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I have some questions for anyone who has ever taken Valcyte...

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Gingergrrl, Jan 12, 2015.

  1. Gingergrrl

    Gingergrrl Senior Member

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    I am now considering trying Valcyte although I have not yet had the follow-up phone consult with my ME/CFS doctor. So, I do not know for sure what he will propose as my next step but I know that this is one of the things that we discussed and I want to plan ahead.

    As usual, I have a lot of questions and am tagging some people who I know have posted about Valcyte in the past. But I want feedback from everyone who has ever taken one Valcyte pill and only tagging those I can think of off the top of my head... and of course if anyone is not comfortable responding, please ignore being tagged! @jeff_w @Butydoc @NK17 @zzz @Ema @RUkiddingME @SOC @heapsreal

    Here are my questions:

    1) What dose of Valycte did you take (at beginning, middle and end) b/c I have heard many different dosing schedules. Does anyone know what is considered the standard dose?

    2) How long did you take Valcyte for? (weeks, months, years, etc)

    3) What side effects did you have? I want to hear no matter how bad it was :wide-eyed: :sluggish:.

    4) What benefits or symptom improvements did you notice that you specifically attribute to Valcyte?

    5) What viruses were you treating or were you taking it for the anti-microglial effects or some other reason?

    6) How frequent were your blood tests and did you ever have a bad result on blood test which led to you stopping Valcyte?

    7) Do you recommend Valcyte and glad you did it or do you regret it overall?

    8) Did you take the brand or generic? If you took the brand, did you get a U.S. insurance company to pay for it or apply for financial assistance from Genentech (or whatever it is called?)

    9) Please tell me any other info that you think I need...

    Thank you so much to all in advance for any responses :star::hug:
     
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  2. Gingergrrl

    Gingergrrl Senior Member

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    To the person who just answered all my questions above by PM, thank you so much for the info and quick response and I will respond to the PM later! And if anyone I tagged (or didn't tag) feels more comfortable answering by PM I totally understand! I am so grateful for any info I receive.
     
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  3. jeff_w

    jeff_w Senior Member

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    In the beginning: 450mg twice daily. Dr. Kaufman wanted me on 900mg twice daily, which I worked up to after a few days on 450mg.

    After 3 weeks on the loading dose of 900mg twice daily (4 pills), Dr. K. had me switch back to 450mg twice daily. This is a fairly standard dose: 900mg per day. 1350mg per day is also fairly standard, and Dr. K. will be switching me to that soon.
    I've been on it for 4 months exactly. Still on it.
    1. Intense nausea, for which Dr. K. prescribed Zofran, and that worked very well.
    2. Intense headaches. Two Extra Strength Tylenol took care of the headaches.
    Less fatigue. Better cognition. Restored sense of humor.
    EBV only. Also wanted its anti-microglial and anti-inflammatory effects.
    Once a week for the first 6 weeks. After that, once per month.
    Recommend it whole-heartedly.
    Brand, which insurance paid for.
    Start out slowly since you are sensitive to meds.
     
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  4. zzz

    zzz Senior Member

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    I should mention that Valcyte is a prodrug for ganciclovir, which means that the body converts Valcyte into ganciclovir after Valcyte is absorbed from the GI tract. It is ganciclovir that does all the work. Before Valcyte was released, people (such as me) could get ganciclovir only through IV treatments, since there is almost no absorption of it from the gut. My initial treatment was seven weeks of IV ganciclovir. I started my ganciclovir treatment in April, 2001.
    Ganciclovir doses are exactly equivalent to Valcyte doses. In the beginning, I took 900 mg per day of ganciclovir in one IV treatment. Since this was done at a clinic, these treatments were five days a week, with the weekends off. As I later discovered from my own experience (and later from Dr. Montoya's reports) that Valcyte is a powerful immune modulator, the weekends off probably helped it work better in this area, and probably played a role in my dramatic improvement over the seven weeks.

    A few weeks into the treatment, my doctor tried going to 1800 mg per day in two separated IV treatments. However, after a few days, my blood tests showed a number of lower blood counts. I stopped the treatment for a couple of days and the blood counts rebounded, and then I resumed the treatment at 900 mg per day.

    After the seven weeks, I continued improving for about a month. Things leveled off then. Valcyte was released at the end of August, and I began taking it the week it was released. I took 450 mg twice a day. Occasionally, if I had a flare-up that I thought the Valcyte should be handling, I would take a two week break and then resume. This proved to be very effective, and I was able to use this even to get rid of other unrelated infections, which perplexed Dr. Anthony Komaroff when my doctor told him about this. Occasionally, I would go up to 1350 mg per day, as this seemed to help at times, especially if I were coming off a break. I was even able to tolerate 1800 mg per day, but didn't due this for long, as I found it gave me no additional benefits.

