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Valcyte dangers

Discussion in 'General ME/CFS Discussion' started by saint, May 9, 2014.

  1. cfsandme

    cfsandme

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    Hi there! I don't know where to turn. I have been on the Pridgen protocol for over a month and don't feel any difference for better or worse. I know there are others on this as well but I have only seen a rare comment about someone writing much about it. If they say it worked and someone asks a follow up question I never see a response. Is there somewhere we (who are on the protocol) can get together online and swap notes. Since our doctors are only giving us what Dr. Pridgen has told them to give they really can't answer questions such as at what point did you start feeling better etc... I wish I knew more of what to expect. I know if this worked for me I would be all over the place trying to help my fellow sufferer so I'm a little concerned . ***** Saint, I just saw your note about Valcyte. I'm actually really confused because although I know there is at least one back up and from what my doctor said it sounds like two back ups the protocol that I'm on that is suppose to be the one that is getting the best results does not call for Valcyte. In fact, I have even been in touch with someone very close to Dr. Pridgen who knows the protocol well and she never mentioned valcyte. I was told and am on Celebrex and Famvir.
     
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    When i first used famvir i didn't notice any great improvement for 6 months. What kept me going on it was that i didn't crash every few weeks like i was prior.

    I would consider giving it more time as in a few months before coming to any conclusions. Hope this helps some.
     
  3. Kati

    Kati Patient in training

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    It would be safe to say that we are all looking for quick fixes, and sadly, it sounds like very rarely if at all it happens that way.
     
    NK17 and heapsreal like this.
  4. Dreamer

    Dreamer

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    I'm sorry this pridgen protocol isn't doing anything for you ( so far). Of course this is also upsetting news to me since i will be on it soon. After being sick so long and so many failed attempts to help in this illness I am pretty cynical about any dr announcing amazing results. Good luck to you and I will post any results I get from this.
     
    cfsandme likes this.
  5. cfsandme

    cfsandme

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    Dreamer, Please do keep us posted. We really need each other to bounce results off with.
    My doctor said the duration of time to take this combination was for 4 months however, someone closer to Dr. Pridgen said that it could take 4-6 months before you are feeling better.

    It appears that Saint is doing the protocol as well but she has me confused because she said she is taking Valcyte which is not part of the main protocol. I'm not sure if she saw my question in my post above or not. Does anyone know why she mentioned Valcyte? It seems as though she went to Dr. Pridgen to get this so I'm confused unless she tried the main protocol first and it didn't work so she is doing one of the two back up protocols. If possible please let us know Saint and please let us know how your feeling and how long you have been on it. There are not too many of us talking about it so it would be nice to know.

    Thanks for the hope heapsreal. I'm guessing you only took Famvir alone without the Celebrex. How much did you take and for how long? Are you better?

    If anyone has any questions for me I'm an open book.

    Take care,
    Hope
     
  6. Dreamer

    Dreamer

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    I will be contacting my dr (dr podell) tomorrow to confirm the non disclosure is done and we can move forward with the treatment. I want to be on the drugs by 7/3. Will keep you posted. Had no idea it could be 4-6 months.
     
  7. IreneF

    IreneF Senior Member

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    I'm on my second try with Valcyte--first was for nine months, with no improvement. This time my doc added colchicine, and I've been doing a little better over the past six weeks. I've gone from lying on the couch to sitting on it. My crashes don't last as long. I would like to think that it's the drugs that are doing it, and not just random changes or the result of my devotion to staying on the couch.
     
    NK17 likes this.
  8. SOC

    SOC

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    Let's hope the meds are helping. :) I think if devotion to staying on the couch was helping that much in 6 weeks, a lot of us would be a lot better than we are. ;)
     
  9. IreneF

    IreneF Senior Member

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    I'm trying to stay on the couch even when I feel like getting up. Like bed rest but somehow more comfortable. I get my son to pick up the newspapers, etc. but since I live in a three-story house going up and down the stairs is inevitable. I've been doing it for over six months. Bored out of my mind.

    Plus the changes aren't anything dramatic, and not all the time. Sitting up more. Sleeping less. A crash that felt like it could last over a week cleared in about 4 1/2 days. My mind feels clearer. My sinuses are less irritated.

    I used to knit and crochet, but I had to give it up because it exacerbated my carpal tunnel syndrome and made my fingers ache. I'm going to try plaquenil as an anti-inflammatory.
     
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  10. cfsandme

    cfsandme

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    I haven't heard back from Saint but I read one of her first paragraphs in this topic and noted that she is taking the generic of diflucan (I believe it is flucanozale) and I was told by my doctor and my pharmacist not to take my diflucan with the Celebrex.

    Furthermore, she also said that Dr. Pridgen's protocol had her laying flat on her back so it must be doing something. My doctor pointed out that she read if my symptoms worsened after starting the protocol that I should stop the protocol and wait 7 days and restart. I had to do so anyway because my insurance company gave me issues getting Celebrex so I had to stop after taking samples and restart when I could get my script filled.

    One recommendation I would make to anyone doing this protocol is keeping a daily journal. It doesn't need to be long just jot down your daily symptoms or if there is anything different each day.

