Valcyte 7 weeks this Sunday

Discussion in 'Fibromyalgia Main Forum' started by Piperlilly, Apr 13, 2007.

  1. Piperlilly

    Piperlilly New Member

    I will have taken valcyte 7 weeks this Sunday. I have been told I have CFS/FM, lyme, various bacteria, EB, spinal stenosis, bulging discs, etc. etc (according to all of the pos. test results before starting valcyte)for 23 years. To tell you about myself - I was never sick in my youth. I became a very active professional person - always had to be up and doing something active when I wasn't working - attorney, swimmer, skiier, tennis, jogging, all of it. I became extremely ill in 1984 - flu & pneumonia - which never resolved. Sore throats constantly for month after month, head and neck pain of unusual type, swollen lymph glands, terrible abdominal pain, fatigue, couldn't crawl up the stairs or get out of bed. Bed bound. You know all of the symptoms - and I had them all at one time or another. Horrendous fatigue, that I never could have imagined existed until I exerienced it myself. There's no way anyone can really understand until and unless it happens to them - EVER!) All the different symptoms have been very severe. I have been one of the extremely unfortunate ones to also have unrelenting pain day after day, hour after hour minute after minute. Although it changes, the pain has been the worst symptom for me. It was so severe that I would have tried anything for possible relief. After years of this, I did. I really had no other choice. I had brain and spinal surgery. This is after researching everything, trying everything and every kind of specialist - from MDs. to alternative medical practitioners, every kind of test, diet, herbs, accupuncture, you name it I tried it. After all, I've had YEARS of this and no one was helping me. I would need to help myself because no one else could. Nothing has ever come close to working - until now. I don't know if I will be totally symptom-free, but from the first days of taking valcyte, I knew I felt different, worse actually, but the medicine was doing SOMETHING! From the first weeks, I was having the herx reactions and it was bad and its getting worse. But I actually experienced periods of time where I felt almost normal and this hasn't happened in 23 years. It was ME; I was back during those hours. I was back to my old self that I had prayed for, for all these years. For periods of time over 2 or so days I went non-stop and was it WONDERFUL! Its so hard to explain, especially since I am still taking narcotics for pain, and even though I am herxing and the symptoms are twice as bad as when I had started taking valcyte, I feel that this may be the start of my eventual recovery. Those few days have given me the hope that I may actually get well.
  2. foxglove9922

    foxglove9922 New Member

    First of all, WELCOME, piperlilly, glad you found this board. There are a few here on this board also trying Valcyte and it's encouraging to hear that you are experiencing some results.

    I will be starting Valcyte 5/9 and have been following closely the posts of others here who are traveling that road.

    A couple of questions, if you don't mind. What dosage are you on? Did you take 1800 mg for 3 weeks then reduce to 900 mg after that? Who is your physician?

    My sincere best wishes that you achieve continued recovery and please do keep us posted on your progress.

    Foxglove
    [This Message was Edited on 04/13/2007]
  3. Piperlilly

    Piperlilly New Member

    Hi Foxglove,

    In answer to your question, I am taking 450 2/day. My doctor is in Colorado with the Fibro and Fatigue Clinic.

    I am new to message boards and this is the first time I've ever posted anything. Is there anything I need to know about posting besides what's in the rules. I don't know much about internet messaging - what were the hecklers saying and why would they anyway?
  4. pawprints

    pawprints New Member

    Welcome to the board. Thanks for posting your experience with Valcyte.

    There are a few on here who offer varying experiences of herxing. I am sure they will chime in.

    I am still considering it as an option, but have not made a decision.

    Enjoy your good days!
  5. hopeforcure

    hopeforcure New Member

    Hi Piperlilly:

    I am set to start valcyte early May. I am a little worried about the possible side effects listed, but apparently the Montoya participants did not experience them. I, like most of the CFS sufferers, am desperate, so I think it is probably worth a try. Good luck and keep us posted!
  6. foxglove9922

    foxglove9922 New Member

    piperlilly,

    I'm not entirely sure where the rules of the board are located,,,,,I just try to keep my posts non confrontational and approach with an open mind. Not sure what you mean by the hecklers, but I have found of wealth of information and support here and I hope you have the same wonderful experience.

