Update:I have Valcyte, but I'm too scared to take it. :(

Discussion in 'Fibromyalgia Main Forum' started by misskoji, Apr 2, 2009.

  1. misskoji

    misskoji Member

    Hey all.

    I have been meaning to post my experiences with Dr. Lerner here, I've just been too sick to actually complete it. Overall though, I have surrendered my micromanaging ways and have complete faith in him right now. He's a brilliant, awesome man and he is really growing on me.

    After my holter, echo, and chest CT, along with blood cultures and various other tests were completed, he gave me the go ahead to start Valcyte. I have HHV6 and CMV as my main culprits. I am to start it and go back in and see him for a follow up two weeks after my first dosing.

    The thing is, for some reason, I cannot bring myself to actually take the darn stuff. First, I delayed in picking it up from the pharmacy. Today I HAD to go there anyway, so I picked it up.

    I told the pharmacist there that I was very concerned about taking it after hearing about how sick it could make me and all of the other side effects I've read about. She hadn't dispensed it to anyone before, so all she could tell me was the side effects listed with the hand out. Then she looked it up on her computer there and I could see the look of concern on her face as she was reading. Ugh..she just wanted to be sure I was being monitored closely she said.

    It's here...I keep staring at it. I don't know why I am just not doing it. I am so scared of getting worse! I am and have been declining as it is, and have struggled to admit to myself I am as bad off as I am right now.

    If anyone can share some insight with me, or just give me a kick in the hind quarters, I would really appreciate it. Your experiences and knowledge would be of so much help to me right now.

    Thank you my friends,
    [This Message was Edited on 04/07/2009]
  2. ladybugmandy

    ladybugmandy Member

    "hind quarters" LMAO

    if it makes you feel better, i have been on the drug for almost 2 years with no ill effects. i know someone who takes 6 pills of valcyte a day and another person who has taken it for 8 years and is fine.

    dr. lerner is very careful with montoring blood work to keep you safe.

    i myself didn't think twice about taking it....i felt as if i was on the verge of death anyway. but if i could have taken it before i got this bad, you bet i would have!

    in a year or so, i think Marabavir might be available. it will work against CMV and MAYBE HHV6 and will be considerably less toxic...so you can maybe switch to that when it comes out.

    TAKE THE VALCYTE!!!!!!! (with a meal)

  3. misskoji

    misskoji Member

    I needed that! I think I'm just going to just do it, starting next week maybe.

    You haven't had any bad side effects? It didn't get worse for you at all once you started?

    Thanks again.

  4. ladybugmandy

    ladybugmandy Member

    next week? lol...take it now!!

    i got a little worse for a while....but it's worth it, believe me.
  5. jasminetee

    jasminetee Member

    I got worse after 7 months on it. I was told that you get worse before you get better. Then when I wasn't better I was told that some people feel better a year after going off it. That was in 2007, I continue to get worse. Valcyte did something bad to my lungs, I'm out of breath all the time still from taking it. That happened to a friend I met here too who hasn't been around. I also gained tons of weight on it that I haven't lost and I've gotten much weaker.

    I know it also helps some people get better or doesn't affect them adversely at least. You're feelings about taking it are very valid. It's a difficult decision. Sorry my news isn't better.

    [This Message was Edited on 04/03/2009]
  6. stschn

    stschn New Member

    Is different for everyone. I even know people who were able to work while on it and one person posted here that she took a trip to Russia and took the meds for 7 months instead of the 6 months that Dr. Montoya had suggested. She just lost track of the time.

    For me is was 6 months of HELL and I counted every day during that 6 month period. Would I do it again? YES, YES, YES. I've not gotten all the improvement that we would have liked in the energy but I've had this DD for over 21 years now and am 71 years old. In the back of my head I always felt that the younger people who had not been sick as long had a better shot. I can now balance my checkbook, move money in my IRA without my DH walking me through it, I can read and enjoy a book and read and not enjoy the morning paper. I don't have all that fog in my brain. Still can't spell worth a darn and have memory problems but now there is the age thing going on too. Doctors Montoya and Lerner have used this drug for years. Montoya for some 20 years in organ transplant patients. Take it with a lot of water and with food and I'm sure Dr. Lerner will watch out for you. All the best Joyce
  7. ladybugmandy

    ladybugmandy Member

    joyce....if you improved that much, why didn't you just continue the valcyte?!! i think you should take it until you have recovered completely!

    i didn't realize you had been sick so long....i wonder why some improve so quickly. i am still very sick and have been on the drug for almost 2 years......:(

    still better than when i started though....

