Starting Valcyte tomorrow!

Discussion in 'Fibromyalgia Main Forum' started by Smurfette17, Feb 10, 2009.

  1. Smurfette17

    Smurfette17 New Member

    So I'm finally starting the Valcyte tomorrow. I had to postpone over and over for different reasons-- first my liver enzymes were a touch elevated, then I had the stomach flu...

    I'm supposed to take 450mg once a day, then 450 mg 2x day, then 900 am and 450 pm.

    My last HHV-6 titer (from about 2 months ago) was 1:160. This is the highest it has been.

    I really hope the Valcyte helps because just the Valtrex/Famvir (for EBV) over the last 3 months hasn't done much. In fact, though my EBV is now negative, I feel worse than ever.

    I am really nervous about the Valcyte. On one hand, I am scared of feeling worse. On the other hand, I am scared of NOT feeling worse since I know feeling worse is a good sign.
    When can I expect the worsening? After 2 weeks?

    Also, apart from the worsening, are there *side effects*? Dr. Lerner said that it wouldn't cause GI issues, "just" extra fatigue. I'm doubly nervous because I'm in the process of reducing my Ativan daily dose and that has been hard on my body-- more fatigue, almost total lack of appetite, more anxiety and increased sensitivity to sound/light.

    Wish me luck, guys!
  2. emmally

    emmally New Member

    I think everyone reacts differently. Just try not to think to much about it..that helped me. You might have it really really easy and get better really fast...:) Well you can ask me any questions if youd like, I am going on month 9 so I consider myself somewhat of an expert....but I had much higher titers to hhv6 in the beginning of treatment and no active ebv. I am one of those rare ones who only has hhv6 and nothing else of significance...I dont know if thats good or bad...:{
  3. ladybugmandy

    ladybugmandy Member

    hi smurf. i am very glad you are starting valcyte. for me, valtrex alone didn't do much either..valcyte seems to help somewhat so far.

    i dont know if i had die off or if it was just severe CFS, but i felt some worsening of my CFS symptons on the drug, particularly brain fog.

    i get tired on valcyte so i would say it helps me sleep...but i dont have major insomina as some do.

    best of luck
  4. Smurfette17

    Smurfette17 New Member

    I took my first dose this morning-- I'm still alive :) I really hope it doesn't interfere with my sleep or decreases my appetite-- I'm having enough issues with those as is.
  5. dswanteck

    dswanteck New Member

    Valcyte made me more tired for the first 6-8 weeks, but as you said, it was a good sign.

    I've had elevated titers to HHV6 (baby rosiola (?)and EBV (mono) at various times depending on if it was cold and flu season or if I lost a lot of sleep, etc.

    They always seem to come down or go back to normal eventually at least for me.

    I've tried valtrex although I've never had cold sores or anything like that, it just made me tired and had some other side effects, but other people have good results with it.

    I've been on valcyte for over a year. I took a two month break from it , when I started taking antibiotics for some lyme test abnormalities. Off of valcyte I felt worse, but initially the antibiotics can make me tired sometimes as well.
  6. sascha

    sascha Member

    i agree. take it as it comes- whatever happens. i took it for 5+ months and was glad when it ended, but also glad i took it. you know it will end at some point. Dr. Montoya assured me there is no correlation between how you feel while on it and its eventual effectiveness.

    i had many reactions to it. rarely didn't feel its impact (very rarely). the trip is different for everyone. my advice is to take most excellent care of yourself through the course of treatment. don't be surprised by anything that comes up. do the testing to monitor progress (esp. with liver function). do everything you can to make life easy for yourself. i pretty much hibernated through it. at some point i was able to enjoy reading again and got interested in historical fiction. i bought lots of second-hand books from; i built up quite a collection that i later donated to a nearby library. they helped see me through.

    as is typical for people on valcyte, my brain seemed to clear up and be able to focus better. after the valcyte ended, i went on valtrex, then, as that was expensive for me even when just paying co-pay, i went on acyclovir, which i am still on. my HHV6 came down from over 10,000 to 154. Big drop! also HSV-1 came way down. i never tested positive for EBV.

    i am still on the comeback trail, months and months later. several cfids symptoms have left me, but i still need to regain strength and energy. one really good thing- sleep and napping now refresh me, whereas before i could sleep and sleep and didn't feel better. i WAS able to sleep throughout the valcyte.

