5 months post-valcyte update

Discussion in 'Fibromyalgia Main Forum' started by clo1, May 11, 2008.

  1. clo1

    clo1 New Member

    as some of you already know, i am participating in the stanford clinical trial and had an extremely rough time on valcyte - it felt very toxic for my system and at times i thought i couldn't take another day of it...i actually felt like i was close to death because every ounce of life force was drained from me...when i started the trial i was in a very severe relapse that had been going on since october 2006, so my functional and cognitive capacities were very low; functional: about 8-15%; cognitive about 30-40%...i have had cfs for 22 years and am 53 years old...i have been off the valcyte now since january 8...

    i have been off the board for awhile, feeling that i had not much to offer in terms of valcyte success...however, for the past week or so i have started to notice some significant improvements; my brain feels clear and i woke up twice this week feeling somewhat refreshed...i am still exceedingly weak and try to take a 5 minute walk everyday; i will gradually build upon that...my lungs became so atrophied due to immobility that i have been very short of breath; now i am doing deep breathing everyday with an incentive spirometer to measure improvement...my cfs headaches are pretty much gone and i don't feel that chronic fluish feeling anymore...so there is fragile progress and i am not overly exuberant because as we all know, everything could change...

    but at this point i am cautiously optimistic and the good news is that one can start to recover long after the valcyte has been stopped, as dr. montoya has suggested... i thank all of you for your support and friendship throughout this whole ordeal...best regards, clo
    [This Message was Edited on 05/11/2008]
  2. erica741

    erica741 New Member

    Yay, I am so happy that you are finally starting to feel better! I know you had such a rough time on Valcyte, and were really discouraged when you didn't improve by the end of treatment and in the following months.

    Have you found out your post-Valctye viral titers yet? When does the trial allow you to start Valtrex or other medications? Since you now know that you responded to Valctye, maybe you would get better even more quickly on Valtrex or going back on Valctye? (I know the latter sounds daunting, but many need to take Valctye for longer than 6 months to get the most out of it).

    When I saw Dr. Montoya a few weeks ago, he suggested I go back on Valcyte since my EBV has shot up and I am still not close to fully recovered. I'm not sure what you can or want to do now, but wanted to share with you what Dr. Montoya recommended for me since I too feel only mildly better a few months after finishing Valctye.

    Again, I'm so thrilled that you are starting to feel recovery! Please do continue to keep us posted.

  3. ladybugmandy

    ladybugmandy Member

    this is very hard. we are the ones paving the way so doctors can determine whether antivirals will help, how much to take, and how long to take them.

    it is such a difficult position to be in, not knowing if the worsening is a good thing or a very bad thing.

    i am so happy that there is at least some people who have noticed some improvement and i certainly share the pain of those who are still suffering.

    as most of you know, i am doing the antiviral thing full-on with valcyte AND valtrex and plan to continue for as long as i can...which will likely be years since i have been sick so long (that is, if my liver holds out)

    i read about a woman who had been ill for a long, long time but recovered after 6 years on famvir.

    each day is a living hell for me....and every story of improvement is so important to post...

    thank you!

  4. deserella

    deserella Member

    Thanks for sharing. That sure does give me hope! I'm so very happy to hear that you are seeing improvement. During the month of April I could feel that my body wanted to do more and was healing. I started feeling great and having some really good days, but I made sure not to over do it. I know what you mean about the shortness of breath Clo1. I had the energy to walk around the house but not the lung capacity.

    This past week I have felt flu like with swollen gland, sore throat, body aches, fatigue, and itching/rash. This is how I felt the first few weeks when I first started valcyte. So it seems there is more viruses to be killed off. But the fact that I felt so good in April gives me hope. We will see what happens in the next few weeks.

    I'm glad to hear that you can still improve after stopping valcyte! Take care and hang in there everyone.

  5. sascha

    sascha Member

    signs of improvement after all you have been through.

    it is very hopeful to hear this from you, and may the trend continue ever upward.

    i'm in the phase of almost always feeling at the end of my rope (5+ months on valcyte)- very few and very brief periods of respite. feel like a complete stranger to myself, get so hopeless feeling and so down and out, can't walk/talk/do anything. very hard to hang on through it- so for you and for the rest of us it is SO GOOD to hear something happening for the good.

    you sure deserve long upward trend- best wishes, sascha
  6. clo1

    clo1 New Member

    dear jam, thaks so much for your supportive and kind post - of course i so empathize with your discouragement; i cannot remember the length of time that you have been taking valcyte...are you still on it? best, clo
  7. clo1

    clo1 New Member

    dear erica, good to hear from you and i think we will learn more about our titers and other results of the trial sometime in july or august...but nothing has been confirmed yet...so it's been asked that we not start valcyte again or any other antivirals until we have met with one of the trial doctors at that time...i'm just curious to know why dr. montoya doesn't just give you more time off the valcyte to see if you improve as the months go by...as i have finally started to do...best regards, clo
  8. clo1

    clo1 New Member

    dear sue, i am so sorry to hear that you have not improved at all...it's interesting to note the differences between drs. montoya and lerner at this point; valcyte is such a strong drug with so many potentially toxic side effects that dr. montoya doesn't always seem to think that more is better...he seems sees the post-valcyte recovery time as equally important...but as i have also seen on this board, he has many patients on valcyte for longer than 6 months...valtrex is apparently much less toxic of a drug...and i sure hope it helps you...how long does lerner plan to keep you on the valcyte?? love, clo
  9. clo1

    clo1 New Member

    dear kelly, thanks as always for your input and support...it is always so helpful...i sometimes feel as though i am hanging onto this new found improvement with a thread; i still have such a long way to go; but i always have to remember to appreciate whatever days are somewhat better instead of dreading the horrible ones that may (or may not!) come back...not always easy...