    As for a standard dose, there is none, although dosing seems always to be between 900 and 1800 mg per day. Other than that, it varies by doctor. I determined my own dosing the last four years I was on Valcyte, as my doctors had no experience with this drug.
    In addition to the seven weeks of ganciclovir, I took Valcyte for five years. I stopped taking it when I was able to go off it without having my original symptoms return. (See below.) In more recent years, I have tried Valcyte, but it does not do anything for my remaining symptoms.
    I had very mild side effects from the ganciclovir, and none from Valcyte. I had mild GI distress from the ganciclovir the first week, which then disappeared. For a while, once the ganciclovir started to kick in, it made my sleeping problems slightly worse by giving me too much energy. Increasing my sleeping meds slightly fixed this. After a few weeks, this problem disappeared (although I still had greater energy during the day), and I was able to go back to my original dosage of sleep meds.
    The first two and a half years of my illness after my last relapse in September, 1998, I had constant headaches and a low grade fever. I had to take the maximum dose of Tylenol every single day. I suspect that I had some form of encephalitis.

    Two weeks into my ganciclovir treatment, everything changed. Among other things, the headaches and low grade fever disappeared completely. When I went on the Valcyte, they stayed away. However, if I went off the Valcyte for more than about a week, they would come back. Finally, in the fall of 2006, I was able to go off the Valcyte without the headache and fever returning. No other symptoms returned or got worse, so I stopped the Valcyte then. The constant headache and fever have never returned.

    One of the things that happened two weeks into the ganciclovir treatments is that I started getting a lot of energy. The nurse at the clinic later told me that when I first walked in the door, she took one look at me and didn't know whether to check me in or call an ambulance. Within a few weeks, I felt like my energy was almost normal. After my return from these treatments, I talked to Nancy Klimas. At that time, there were only two doctors in the country using ganciclovir to treat ME/CFS, and specialists such as Nancy Klimas were urging people to wait for the clinical trials (which were years away) before trying ganciclovir or (later) Valcyte. But she was quite familiar with ganciclovir because it was used frequently in her AIDS clinic to treat CMV retinitis, which occurs essentially exclusively in AIDS patients. She told me that a number of them had told her that ganciclovir had increased their energy levels as well. In my experience, this appears to be a direct neurological effect, unrelated to any antiviral or immunological effect. The increase in energy is most rapid at the beginning of the treatment, though I found that it continued at a slower pace during the first four years of my Valcyte treatment.

    The ganciclovir and Valcyte improved my autonomic symptoms as well. Specifically, as my energy improved, my shortness of breath rapidly disappeared, along with my tachycardia. I had no other cardiac symptoms during that phase of my illness.

    My cognitive dysfunction and memory also improved.

    To give an idea of the size of my improvement, five months after my ganciclovir treatments ended, I flew out to see my sister in St. Louis, a thousand miles from Boston, where I was living. This was the first time I was able to fly anywhere in the three years since my relapse, and for many years after that, I was able to fly several times a year on my own to various places. While in St. Louis, I built a new computer for my sister, starting completely from parts, in an hour and a half. That is still my record for computer building.
    Before my first treatment, I was tested for active herpes viruses 1 through 7, and came back negative on all of them. However, Dr. John Martin had a test for "stealth virus" which I took; it came back positive. Dr. Martin said that all patients with CFS scored positive for this virus, while almost no people without CFS did. Dr. Kopelson, who ran the clinic I went to, accepted anyone who tested positive for this virus. Years later, it became clear that Dr. Martin was actually testing for the ciguatoxin epitope, which he presumed was a product of this stealth virus. The ciguatoxin epitope has independently been confirmed to be present in people with true ME/CFS. However, the test for it is no longer available anywhere. There are many threads on PR about this toxin and associated research.
    I originally had blood tests daily at the clinic, then weekly, and finally monthly when I was on the Valcyte. I had that one incident I mentioned where my blood counts dropped for a couple of days when on the IV ganciclovir, but that was it.
    I think that Valcyte was the best treatment that I ever did. It wasn't curative, and it didn't get me back to work as it has done for a number of people, but ME/CFS is a complex illness. I certainly have no complaints. I have found Dr. Montoya's results very encouraging, and was not surprised to hear that a number of his patients who responded to Valcyte may not have had active herpes infections after all. For this reason, I would recommend at least a trial of Valcyte for anyone with moderate or severe ME/CFS, assuming that it's affordable. It really was life changing for me.
    I always took the brand, as the generic was not available at the time. Back when I took Valcyte, insurance coverage was much better than it is now; I believe I initially paid $15 for a three month supply of Valcyte. :rolleyes:
    You're welcome! :)
     