  8. sascha

    sascha Member

    my main culprits also were hhv6 and cmv before starting valcyte. Dr. Montoya said i had the highest hhv6 he's seen (over 10,000). i was on valcyte 5+ months, then switched to valtrex, then switched to acyclovir, which i continue to take.

    the time of valcyte was rough for me- every person reacts differently- i couldn't wait to get off. i had to try it because of how non-functional and unwell i had become. at that time i was renting a room from a friend of my aunt's. this woman was 90. i was in mid-sixties and i couldn't do my own laundry or vacuum. the 90-yr-old could.

    valcyte brought my virus counts way down and like the others who get good results, my cognitive functioning improved A LOT. in fact, i would say at times it seems fully restored. other positive outcomes i got: i now benefit from rest whereas before it had no effect. i can be feeling in crashed mode from overdoing, rest maybe sleep for a hour or two, and feel much better. i feel better generally- i can remember going to see Dr. Montoya and i'd be lying slumped in my chair, or lying down on examining table while waiting for him whereas now i'm sitting up reading a book when he walks in the door. i CAN do my own laundry now, and a bit of vacuuming. i can do much more housework, and the odd thing is i really enjoy it! it's such a pleasure to be able to do it at all. i look back at what i did, see the difference, and think, wow! great!

    on the downside, the energy factor hasn't really been restored. i tire easily, but i try to pace myself so i don't run out of steam. i'm very sensitive to noise and lots of activity around me. i don't like bright lights. for some reason, maybe totally unrelated to CFS and the valcyte, i'm having terrible pain in my hips and groin, and i can't walk much.

    I AM helping look after grandchildren- one of my sons and his wife had twins- now two and a half months old. what a delight for me to be with them. i am being careful to adjust my schedule so that i don't burn out. we do a lot of quality napping on the couch. i do burn out at times, make readjustments, and carry on after a period of rest- wouldn't miss it for the world.

    seems like it's worth a try, taking the valcyte. you know outcomes run the gamut from non-responders to people who get a lot out of it. and while on it, some people have a tough time and some don't. Dr. Montoya told me that your reaction while on it doesn't predict its efficacy. and that age isn't a factor.

    i am going to keeping looking for ways to bring back energy and fitness. i can't do anything aerobic without paying the price, so i'm not going to try. i want to work on strengthing, and actually i think i'm doing that being with my grandchildren--carrying them around, getting up and down, holding them for long periods, going up and down stairs. i notice a difference.

    keep posting about your experiences if you go on it- i'll watch for your name- good luck! best, sascha

  9. 3gs

    3gs New Member

    i can relate to how you feel. iam still searching for a lyme doc however my gp gave me doxy but without his support am afraid to go this on my own.

    if i had a good doc like you i would definetly go for it.
  10. stschn

    stschn New Member

    Dr. Montoya gave me the option of staying on Valcyte. Believe me I'm no whimp so when I say it was 6 months of hell believe me it was. At age 71 I don't know how many more years I have and I sure don't want to spend them in hell. My life is better than it was and the acyclovir doesn't faze me at all. At some point I may go back on Valcyte but I doubt it. I want time with my family, I want to enjoy Holidays, Birthdays, just life in general and for me with a life on Valcyte none of that would be possible. I know that Doctor Montoya says age doesn't matter but it just makes sence that catching any illness early give you a better chance to recover and 21 years is a long time.
  11. ladybugmandy

    ladybugmandy Member

    i didnt realize you were 71 so i your decision makes total sense.

    i am having a very bad weak and am getting discouraged again. i am just so sick of not being able to use my mind. i dont know why my fog hasnt improved enough. it is better but its not nearly enough...and its been almost 2 years on valcyte.