    more advice >>>rest rest and rest some more. that is our mission. Dr. Montoya kept emphasizing this. do not ever overdo. i felt ok some months after finishing the valcyte and made a trip to the east coast- probably should not have done that. resting is your main priority while on the valcyte and for a year or so afterwards. Dr. Montoya says we jeopardize our healing if we don't do this.

    very best of luck to you- Sascha
  7. ladybugmandy

    ladybugmandy Member

    so glad you are doing better!

    no correlation between how you will do eventually and how you feel while on the drug? wow! thats quite a statement! wonder if there is real hope for me yet!

    valtrex become generic late this year, by the way!...i think ranbaxy will be the first company with the generic form.

  8. Smurfette17

    Smurfette17 New Member

    Oh my god, I feel so crappy. It started on the afternoon of day 6. I feel so fatigued that I'm just dragging around. I feel "viral", fluish-- my eyes burn, my throat is scratchy. My anxiety feels higher, but maybe that's because I feel so physically bad. I feel like my energy is close to 0. Also, my joint pain is a lot worse.

    I thought it was too soon for this too happen on Valcyte (I only reached the 1350mg dose yesterday). I don't know if I can tolerate weeks of this. I'm seeing Dr. Lerner in a week.

    I really hope this isn't something else. It's bad enough to feel this sick, but at least if it's from the Valcyte I can mentally hang in there better.
  9. emmally

    emmally New Member

    You gotta dig deep and do it...There were times where I would be crying so hard going through it and though I couldnt do it anymore. But it gets better and the time will fly be. I cant believe its been 9 months.......
  10. ladybugmandy

    ladybugmandy Member

    i think it means its working. ..hang in there! i was reduced to tears many times too.

    19 months on valcyte for me and some improvement but still very long periods of severe severe CFS

  11. ladybugmandy

    ladybugmandy Member

    may i ask how long you have had CFS?

  12. Smurfette17

    Smurfette17 New Member

    Sue, I've been sick for a little over a year. I had mono January 2008, was very sick for 3 months, but seemed to be doing much better by mid-summer. But then I crashed badly in August and went to see Dr. Lerner.

    My HHV-6 titer isn't even that high (1:160) so I'm not sure why my body is herxing so quickly.
    Today sucks again. I really hope this doesn't drag out. With the Valtrex, it took 2 weeks for me to herx, then the intense part lasted just a week.

    Also- did anyone notice an worsening in sleep? I'm noticing that, despite my sleep meds. Maybe I should take the night Valcyte dose earlier?
    [This Message was Edited on 02/19/2009]
  13. Smurfette17

    Smurfette17 New Member

    Hi everyone,

    I saw Dr. Lerner yesterday (2/25) and of course told him how horrible I feel on the Valcyte, after being on it just for 7 days. He was very happy to hear that. He said the usual: excellent sign, I have to persist, my odds are good because I haven't been sick that long, etc etc. The pep talk!

    He said the initial worsening can last 2-6 weeks. 6 weeks! Long time! Although it sounds like some of you felt bad the whole time on it. I'm so scared.

    Also, I am glad to be on the Valcyte, as my last HHV-6 titer pre-Valcyte was the highest ever. It was 1:640-- it went up 4 times from November! First it was 40, 80, 160... and now 640. It freaked me out, but made me glad I'm on Valcyte. The high titer also coincided with a horrible crash I had at my parents (bed-ridden), so maybe that was the reason.

    My EBV has been negative now for about 3 months, but he continues to keep me on Famvir. I think to be safe, but I don't think I need it.

    Hanging in there...
    [This Message was Edited on 02/26/2009]
    [This Message was Edited on 02/26/2009]
  14. Smurfette17

    Smurfette17 New Member

    I need help-- I don't know if I'm having an actual cold or Valcyte side effects.

    I'm on my 3rd week of Valcyte now. Now I have a sore throat. With CFS, I usually get a scratchy throat every few days or so (not really bothersome, almost like when you talk too much or scream at a concert). But now, I have a real sore throat and some post-nasal drip.
    Can this be from the Valcyte? I'm waiting to see if other cold symptoms develop. I haven't had a cold or flu since the CFS started a year ago and I don't even know how to differentiate my usual CFS misery from other illnesses anymore.