    Last edited: Jan 13, 2015
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  5. Gingergrrl

    Gingergrrl Senior Member

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    Thank you so much @jeff_w and @zzz for your detailed replies and I am going to respond later when I am more alert and coherent. I did some blood tests this morning for my endocrinologist and still recuperating! Thank you also to another person who sent me a PM. You guys ROCK :thumbsup: :star::star:
     
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  6. jimells

    jimells Senior Member

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    I took Valtrex for two months with no noticeable improvements then switched to Valcyte for six months. The dose was 1800 mg per day for 3 weeks then 900 mg per day. It appears to be the branded version.

    I suspect Valcyte made my gut problems worse. I did blood tests monthly. Some of the numbers changed a little, but I'm too lazy to look for the tests. I don't know if the doctor actually reviewed the results or not, since I never talked to her after the initial appointment. I consider the doctor's followup to have been inadequate, and I think that's a bad idea for a drug like this.

    While on the drug I experienced a partial remission which then ended. Based on that experience I quit the drug after the initial six month prescription was over. Perhaps the drug help to initiate the partial remission. I can't tell since my illness has a history of remission and relapse. It's been a year since the last remission and I'm more than ready for another one, even though they last only a month or three.

    It was prescribed to treat HHV-6. But my neuro later looked at the exact same test results and concluded that I did *not* have an active HHV-6 infection. So who knows.

    I don't regret taking it. Just going to the grocery store and back (it's only 20 miles round-trip) usually triggers PEM, so I almost never leave the house. For me, the potential benefit outweighed the risks. I know if I do nothing I won't get better.

    I have a Medicare drug plan. Most of the out-of-pocket expenses are covered by Medicaid. The insurance company did not require any special approvals.
     
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  7. jstefl

    jstefl Senior Member

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    I took Valcyte back in 2008.

    I started at 900 mg per day for a week, went to 1800 mg per day for a week, and then back to 900 mg per day for another 7 months and two weeks.

    I experienced very minor side effects from the Valcyte. I may have had a more severe headache at first, but the headaches were so bad at the time that it was difficult to tell for certain. After the first two weeks, I just kept feeling better.

    Valcyte resulted in many improvements for me. I was having a continuous severe headache for many years before Valcyte. After Valcyte, the headaches were still present, but much milder. Tylenol is able to remove most of the pain. When I started Valcyte, I was taking Midodrine to boost my blood pressure, which had dropped to 80/50. While on Valcyte, I was able to wean myself off of the Midodrine, and seven years later, my blood pressure seems to be holding its own. I noticed changes in my stool, which was almost black when I started Valcyte, and a normal brown after. I even noticed improvements in my periodontal disease.

    I had problems with HHV-6,CMV, and EBV. I never got retested after Valcyte, so I can't tell you what my titers were, but after all these years, the improvements seem to be holding for me.

    I got a blood test every month. There were no problems during the time I was on Valcyte.

    I took the brand name product, as the generic wasn't available when I took it.

    I would definitely recommend trying Valcyte. I am extremely glad that I took it. I just can't imagine how I lived with the headaches as long as I did, but I am sure glad they are gone. I took my pulse and BP daily while I was on Valcyte. When I started, my pulse and BP were extremely variable from day to day. Some days high, and some days very low. After completing the 8 months on Valcyte, my pulse and BP are pretty much the same every day.
    The improvements have lasted since I stopped.

    If I had it to do over again, I probably would have taken the Valcyte for a longer period of time. At least a year, or longer if my doctor would have let me. My one disappointment is the Valcyte did not increase my energy level. Taking it for a longer time may have helped with that, but I really don't know.

    John
     
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  8. Gingergrrl

    Gingergrrl Senior Member

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    @jimells and @jstefl Thank you both so much for your detailed responses and my internet access was messed up this morning so I am even further behind on responding to posts. I have lots of questions and will definitely be responding to this thread soon. Thank you so much to everyone!
     
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  9. SOC

    SOC

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    In the first round we worked up to 1350mg over a couple of weeks and stayed at that dose. Daughter went down to 900mg toward the end of that round.

