to see if that will help and be more tolerable. I HATE PRICKLING!!

    Also, I am now wondering if it has something to do with the LDN increasing Th1 cytokines and thus interferon gamma since they both started in the same time frame. I also noticed an uptick in the prickling when I added pine cone extract which also is a Th1 shifter.

    I found this article interesting as well:

     
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