    i'm really starting to worry but what can i do...
  12. stschn

    stschn New Member

    Did you read the study of 1,000 of us that was done by the pacific fatigue lab in stockton california? I was able to work with them because of a referal from Dr. Montoya. Thankfully it was all done by e-mail or phone. The first thing they did was put me on a basic polar heart rate monitor. We found that my resting heart rate was very high and any activity at all sent it sky high. So they designed a program for me the worst part was putting me in a power chair the best part was I don't spend days in bed anymore. Dr. Montoya always reminds us not to over do but I think most of us don't realize how little we have to do before we OVER DO. My heart rate after going up the stairs to our bedroom (I now have a stair chair) was the same as a well conditioned runner running full out for something like 30 minutes. Sorry I don't remember exactly but you get the idea. From what I remember from reading some of your post makes me feel that you are really over doing. 'Oh a good day paint the bathroom ' and back in bed again. I believe that some of my improvement has come from learning to live with the DD along with the Valcyte and Acyclovir. PFL only works with a few people sent by a few Doctors Peterson and Montoya being two. They just don't have the staff to open it up to every one. There is a lot of information out there on them however the most resent on the Phoenix web site newletter. All the best Joyce
  13. ladybugmandy

    ladybugmandy Member

    thanks joyce. i will look into the PFL info.

    i actually do very very little nowadays. i spend most days in bed or on the puter. the most i usually do is cook a meal. i am getting nice and fat :-/

    maybe once every 10 days or so, i have to overdo it because i will have errands to run or appointments downtown... but other than that, i am almost completely inactive.

    LISALOO New Member

    does anyone know anyone in the IL, MN or WI area that specializes or has a good knowledge of treating viruses in CFS besides Valcyte?
  15. stschn

    stschn New Member

    Reading about what you go through to see Dr. Learner would knock me on my butt. My husband drives me to Stanford 2 1/2 hours and we spend the night. Then he drives me home again another 2 1/2 hours. I go to my appointment in the travel chair (god bless my man) and I'm still going to take several days to feel what is for me a "half way good day".
  16. ladybugmandy

    ladybugmandy Member

    you're right...going to lerner is hard...i'm up at 5 am and back at midnight. but i only do it about once a month on average.

    thankfully, the last 2 days have been better for me. its so hard to remember what the good days are like when i am having bad days.

  17. misskoji

    misskoji Member

    Hi all.

    I do intend to respond to you all individually, please forgive me and be patient, I'm having such a hard time lately.

    I broke down and took my first Valcyte on Sunday evening. It was all downhill from there. I took it with a meal and tons of water.

    Well, out of nowhere I started HALLUCINATING....badly! I was seeing people, animals, my dog turned into several different species. Kinda funny, but really not.

    I'm lucky I had my cousin here to make sure that all went ok taking my first dose to help me.

    I called Dr. Lerner and told him what happened. He wanted me to come to his office the next day. Well, unfortunately I cannot make it there on that short of notice. So, I'm going to get there asap. In the meantime, he told me no more Valcyte for now.

    He said maybe it is interacting with something else I am taking. (Cymbalta, Lyrica, Vicoden, Lisinopril, Soma, Lorezepam, and generic zantac.) My thoughts were perhaps lack of sleep, stress, ect...but a google search brought up that a rare side effect of Valcyte can be hallucinationg.

    I cannot thank you enough for all your thoughts, support, and information. Thank you so much my friends!!!! I wish you all better days ahead. I promise to update and respond to you all very soon.

    Big hugs, and thanks my firiends.
  18. jasminetee

    jasminetee Member

    That's amazing that you were having hallucinations from one pill so far. I have that problem with pain and sleep meds but not Valcyte. We really do all respond differently. I wouldn't be surprised if it is interfering with some other med you are taking. I don't take other meds so I was only on Valcyte.

    So far, everyone else besides me seems to have gotten at least some improvement from Valcyte. I'm glad to hear that.

    Don't worry about responding individually to all of us unless you feel totally up to it. I hope to see you in Chat :)

  19. waltz

    waltz New Member


    I also had something like hallucinations but they were not full hallucinations, something halfway, plus paranoia (about aliens, spaceships, and spies, etc.). Unfortunately my doctor didn't respond to that and I kept taking Valcyte for the full 6 months, because at least in my experience, one doesn't know if one's perception of reality has been altered since one is in it, so it's dependent on other people to recognize it.