    This round we've been at 900 mg the whole time.

    It's my understanding that the standard dose is either 1350mg or 900 mg. If I was starting from scratch, I'd want to try the 1350mg dose. I'm finding the 900mg dose is fine for the second round, but we caught the reactivation much sooner this time so I don't think the higher dose is as important.

    In the first round, my daughter took Valcyte for 20 months. I took it for about 24 months. We are now 12 months into the second round of Valcyte, after 2 years off.

    Daughter had no problems at all. Although she did have to decrease dosage at one point when her liver enzymes started to climb (see below).

    I had a bad patch about 4 months into Valcyte treatment the first time around. It was like a really bad flare/relapse -- all the usual symptoms plus skin infections, respiratory infections, and shingles. It was ugly, but bearable. That lasted about 2 months after which I felt HUGELY better. Speculation is that I had an IRIS-like reaction. I was really sick when I started Valcyte, so this seems likely. It was a bad couple of months, but I'd do it again in a flash to get the same amount of improvement.

    During the 2nd round we have had no side effects whatsoever.

    We felt better in every way with Valcyte. The most noticeable improvements were in flu-like symptoms and cognitive symptoms.

    We were treating HHV-6. We take Valtrex for EBV. Valcyte may also be affecting the microglia, but I don't know how to tell.

    We had blood tests every 4-6 weeks during the first round of Valcyte. This time we are taking a lower dose and we know we didn't have problems before, so this round we tested monthly for the first 3 months and then switched to once every 3 months.

    Daughter's liver enzymes started to go in the wrong direction towards the end of her first round of treatment. The doctor lowered her Valcyte dose and her enzymes stabilized. No big deal.

    We take a liver support supplement while we taking Valcyte -- usually silymarin.

    Absolutely, I recommend Valcyte! I am extremely happy we did it. We asked for it again when our HHV-6 titres started to climb and symptoms started to increase. Nothing works for us like Valcyte. I've said it before, and I'll say it again -- they're going to have to pry it out of my cold dead hands.

    I didn't know the generic was available yet. My insurance pays for part of it, but it's still expensive.

    Make sure you get regular blood tests. If you're working with OMI, I'm sure they'll order them appropriately -- make sure you do them. The bad side effects (dangerous neutropenia, liver damage) are not common, but you don't want them. You can prevent them if you catch things going bad soon enough.

    We found that we improved much faster with Valcyte if we rested a lot. When we gave in to the temptation to do more as soon as we felt a little better, our progress slowed nearly to a halt. When we went back to pacing and resting religiously, we started to improve again.

    This is just a personal opinion -- I wouldn't do the high induction dose. It seems to me that too many people have bad side effects from starting at such a high dose and I haven't heard anyone doing better with it than with a standard dose or a start-low-go-slow protocol.
     
    Last edited: Jan 14, 2015
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  10. Gingergrrl

    Gingergrrl Senior Member

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    @SOC Thank you so much for taking the time to give me this info and I really appreciate learning more about you and your daughter's experiences.

    I also learned a significant amount about Valcyte today from a very kind person who spoke with me about their experience on the phone. I literally cannot thank all of you guys enough, from the bottom of my heart I am grateful, and I am now 100% decided that I am going to try Valcyte.

    I will be having my phone consult with my doctor on 1/26 to go over all my test results and new treatment plan unless I can get a sooner phone call. I have learned from all of you guys NOT to do the loading dose of 1800 mg and I now fully agree with this. I also may have mis-spoke re: the generic being out and if so, my bad. In either case, I prefer to take the Brand version and am prepared for an all-out war with my insurance company or applying through Genentech.

    I still have lots of questions in reply to all of your posts that I will need to postpone for tomorrow as I am still too exhausted to put all my thoughts together tonight. You guys are the absolute best :trophy::trophy::trophy::gift::gift::gift::heart::heart::heart:
     
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  11. RUkiddingME

    RUkiddingME Senior Member

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    Hi Gingergirl I don't know how to respond to the individual questions using the quote thing bur here goes :).

    I started with the loading dose of 900 twice a day for three weeks. I had my blood work done every three weeks at the beginning.

    Round one I was on it for 15 months. I graduated to having my blood work done monthly, then every six weeks.

    My blood work has remained in the safe zone except my Lipase level which has been fluctuating up and down. We are still unsure if this is due to the Valcyte as it had never been tested on me before this. Even two small swallows of wine or a fatty meal and my Lipase is abnormally high so I just avoid those things. Maybe my liver has trouble metabolizing on Valcyte which would make sense.