    Perhaps one of the moderators will come along with information on the rules, but in the meantime, I fairly certain you should not give out your email address or URLs that sell products.

    Best wishes on your treatment protocol. Please do keep us posted on your progress.

    Foxglove
  7. Slayadragon

    Slayadragon New Member

    Piperlilly,

    Wow, 23 years is a long time to be that sick and then to "suddenly" get your life back even a little bit. Do you feel like Rip van Winkle?

    I am rooting for you to get lots better soon. Based on everything I'm reading, it seems like a good possibility for you.


    hope4acure (and others):

    I am taking Famvir with a little trepidation and am a bit more nervous about the Valcyte.

    I definitely think it's worth the risk for me, but I've been thinking recently that discussions about how to augment the drug (e.g. with liver or adrenal support, etc.) in order to make the experience a safer or easier one might be in order.

    I've been putting some thought into this. Perhaps others would have ideas too?

    Good luck! (to all of us)


  8. dahopper

    dahopper New Member

    Hello...I will have to make this short but wanted to add to your thread. I have been taking Valcyte now for about two months. 450mg. twice a day and I feel like a new person. I am not saying I still do not have my moments I don't feel good but it is becauce I have been going non stop with energy I thought I would never see again in my life time.

    When I started seeing a huge difference in my health is when I started the valcyte....more energy (wow) at first alot more pain but my doctor said it was caused from the die off but the pain now is starting to even get less.

    Piperlilly I am glad you are seeing better days.
  9. Slayadragon

    Slayadragon New Member

    Debbie, that's terrific!!!

    It's interesting that your response has been so much faster than that of most other people.

    I know you've been on other AV's before, and wonder if that has had anything to do with it. Maybe you've killed off a lot of viruses with other drugs in the recent past and now are just getting rid of the really bad viruses that have been holding you back?

    (I have _no_ idea if this is true! It just would be nice to figure out why this is working so very well for you.)

    If you have time at some point, would you briefly note your history on AV's? I think you took Valtrex, but I'm not sure exactly when or how long.

    Thank you for reporting your progress. I am very happy to hear that you're doing so well.

    Best, Lisa
  10. foxglove9922

    foxglove9922 New Member

    Wow, dahopper,,,,,I found your post most encouraging. I sincerely your new-found health continues and please do keep us posted.....oh....btw.....did you start out at 1800 mg for the first 3 weeks?

    Best wishes,

    Foxglove
  11. ritatheresa

    ritatheresa New Member

    Well I also just started taking Valcyte I started 6 days ago. I'm taking 900 mg once a day. So far the worst symptoms for me have been emotional. Severe depression and anxiety.

    I've had a bearable headache for a few days and the exhaustion is severe, (I wouldn't say much worse than it's been), what's weird is that this morning I woke up wide awake at 6 am and was not even able to fall back asleep, that NEVER happens. Usually my mornings are a nightmare trying to get my daughter off to school. It was cool!!

    Piperlilly, your story is inspiring and even if you had one minute of seeing your old self, that must have been so amazing. I hope you continue to improve by leaps and bounds. I pray for all of us.


    Like I said the depression and anxiety are pretty bad, didn't expect this, is this uncommon? Any feedback is so very much appreciated, take care, Ritatheresa
    [This Message was Edited on 04/17/2007]
  12. Slayadragon

    Slayadragon New Member

    Emotional symptoms seem to be extremely common! That surprised me.

    If you take them as due to the drug rather than as there being anything "wrong" (e.g. with your life, your situation, other people's behaviors, yourself), they may be easier to take. At least, that's what I've found.

    My doctor said that symptoms you have tend to be matched with improvements later on. For instance, CFS sufferers tend to suffer from mild depression. Dr. Cheney says that some of it is reactive (e.g. feeling unhappy about being sick), but that some of it may be due to physiological issues.