    I was wondering if you had any more information from Dr. Lerner about this side effect and what about the Valcyte causes it in some people and not others. I'm a bit concerned about whether there are long-term effects or damage since I kept taking Valcyte while this was going on the entire time.

  20. misskoji

    misskoji Member

    I'm sorry it has taken me so long to reply to everyone. I admit I've been peeking at the board and reading about how everyone is doing...but just didn't have the energy to type...until today!!!! I Looooooove these days where I feel normal, my old self. I even cooked breakfast today, I'm going to cherish it for sure.

    Now, onto responding to you all, and I thank you all for taking the time to read and/or comment.

    Thank you for sharing your experience and knowledge with me. I'm so sorry that Valcyte did not work out for you. May I ask what it did to your lungs?

    *Sue Ladybugmandy*
    Thanks for your *kick* lol...I did indeed start Valcyte, had to stop it, and have since started taking it regularly again. I will post an update soon. I hope all is well with you, I am crossing my fingers that you will finally get some improvement.

    *stschn Joyce*
    I'm very happy that you made some great improvements, but sad that you went through so much during your valcyte period. May I ask you, did your improvements come from the valcyte treatment or do you contribute it to something else?

    How AWESOME that you had some great improvements! I remember you saying that you had bad pain in your hips and groin. I also have pain in my hips, groin, and upper legs...the bone pain. Any other doctor I've been to says that there is no such thing as bone pain and attributed it to the muscles around the bone-Fibro related. Dr. Lerner was the first to tell me that of course bone pain is possible, and I believe attributed it to HHV6. Perhaps even after anti-viral treatment there is irreversible damage, and therefore you still have pain there? And please do rest up when you need it, I remember you saying that you still had energy factors. But your improvements are inspiring and I'm smiling for you.

    I have not yet dabbled too much into lyme, but it is another factor I realy want to investigate. I was in a country setting and running the fields with my dogs when I got sick. I have, however, read a lot about it and how hard of a struggle it is to find a lyme doc. Isn't it sad that these doctors have to hide that they do believe in chronic lyme and treat it? Have you checked into lymenet where you can post your location and the doctors respond to you privately? On a side note, I was on doxy for several months, close to a year I think, for acne treatment. I didn't have any ill effects, but we all know how everything affects us differently. Can I ask, what about the doxy treatment makes you hesitant? Is it the herx factor?

    There IS a specialist here in Minneapolis who does antiviral and several other treatments, but she has a waiting list. ( If I remember right I couldn't see her anyway because of insurance issues) Her name escapes me now, but I will look into it and get back to you.

    I'm sorry you're having difficulty too. I have read of a few cases of paranoia and hallucinations on other boards. When I googled valcyte hallucination, it did come up with results as it being a side effect. A rare one it seems, but there were cases.
    Dr. Lerner was very concerned about this when I first told him about this. When I did go to follow up with him, he told me in all his time practicing with valcyte, this has never happened to anyone else. He seemed to think that it was a interaction of valcyte and the other meds I was on. He told me to stop taking Lyrica and Soma.

    Quitting Lyrica was more than fine by me!!! It did nothing to me but give me more side effects that required taking even more drugs. Soma, however, has been one of my mercy drugs, it really helps me. So, I was very upset that he didn't want me taking this anymore. But, to get better, I'll do just about anything. So, I did quit taking both of these. I had no more hallucinations persay, but a lot of anxiety. Anxiety is also a noted effect of valcyte. About three days ago, my pain was soooo bad, I broke down and took a soma. I have someone here to help care for me now, so I made them aware of what could happen. Well, nothing bad happened, only some good sleep came out of it.

    I have thought about this for a while, and of course I'm no doctor and may be totally off in left field here...But since these viruses/infections can cross the blood/brain barrier, maybe it's possible that the valcyte is killng off the nasties up there and this is how our brain reacts to it?

    Anyway, thanks again all and I continue to read about how everyone is coming along.