    I was extremely sick when I started on the first round, Completely bed ridden, unable to look after myself, unable to read, watch tv, listen to music, difficulty chewing food you name it. Needing to be pushed in wheelchair for appointments and unable to have eyes open in a moving car.

    I got sicker until the fourth month of Valcyte when I came back to life. I slowly regained a lot of my cognitive function and didn't have that constant sick feeling and the feeling that my brain couldn't fit in my skull.

    I also have to give some credit to LDN which helped tremendously with stiffness and mobility.

    My first round was for 15 months. I was off for a total of 2.5 months when it was decided that I should go back on ( you know the scoop from my Valcyte blog :).

    For round two I just started and remain with 900 mg once a day but went through the same worsening as round one for the first 4 months.

    I am on my 7 month of Valcyte round two and right now looking at another 5 months.

    I am on Valcyte to treat HHV6 and EBV. I have no co-infections.

    There is no guarantee that Valcyte works for everyone but boy oh boy it's definitely worth the try! I am leaving the house like three times a week and driving around, doing easy errands. I am sooooo happy to have some life back!!!

    We have the generic version in Canada made by Apotex but it seemed to give me insomnia ((which is the last thing I need lol). I got my family doctor to fill out an adverse reaction form and explained to my insurance company that I need Valcyte to have any quality of life and they agreed to cover my round two.

    Good luck Gingergirrl with your decision and know that the good folk at OMI will recommend the best course of action. I practically begged to be on Valcyte after a course of Famvir as I knew the possible side effects and with the absolutely no quality of life I had at the time, it was worth trying.
     
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  12. Gingergrrl

    Gingergrrl Senior Member

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    I am tagging @vli and @Antares in NYC to hopefully continue a discussion re: Valcyte over in the NK cell thread and bring it to this thread.

    I am very curious to hear both of your experiences with Valcyte as you said it was extremely difficult and I want to hear the good, the bad and the ugly! I am particularly interested in what doses you took and if Brand vs. generic.

    Thanks in advance!
     
  13. Gingergrrl

    Gingergrrl Senior Member

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    @jeff_w Do you remember if the intense nausea and headaches were from the loading dose of 1800 mg only or also with the 900 mg dose?

    @zzz This is extremely encouraging to me and thank you for sharing this. I was wondering since you have shared in other threads that you also had significant improvement to shortness of breath and cardiac symptoms from the magnesium by nebulizer, which was more effective in this area? The Valcyte or the nebulizer (or equal?)

    When you have a chance, can you point me to a thread re: the ciguatoxin epitope and stealth virus? I know you said there is no test for it now, so I guess it is all theoretical, but is this the same toxin that you mentioned in regard to surgery (or something completely unrelated?)

    @jimells what did you experience during the partial remission from Valcyte? What made you decide to stop taking it after six months or was this the protocol?

    I feel the same thing (that I will never get better if I do nothing) and it sounds like most of the people who have tried Valcyte do not regret it. Is it something that you would ever try again? Why or why not?

    @jstefl This is also very hopeful to me as I have been taking Midodrine and the last three days my BP has been around 88/58 and I have been feeling much weaker and more nauseous on top of everything else. I don't even mind taking the Midodrine, I am just finding that it is not working that great for me any more. I would love it if the Valcyte could somehow increase my BP. Is that a common thing to happen?

    So it sounds like the Valcyte regulated your autonomic dysfunction? Did you also have shortness of breath with the slightest exertion?

    Did you stop b/c your doctor told you to or b/c insurance stopped paying or for another reason?

    Thank you all for so much detailed info and I am going to ask my additional questions in a new post.
     
  14. Gingergrrl

    Gingergrrl Senior Member

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    @SOC, I know we have talked about this before but I don't recall the answer, how did the doctor determine that you'd had an IRIS reaction vs. a bad reaction to the Valcyte itself?

    What is silymarin? Did you take it the entire time that you are on Valcyte?

    I am pretty sure that OMI does the safety labs once a week in the beginning and then once a month after that. Believe me, I will definitely be doing the safety labs!

    I definitely will not be doing the loading dose based on the latest research from Dr. Montoya and talking to several patients. The dose that I hope to be prescribed is 450 mg 2x/day.

    @RUkiddingME Was Lipase a part of the standard safety labs or something they discovered with you by accident?

    I have read your entire blog (which is awesome!) but I didn't recall all the doses and length of time that you took it and appreciate the reminder here in my thread.

