Valcyte Need advise from current users

Discussion in 'Fibromyalgia Main Forum' started by foxglove9922, Feb 10, 2007.

  1. foxglove9922

    foxglove9922 New Member

    Hi everybody,

    Just picked up my Valcyte Rx today. I'm debating on when to start. Here's why, I just started taking 2 courses at a local college to try and regain some of my cognitive thinking back. English and Algebra. I have a break coming up in mid March.

    For those of you who have been on Valcyte, when the did herx begin? Was it right off? 3 weeks or more later? and how long did the terrible herxing last? On a scale from 1 to 10, how intense was it? Were you able to bathe by youself? get meals?

    I have a very limited support network and need to have my ducks lined up before I start.

    I'm no stranger to herxing but want to have an idea what's ahead.

    Any responses would be greatly appreciated.

  2. ask2266

    ask2266 Member

    The Montoya intial study says that worst of the herxing was between week 2 and week 4 and that some of the responders were bedridden for several weeks. Not many details, I know. Good luck!!!!!!
  3. foxglove9922

    foxglove9922 New Member

    Thank you for that information, bumping for more responses

  4. Slayadragon

    Slayadragon New Member

    What dosage are you going to take?

    I personally am of the opinion that planning to do anything while taking strong antivirals is walking on the wild side. Even if you were capable of doing it, using your strength for other stuff rather than healing sounds like a suboptimal strategy.

    Do you have a way to get some food while you're on the Valcyte, if you're not able to go out? Otherwise I think I'd be inclined to make some stuff (soups, stews, etc.) that you could freeze now and then resort to if you're really not up to going out.

    This really is quite the challenge, isn't it?

    Best, Lisa

    P.S. Am I wrong, or are you currently taking Valtrex? If you are, how is the herxing going?

  5. foxglove9922

    foxglove9922 New Member

    lisa, I did herx like the devil for 4 days after I upped my Valtrex from 500 mg to 1000 mg. It was horrible, couldn't shower, eat, just made it to the bathroom and back during that period. You probably make a good point,,,,I should be relaxing completely during this stressful time with the Valcyte. School's out the first week of May so I suppose it's not that much farther out. I was thinking about going up another 500 mg on the Valtrex next week and see what happens.

    ruby, I just read you story on another post. Gosh I'm so sorry you had to discontinue as I'm sure your hopes were high too that this may be a way out of the CFS mess. Thank you for the information on the herx.

    Stovetop - I was hoping to hear from you as I'm aware your inital post was inadvertently deleted and had a wealth of information on it but couldn't remember all the details. I'm DESPERATE to find a way out of this but shouldn't let this overrule my common sense.

    As I said before, my support network is very weak but I've found a ladies group of 12 woman who pick a project to help out someone in the community rather than the card games and chit chat groups they used to do. All of them agree Meals on Wheels would not probably give me good, nutrional meals....they want to make meals and bring them to me everyday, run errands, pick up my house, and basically do anything that I can't. I found out about them through my yoga instructor and I've talked with 2 of them and they just can't wait to help me out. They want to know exactly what my food allergies are, what I do like to eat and are willing to give me rides to the docs, etc. etc. I can't believe how lucky I was to run across this. My daughter will help me bath every few days and assist me to the bathroom. So I suppose most of my bases are covered there.

    Why do I want to finish school? Well this is my first semester and it has given me a purpose to life that was really missing. My life was almost total isolation before I started going 2 days a week for 3 hours a day. I know it doesn't sound like much, but, it's been an effort given my current level of functioning and I'm doing pretty well with my grades. I also got a grant as a poor/disabled person and if I don't complete or get less than a C, this grant will be discontinued for me and I was looking forward to going back this fall.

    Still debating on the proper way to proceed wtih this Valcyte.

    Thanks a bunch for all the information and advise.

  6. roge

    roge Member

    good point stovetop and agree

    be careful foxglove, give it the chance it deserves, don't risk it with school. school or anything else for that matter with always be there down the line, your health may not. Your health and doing this valcyte treatment is your #1 priority.

    just my 2cents.


  7. suejackson

    suejackson New Member

    Foxglove -

    I'm not sure if my experience wil be helpful, since it's still pretty limited.

    I'm starting my fourth week on Valcyte. I haven't experienced any sudden worsening (yet?), though I've been feeling pretty crummy much of the time. I started a bad crash on January 1 and have been feeling poorly since then, so it's hard to tell if my feeling bad now is just more of the same or a reaction to the Valcyte (it's very rare for me for a crash to last more than a day or two these days). I also had bronchitis last week, which thoroughly knocked me out - another factor muddying the waters.