    I do have to say that I am feeling intense knee pain but I'm not sure if that is due to the protocol or due to stopping an MAOI I was taking. I'm hoping to see my doctor in July.
     
  11. cfsandme

    cfsandme

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    I know that there are only a handful of people that I can find that are doing the protocol so I was hoping to keep all of us together so I'm creating a facebook page for this topic specifically so that we can bounce things off one another and ask each other questions. If you would like to be added or know the name of this page please feel free to e-mail me at hopeful42014@yahoo dot com I hope this is ok. If not please feel free to delete my post but please let me know if it is ok to list the facebook page.

    I'm hoping as a group we can come back and report amazing things to the community! If I get better you will surely know about it!

    Hugs!
     
    Last edited by a moderator: Jul 6, 2014
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    @cfsandme

    Yes, it is OK to give a link to the facebook page. I took the @ out of your post as it could be picked up by robots. You could also, if you like, start a private group here on Phoenix Rising. You can choose the privacy settings. Just look under groups in the top menu.

    Sushi
     
  13. Applewalks

    Applewalks

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    Had uveitis in both eyes and very low vision. Dr. DE prescribed Valcyte for very high titters of HHV6. As viral count dropped, vision returned.
    Months after stopping Valcyte, uveitis returned. Restarted Valcyte.
    Now...kidney stones, and a tumor in both kidneys.
    Will be 'watched'.
    Next week I'm being seen by retina specialist. Meanwhile, still on Valcyte.
    I've been sick with EBV and HHV6 for years. Very limited activity and mostly home bound.
    Now I'm afraid. Renal failure is a horrible way to die.
     
  14. zzz

    zzz Senior Member

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    Quite a few people have died from kidney failure triggered by ganciclovir, the active metabolite of Valcyte. From my personal conversations with Nancy Klimas a number of years ago, it seems that once the kidneys fail, you have passed the point of no return. What you describe as "watching" sounds extraordinarily risky to me. Although I am generally a strong advocate for the use of Valcyte in ME/CFS, the use of this drug in your situation does not sound safe to me. If you can return your kidneys to normal health, then restarting Valcyte at a much lower dose might be feasible, though there are almost no doctors who know how to do this. But if it were I, I would permanently stay away from full dose Valcyte in your situation. The mortality risks are just too high. Again, this is based on information given to me by Dr. Klimas.

    I should mention that when I talked to Dr. Klimas, this was when she was running an AIDS clinic in addition to her CFS clinic. Ganciclovir was commonly used to treat CMV retinitis in AIDS patients; at least at that time, it was the only drug known to be effective against this potentially blinding condition, which basically occurred exclusively in immunocompromised patients. Ganciclovir had been used on only a very small number of CFS patients, and there was not enough data to determine its safety at that point. But Dr. Klimas told me that no matter how careful she was, a certain number of her AIDS patients who were being treated with ganciclovir lost their kidneys, and for that reason she recommended against using ganciclovir (and later Valcyte) for treatment of CFS until its safety for this purpose could be determined.
     
    Last edited: Feb 10, 2016
  15. Applewalks

    Applewalks

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    Thank you ZZZ. This info is extremely helpful. I deeply respect the opinions of Dr. Klimas. Can't begin to tell you how much I appreciate this info.
     
  16. minkeygirl

    minkeygirl But I Look So Good.

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    @Applewalks sounds scary for sure but no one here has your medical records and although people here are knowlegable, their advice should not take the place of your treating physicians. I had no problems after almost a year on Valcyte and many other's here have had success with it.

    Discuss this with your doctors. Express your concerns to them.
     
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  17. Applewalks

    Applewalks

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    Dear Minkeygirl,
    You are of course, correct about expressing concerns to my doctors. I've been on Valcyte for many years. After just one year, I would have reported the same experience as you do.
    Think it's just been too long, and now past toxic stage. Sadly find that doctors don't have as much experience with this as I would have hoped, so do very much appreciate all feedback from all sources.
    I shall have more doctor feedback over the next couple of weeks, but I KNOW already, that I'm in a new fresh batch of symptoms and problems.
    Never been part of 'blog' such as this. Very grateful for all the group information I can get. I live alone and although have many friends, they know nothing about how these illnesses or treatments work. So grateful for all your thoughts.
     
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  18. maryb

    maryb iherb code TAK122

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    @Applewalks
    hope your doctor can help reverse what is going on at present for you. When you start feeling better maybe try a different route to treat viruses...there are a few threads on here, of course its very different to drugs and not for everyone, but it may be worth a try for you. Its something to think about for the future. Good luck with the next few weeks and hope your medical team can help you improve.
     
  19. Applewalks

    Applewalks

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    Hi maryb,
    Thank you for the good thoughts and encouragement. I'm so disabled at this point, and the weather so insane, I can't get to another doctor until next week. Hoping the weather will clear.
    I have stopped all suspect medications but no idea what to do next. I will find out asap.
    As you so well know, none of this is simple and for me, just more complex and harder.
    I don't give up!
     
    Last edited by a moderator: Feb 15, 2016

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