    My doctor's belief is that the viruses are present in various areas of the brain, and cause symptoms when they are killed off. Mine have been cognitive and emotional, so I am expecting (or at least hoping) to be super-smart and super-happy once I'm done.

    It's a nice thought, anyway.....

    So hang in there!

    Best, Lisa
  13. Piperlilly

    Piperlilly New Member

    Wanted to keep everyone posted. It seems that everything, including my depression becomes worse, the worse my other symptoms are and they are still awful. My head and neck are still very painful; shoulders and low back not quite as bad; fatigue. New symptoms are weakness and pain in my legs and I feel like I have a low grade fever. Its like I'm experiencing the various symptoms that I have had in the past. Also, my chest has felt very compressed since taking valcyte making it harder to breathe. The research about viruses and the heart written by the various docs has been enlightening for me because I was close to a heart attack 2 years ago, went into the hospital and had to have stents put in. The heart problems run in my family but I wonder if any of my heart problems are due to the viruses. I don't want to sound dreadful - I'm very hopeful. I'm more than willing to go through this if it gives me back my life. Most or all of you haven't had this as long and you are in better physical condition. I truly believe this may be a wonderful treatment answer for many of us.
  14. Slayadragon

    Slayadragon New Member

    Sounds like everything for you is going along as expected.....and since I've yet to hear anyone go through this experience who didn't come out better on the other side, hopefully you can keep up the faith.

    I asked my doctor about Cheney's heart theory, and he said that he thought the heart problems were caused by viruses. I wish I'd gotten an impedence test so that I could have before-and-after comparisons. I will ask him sometime whether he's done any.

    Hang in there!

    Best, Lisa
  15. foxglove9922

    foxglove9922 New Member

    Thank you ever so much piper and rita for keeping us posted on your progress with Valcyte. I am not at all surprised about the emotional aspect of this drug. It seems to be prevalent with many who have the same effect in the early stages of the protocol.

    My physician sent me a bunch of forms to complete, most of it had to do with my mental well being and fatigue level. I'm sure they have to weed out possible depression, but since I've been with the doc for so many years, I think it's a matter of how emotionally stable I am going into this therapy. Fortunately, I have a high constitution and am not subject to depression.....just get MAD sometimes that I have the dd and even MADDER when it flares, although I will admit to being discouraged when I lay in bed during flares day after day after day.

    Hang in there guys, the good news is most people traveling this route have a rough start, but are ultimately seeing the light at the end of the tunnel over a period of time.

    My sincere best wishes to both of you,

    Foxglove
  16. ritatheresa

    ritatheresa New Member

    Yesterday was bad emotionally, felt very hopeless, anxious, fealing very fearful.

    Today I feel more positive, really can't complain of anything, usual tiredness, woke up congested, cleared up by the time I left for work this morning.

    I'm really appreciating these posts, sometimes alittle reassurrance goes a long way.

    Hope everyone is as well as can be, take care, Rita
  17. Slayadragon

    Slayadragon New Member

    Yes, I've found it interesting how much my moods have changed from day to day since starting AV treatment. It's better than feeling really bad emotionally all the time anyway.

    Glad you're feeling a little better.

    Best, Lisa
  18. ritatheresa

    ritatheresa New Member

    Hope your feeling good as well, Rita


    [This Message was Edited on 04/18/2007]
  19. ritatheresa

    ritatheresa New Member

    So far I think I'm tolerating the Valcyte pretty well. My throat has been hurting somewhat, but I had some pretty severe depression which seems to have lifted for now.

    Something very weird I've experienced in the last couple of days is that my fatigue level has changed. I'm still very fatigued but am functioning alittle better, usually during the day I feel as if I don't take a nap I'm going to pass out. I haven't felt like that all week. I feel alittle better.

    I'm nervous about my body going haywire in the near future. Right now I'm trying to get through each day and not worry so much about what's going to happen, that helps me alot.

    So how is everyone else doing? I really hope ok, peace, Rita
  20. ritatheresa

    ritatheresa New Member