    I've noticed the aching teeth that others had mentioned (I wouldn't have realized this was a Valcyte side effect if other hadn't mentioned it - I probably would have run to my dentist to find out what was wrong!). I've also noticed lower than normal stamina. I've had periods of feeling relatively good, but they don't last long. Making dinner or helping my kids with their homework can knock me out. I've also noticed times in the past week or so when my knees hurt. Pain has never been a big CFIDS issue for me, but I often get achy knees when I crash. I've had some mild insomnia some nights (better since I switched to taking Valcyte in the morning instead of the evening).

    Some things to keep in mind:

    I'm on a much lower dose of Valcyte than most people I've read about: just 1 pill (450 mg) per day. There doesn't seem to be much experience with a lower dose, but it seems logical that the herx reaction might be less acute.

    I'm relatively high-functioning compared to others with CFIDS that I know of. I can usually do about 40-50% of what I could do before I was sick (that's high for CFIDS!). I have to sleep, nap, and rest a lot, but in between I'm usually able to cook, socialize, write, and shop (in small doses). I've also had minimal cognitive dysfunction, something that I'm very grateful for. Finally, I've had CFIDS for almost 5 years, far less than some of the people I've read about who are trying Valcyte.

    So, these factors might mean that I won't have as severe a worsening as others have. Who knows? Frankly, I would welcome a sudden worsening right now, just as proof that Valcyte is working for me. Right now, I'm still not sure whether I'll respond to it.

    Hope that helps. I'm also interested in hearing about others' experiences, particularly anyone also taking a lower dose.

  8. foxglove9922

    foxglove9922 New Member

    Many, many thanks to those that responded. I'm taking it all in and agree that probably it would be wise to just wait until I finish this semester so I can fully concentrate on the Valcyte and my body.

    Stovetop - like the username, BTW, wouldn't have thought of that! Anyway, since you've been there, done that,,,,I respect your opinion. You are so much farther along than many others just starting out.

    Roge - hey, thanks for the input

    Sue - I'm wondering too why your physician opted for the lower dose. I suppose we're all traveling uncharted waters and it will be interesting to see how we all fair in the end. Great to see you on this message board and if I haven't said it before, WELCOME.

  9. Slayadragon

    Slayadragon New Member

    I think you're herxing now.

    When I first went on the Famvir, I felt the way that you describe. Like I was worn out from doing too much, except all the time.

    I attributed the symptoms to travel fatigue (I went out of town that weekend) and blithely increased my dosage.

    I immediately crashed big-time. It was only then that I realized that the fatigue I had felt at a lower dosage actually was moderate herxing.

    I am still feeling that moderate herxing three months later.

    Obviously some doctors want patients to take big doses of Famvir, to minimize "resistant strains." And accordingly, those patients take big nose dives.

    I don't know what way is best, but I think an argument can be made that my own doctor's gentler approach eventually will be shown to be just as effective or even more effective. I'm certainly not going to want to start at more than 450 mg per day (and may never go over that amount).

    I believe that regardless of what dosage of AV I'm on, pushing myself to do anything is not a good idea. My experience thus far is that my body needs every bit of energy to handle the die-off. Hopefully at some point my own immune system will start to kick in again, and that will require every bit of energy I can give it as well.

    I've been periodically doing a moderate amount of consulting and travel throughout my illness, but have purposely put those things aside at this time.

    I think there's a real chance that I might get wholly well from this treatment, and I want to give my system as much help in doing so as I can in order to maxmize the likelihood.

    I hope you're having a good week.

    Best, Lisa

  10. keke1972

    keke1972 New Member

    I have been taking valcyte for one week and my fatigue is somewhat worse. I feel very sleepy on it and that is one of the side-effects listed on the medication. I think if you take it while in school you may feel worse because of the added stress. I know when I was in college the stress was very hard on my body. I think you need to rest in the beginning to see what side-effects you may have. The medication seems to cause confusion also for me so far. I am really having a hard time focusing. Things seem blurry today. My vision is blurry a lot anyway. Yeah, I think your better off waiting. Do you drive to school? That may also effect you while on the medication. You may not have the same problems I am having. Take care, keke1972
  11. chngthnmtoME

    chngthnmtoME New Member

    I'm on 450mg. only, but I feel it. It's like someone is irritating my spine. I feel this constant- not itching, something... And I've thrown out my back and am very shaky. Am just coming up to 2 weeks now. Have no choice but to continue working full time, though I realize this is way less than optimal. Also, can't eat a darn thing. Only little bits here and there.
  12. Forebearance

    Forebearance Member

    I wish you all the best, Foxglove!