    I feel also extremely, extremely drained and depressed today. I get so angry when I get with multiple things at once, like having to endure the Valcyte herx + getting a cold at the same damn time. It doesn't seem fair.
  15. emmally

    emmally New Member

    I never got a sore throat but did have the weak raspy voicey you speak of..Well all I can say it my throat strated to hurt and I had tons of congestion and runny nose at the same time and I went to the Big L and I had strep and sinusitis and some sort of bronchitis. And I know exactly what you mean about not differentiating symptoms... But since I am a bit better now, oh boy could I tell that it was strep and sinusitis and not hhv6. It knocked me right on my a%%..I would tell L because you have to treat infections....
    [This Message was Edited on 02/27/2009]
  16. Smurfette17

    Smurfette17 New Member

    You know, what sucks is that I was JUST THERE on Wed. Then yesterday afternoon (Th), this started. He didn't check my throat on Wed and since I wasn't having issues then, I didn't remember to ask him... Rats.

    I think I'm going to wait until tomorrow to see if other symptoms appear (like congestion, etc), and then call him. I did take one Tylenol just (I know we're not supposed to on the Valcyte but I feel so fluish).

    So did he treat your infections with antibiotics? Did it work?
  17. emmally

    emmally New Member

    Yes he said I had to be treated right away. I had a bad swollen throat, fever of around 101 and sores in my mouth and lots of congestion and a bit of a cough. I also sounded very hoarse... I went on an antibotic for 10 days. I also too had a known exposure to the strep virus since one our house staff had it and I did not know until it was too late.. Yesterday was the last day of the antibiotic, thank gosh...Man that was a rough ride being sick and than on valcyte and an antibotic. But my liver stayed perfect...I think I conditioned it well in YES it worked....everything is pretty much gone except for still a bit of congestion and cough....that was a rough ride......maybe you just have a cold, that can cause a sore throat too....
    now I just have to rest extra so I get back to where I was before these darn infections came seems like theres always something holding me back...

    I didnt know about the tylenol thing.....oops[This Message was Edited on 02/27/2009]
    [This Message was Edited on 02/27/2009]
  18. ask2266

    ask2266 Member

    Any symptom that you've had from CFS will get worse on Valcyte, so you will always think that your CFS is getting worse, but you're really getting better. I felt really bad in week 2-4, but I did not feel good for 6 weeks so far. Still, it's bearable now. My depression and anxiety went through the roof in week 2-4, but my doctor said HHV6 causes depression, and CFS causes aggiatated exhaustion, so it's not surprising that it got worse. All I would do all day was sit on the sofa, but I never could sleep, and I felt very aggitated and wired.

    I was in remission for 18 months and felt like a normal person after taking Famvir/Valtrex for EBV, and I felt terrible in week 2 of taking those also. I almost quit taking them, but I stuck with it, and in the 2nd month I was fully functional-- went back to work, even exercised. It was awesome and worth the misery.

    I'm hopeful that Valcyte will do this for me this time, now that I have resurgent HHV6. Stick to it. That's the best advice I got while I was suffering. Keep taking it through the misery and you will come out of the tunnel on the other side. I truly believe that!!
  19. ladybugmandy

    ladybugmandy Member

    hi smurf! (sorry i forgot your real name of courses lol)

    i am sorry to hear you aren't feeling well. it could be herx but i would page dr. lerner if it doesnt get better tomorrow. i read about valcyte and they say to tell your doctor if you have sore throat on the drug.

    i wonder if you could get a local doctor to do a throat culture.

    all the best

  20. Smurfette17

    Smurfette17 New Member

    Today I'm starting week 4-- it has still been hell. The sore throat was there for 3 days, went improved for 2 days then came back. Today I feel like I have the flu: sore throat, aches, headache. No fever, but feeling chilly. I feel like a truck ran me over, and have been staying in bed.

    I am so frustrated. I don't know if this is from the Valcyte or did I catch the flu? I left a message for Dr. L so I hope he can tell me something. I hope he doesn't make me go in-- the sore throat isn't super painful and I don't have a fever... And I am too weak for drive 1 hr each way.

    Very discouraged. I just feel like my symptoms keep getting worse, just when I think it can't possibly get worse. No wonder I'm depressed.

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