    what is causing your low co2?

    best regards, clo

  10. clo1

    clo1 New Member

    dear desi, glad i was able to give you some hope, as your posts have always given me some much needed hope...

    i pray that your current flu symptoms lift soon and that you regain your post-valcyte health; the fact that you've gotten it back once is a good sign i think...

    all the best, clo
  11. clo1

    clo1 New Member

    dear sascha, i sure relate to what you are going through...if i had not been in the stanford trial i know i would have stopped the valcyte way before the six months had ended, because it had become unendurable...but i didn't want to lose my well-earned place in the trial!! but by the end of 6 months it felt as though my insides had been "nuked" and that i was "running on fumes"; it was so miserable...different from the cfs misery, but kind of like "changing seats on the titanic"...that misery has obviously continued well into post-valcyte time but it's now been 5 months and i am starting to heal, a bit...so when it feels the most hopeless, just remember that many of us have been there; taken to the brink; and that there is hope...i had a friend who went through chemo for breast cancer while i was on valcyte, and she was able to go europe one month after stopping chemo!!...so that's what we're up against with these viruses and valcyte...best regards, clo
  12. jasminetee

    jasminetee Member

    That's great news that you're starting to show improvement. I hope it keeps up for you.

  13. Timaca

    Timaca New Member

    Yay!!! I'm so glad that you have lost that flu like feeling !!! That is significant!!!!

    I finished 9 months of valcyte a week ago. I am improved but no where near well.

    As it turns out, I have high antibody titers to Cpn, so I will be going on doxy soon to treat that.

    Do you know if you had any other co-infections (like Cpn, lyme, etc?)

  14. ladybugmandy

    ladybugmandy Member

    hi clo!

    lerner didn't say how long i would be on valcyte but i think he keeps people on the drugs for as long as it takes to see recovery. i know he has kept at least one patient on valcyte for 3.5 years.

    i know its very toxic and can potentially kill me, but i really could care less. my life is gone anyway...i will take it as long as i can.

  15. clo1

    clo1 New Member

    dear timaca, good to hear from you and i would say the same for me; i have improved somewhat but i still have a long way to go...i don't yet know about other organisms, except what i learned from the pre-trial screening, which is that i have relatively high antibodies to the parvo b19 virus...and as i recall that did get dr. montoya's attention but did not rule me out as a candidate for the trial...at this point i have no idea about bacterial infections except that i don't have lyme disease...in any case, i have had such horrendous experiences with antibiotics during this last 22 years that i would only take them for a life-threatening emergency...they always seem to weaken my immunity and lay the groundwork for a cfs relapse...at this point i am just going to wait and see what happens as the weeks/months go by after the valcyte...you might also find that you improve with time off of the drug...what do you think? hugs to you as well, clo
  16. clo1

    clo1 New Member

    dear sue, there have been so many times during the last 22 years at the depths of cfs, as well as during and post valcyte, that i have really questioned whether i wanted keep living with such poor quality of life...i've even had FRIENDS say "i don't know how you can stand it...i wouldn't have been able to", etc...almost giving me permission to end it all...which of course i was not asking for...

    but today i am sure glad to still be here, and i know that the people (and dog!) who love me are glad as well...

    i ask you to not give up hope, as many have asked of me...at times i've wanted to "slap" them...knowing that they just did not get it!! but believe me, i get it!! love, clo
    [This Message was Edited on 05/12/2008]
  17. clo1

    clo1 New Member

    dear tee, thanks for your support; any glimmer of much needed hope is so welcome...i am nowhere near "out of the woods yet" but i'll take what i can get...how are you feeling these days? best regards, clo
  18. deserella

    deserella Member

    I ran into this poem the other day. My Aunt who died of kidney failure wrote it. She suffered with health problems all of her life, yet she had an amazing attitude about it all. She is my hero. I felt I could really relate to this peom with the discouragment and hopelessness I've felt on valcyte. I know all of you on valcyte know exactly what I'm talking about!

    A Journey of Faith

    Once asleep now alive,
    Once despondent, now I arrive.

    Blinded darkness a clear bright sky,
    Opens life, again I reply

    Deep despair, hope appears
    Where faith regains its hand over fear.

    Desperation, fear and hate,
    I cry to God “What is my fate?”

    My child, my child, The Savior replies,
    “This too I suffered when I bled and died.”

    “Time is short, so carry on,
    Your faith strengthened, now you’re strong”

    “This life seems long and hard to bare,”
    “It’s not my daughter, I’m always there,”

    “When your mission on earth is done,
    Angels will song praises that you have come.”

    “You’ll sit before my throne above,
    Be crowned with glory and praise and love.”
  19. clo1

    clo1 New Member

    dear deserella, that is beautiful...thanks so much for sharing it with us...your aunt was quite a trooper and a wonderful poet...clo
  20. erica741

    erica741 New Member

    July/August is a pretty long time for you to wait for your results. Though I suppose Dr. Montoya needs to follow the progress of the trial participants for several months after you have finished Valcyte in order to conclude whether the drug did cure most of the participants who got the drug.

    Dr. Montoya suggested I go back on Valcyte because I am still running fevers and my EBV titers are higher than ever, which indicate I still have an active EBV infection that needs more time on Valctye. I think if I was still fatigued, but not running fevers and/or my titers had stayed low, he may have just advised a few more months of rest.

    I do hope that in your case, time does continue to heal you!

    [This Message was Edited on 05/13/2008]