    Stovetop, I thought maybe you were a cook or you really, really liked stuffing. :)

    Hey, Changethenametome, I have thrown my back out, too! It has been hurting for weeks now. I can't figure out if it's my mattress, or what. I never thought it might be my anti-viral treatment! (I'm doing anti-viral enzymes) Comparing notes is so helpful.

  13. suejackson

    suejackson New Member

    Lisa -

    You made my day when you commented that you think I'm herxing! I've been waiting for some sudden, obvious sign that the Valcyte is working and getting kind of down that I just feel so-so. I was also glad to hear that you're planning to take only 450 mg per day also. I've been worrying that my dose is too low. I'm not going higher simply because my doctor feels uncomfortable going any higher. She says that I'm an experimental group of 1 for her!

    I've begun to do a very small bit of consulting (my old career), only because the perfect situation happened to come up at the start of the year - a small local company where I can work in half-day increments on-site and do some stuff from home. It's not the best timing CFIDS-wise, but I got my first check tonight and we are all on Cloud 9!

    Anyway, I did a half-day of consulting yesterday morning. I felt OK and made it through our morning session just fine but was in terrible shape today. I woke feeling horrible and had to spend most of the day in bed.

    So, I think I'm experiencing what you've described. I do OK if I rest a lot and take it easy, but the smallest effort can really knock me out.

    So, maybe the Valcyte is working, after all! Thanks for renewing my hope.

  14. lanya

    lanya New Member

    for those of you with tooth pain, do you think its from grinding your teeth at night? or just random toothy pain from nerve irritation?

    i'm wondering because when i'm herxing, i definitely have a lot of jaw tension, particularly at night. even with a nightguard (a bionator, actually) i get lots of pain, either from grinding or from referred trigger point pain in the jaw. that happened to me on valtrex; wondering if it is will be the same with valcyte.

    very useful thread folks. thanks for sharing your experiences, from those of us who may come after you.
  15. Slayadragon

    Slayadragon New Member

    That's interesting that increasing the Valcyte caused you to crash so heavily for four days but that now you seem to be more or less back to normal. My own herxing appears thus far to go on from here to eternity.

    Anyway, if you continue to take the Valtrex at a moderate level for another two months and then start on the Valcyte, you will be echoing my plan almost perfectly. You're even at about my level of the AV you're on now (since as far as I was able to figure out, 1333 mg of Valtrex = 500 mg of Famvir).

    My doctor's goal is to chip away at a good chunk of my viral load with the less toxic drug for a while. (And obviously this is working.....otherwise I wouldn't be herxing so much.)

    Once I've gone as far as I can with the Famvir (he doesn't want to raise the dose past 500 mg), we will switch to the Valcyte. Hopefully with fewer viruses to kill off at that point, the die-off will be less extreme and I will be able to stay on the drug for less time. This should decrease the chance that I will have bone marrow problems or some other issue that would force me to discontinue the Valcyte and sadly give up on the whole experiment.

    So perhaps your decision to wait until school's out is a good thing in terms of your treatment plan too. Even if you're worried about resistant strains, I would think that Valcyte kills different strains than Valtrex.

    As for planning for the Valcyte use, obviously it's good to get your living arrangements in order.

    Even more important may be to get your body in as good a shape as possible, so that it can better tolerate the stress from the Valcyte. My doctor believes this, and I have been repeatedly grateful throughout my Famvir experience that my body is indeed in reasonable shape.

    I don't know how much you've done already, but considering each of the issues below seems important.

    * Addressing yeast problems. I started a thread a while back called "Controlling Yeast" which became pretty comprehensive.

    * Getting adrenal testing done. My doctor believes adrenals are key to surviving the stress of herxing on AV's, and this is consistent with my experience thus far. Even if adrenals are normal, being prepared to give some extra support if you get wrung out during treatment may be a lifesaver. I just wrote a post on that in response to a question by packfan.

    * Considering testing for food allergies. These are supposed to be a factor for at least 50% of CFS patients, even though few people investigate the area. My experience is that eliminating food allergies has made an enormous effect on my own health. My doctor says that Great Smokies' test is quite accurate; it's about $300.

    Note also that the day after exams probably won't be the best time to start either. If the body is feeling as rested as possible, it will be in better condition to tolerate the stress.

    By the way, to reconfirm the idea that waiting until the school term is over, here are some results on a recent study on stress. Obviously your goal is to allow your own immune system as well as the AV to kill these bugs, and so waiting until you're more relaxed seems the optimal strategy.

    Best, Lisa


    Dr. Ronald Glaser- Ohio State University

    (Likely Effects of Stress in CFS)

    -- Looked at lymphocyte function in medical students before exams and after vacations. After vacation had 18,000 IFN U/ml, before exams went down to 888. Also had reduced memory T cell response before exams, and reduced T cell killing by B cells before exams.

    -- In patients with normal immune systems you do not have to get a rise in titer when there is virus reactivation, however showed that med students had higher EBV VCA antibody titers, and higher herpes simplex I AB before exams than after vacation.


    Note that lymphocytes include Natural Killer Cells and other white blood cells. NKC's obviously are important in CFS.

    Even more relevant is the fact that WBC's are critical with regard to using Valcyte, since if they drop too low the drug must be discontinued.

  16. Slayadragon

    Slayadragon New Member

    After a couple of weeks on Famvir, my teeth and jaw got all messed up too. My teeth ached, my gums swelled, my jaw kept popping. These were pretty unprecedented symptoms for me.

    My doctor seems to believe that every strange symptom I get means that viruses are being killed in that part of the body. In this case, his explanation was that viruses are buried in the gums and jaw, and that the Famvir was killing them off.

    This isn't entirely unreasonable, I don't think. CFS patients do seem to have a lot of dental problems.

    In any case, the problem went away after a while for me. I will see if it comes back later, as the Viral Wars continue.

    Best, Lisa
  17. Slayadragon

    Slayadragon New Member

    Thanks to all the Valcyte users for sharing your symptoms in minute detail.

    I guess it doesn't really matter whether I have the same Valcyte die-off symptoms as others, but I'd like to know anyway.

    Keep making notes as new symptoms crop up, please.

    Best, Lisa
  18. melissaz

    melissaz New Member


    I have been doing a lot of research on Valcyte, but am under the impression that insurance won't cover the cost of the drug for CFS. It seems like an awful lot of people on the forum are taking this, but at almost $2,000 a month, I was wondering how everyone was covering the cost?
  19. Slayadragon

    Slayadragon New Member

    My insurance company (through my husband's employer) says this is covered under my plan.

    [This Message was Edited on 02/14/2007]
  20. Slayadragon

    Slayadragon New Member

    It seems pretty reasonable that higher doses of Valcyte would cause more moderate symptoms. That's certainly been my case with Famvir.

    You also were in particularly bad shape compared to most patients before you started the drug. Even if your HHV-6, CMV and EBV measures weren't that high, you may have had levels of other herpes viruses (as of yet undiscovered) that were astronomical. Therefore, your die-off accordingly might have been especially fierce.

    It's my impression that the dosage used for transplant patients and AIDS patients (the approved use of the drug) is fairly low (450 mg to in certain cases 900 mg). Also, transplant patients probably get it preventively and AIDS patients only when they get CMV. Their total herpes family load may be lower than ours, therefore.

    That could explain why you got more severe symptoms that weren't listed on the package inserts. It would be informative to know what those symptoms were, if you ever feel more inclined to share.

    This reminds me of the fact that---even though AIDS patients often have low NKC activity---they do not seem to have whatever it is that we have. AIDS patients are by and large pretty active until they get quite close to death. I don't know what to make of that fact in terms of what's causing our disease, but it's interesting.

    What I would like to know is whether Montoya's or Lerner's patients have continued to improve _after_ they stopped taking AV drugs. If so, this would seem to mean that their own immune systems had started to work pretty well. (Or, perhaps, that without the burden of the viruses, their bodies were able to engage in physical repair that had been put aside in favor of virus fighting.) I've only seen so far that recovery has been maintained, which is different.

    Do Montoya and Lerner pulse the drug after patients are done with it? Or continue it at a low level?

    My doctor says that his patients continue to improve long after they stop the drug, as their own immune systems continue to fix things. His use of the drugs is based on making that goal more likely to happen.

    This is a very interesting time, since it is uncertain which methods will end up really helping people. Hopefull we will see those results soon.

    Best, Lisa

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