    That is amazing and I am no longer driving (at present) and would be thrilled to be able to drive three times a week and do easy errands on my own again. That would make me so happy.

    I am not sure how it works in Canada vs. the U.S. but did you have to apply for financial assistance through Genentech or did your insurance cover the whole cost?

    I agree and while I initially declined Valcyte b/c I wanted to try Famvir first, I am now at the point that I will practically be begging to try it, too!

    Thanks again to everyone who answered these questions on and off the board, I really appreciate it and can't say it enough.
     
  15. jeff_w

    jeff_w Senior Member

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    Only from the loading dose. They stopped after I went down to 900mg.
     
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  16. jstefl

    jstefl Senior Member

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    GG

    To answer your questions one at a time:

    I have no idea if others have increased their BP while taking Valcyte. I just know that it happened to me. As I said, I took my pulse and BP daily while taking the Valcyte. At first, there were wide variations in the readings, but as time went on, there was much less variation from day to day. Prior to starting Valcyte, I had been to three different cardiologists, two of them electro physiologists, including one at the Mayo Clinic. I had every conceivable test done, and of course, they could find nothing wrong. The first cardiologist ended up giving me a prescription for an anti depressant. The second gave me the Midodrine, and when I asked him what was wrong, he said that I was like a computer, and needed rebooting. The third one just referred me to a Neurologist.

    It was about this time that I found articles by Peckerman and Natelson on the internet. They seemed to be the only ones that understood that a viral infection can affect the heart. I suppose that the tests were necessary to rule out any potential problems, but it was very evident that when their tests didn't indicate any blockages, they were out of ideas.

    Before I started Valcyte I was extremely weak. The slightest exertion would cause shortness of breath. I nearly passed out every time I stood up, and I was afraid to drive as the brain fog was so severe.

    I stopped taking Valcyte at my doctors orders. Remember, this was back in 2008, and not that many people had taken Valcyte for CFS. My doctor had gone out on a limb for me by prescribing the Valcyte, and there weren't any studies published to guide him, or me, in the use of Valcyte. The use of Valcyte was at my request. I had blood tests from Focus labs, and a tissue sample analyzed by Dr. Chia that showed evidence of viral infections. These tests were at my request. My doctor would never have prescribed Valcyte without my urging, and I am very thankful that he went along with my ideas.

    The Valcyte didn't cure all of my problems, but helped me more than anything else that I have tried. I have gone from being almost bed bound in 2008 to being greatly improved today. I can now stand up without getting dizzy most of the time, I have much less brain fog, I sleep a lot less, my pulse and BP are still a bit low, typically 110/60, but are within a healthy range. I still don't like driving on really busy roads, but pretty much go where and when I want to. I am able to look after a grandson three days a week for 10 hours a day. I have three grandsons, 4, 3, and 7 months, and have one each day. I could not have done this before Valcyte.

    I, and several others, detailed our Valcyte experience on the HHV-6 foundation website http://hhv-6foundation.org
    This site is a great resource for information about Valcyte and other antivirals. If you read through the patient forums there, you can get a good idea of what to expect. While at a conference in 2008, I met the wife of Dr. Dharam Ablashi, and talked to her about her experience with Valcyte. She told me that she had been wheelchair bound before taking Valcyte. At the conference she claimed to be cured, and, from what I saw, she was pretty darned healthy. It probably helps to have a husband that was the co-discoverer of HHV-6, but I believe that a cure is possible for all of us.

    John
     
  17. Antares in NYC

    Antares in NYC Senior Member

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    USA
    Hi Gingergrrl,
    I took Valcyte for under 4 weeks late in 2013, and had to stop because of the awful side effects. These side effects ocurrred almost immediately, and were so intense at times that I worried I was getting worse. They included:

    - Tremendous nervousness, jitters, tremor
    - Along with the nervousness i had moderate bouts of anxiety
    - General ill feeling, profuse sweating
    - Nausea
    - But the absolute worse was the severe insomnia. It was so extreme that at first I spent 3 days with no sleep. Had to reduce the dose to get some rest, but it was still interfering severely with my sleep. I was even more of a wreck than usual.

    The sad part is that my doctor and I fought my insurance for months to approve Valcyte, and when they did, it was an extremely awful experience for me and had to stop the treatment. :-(
     
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  18. RUkiddingME

    RUkiddingME Senior Member

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    We are all rooting for you!!! I bet you will have a success story to tell as well! :))
     
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  19. jimells

    jimells Senior Member

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    northern Maine
    I have partial remissions periodically. The migraines stop. My physical capacity increases, I easily avoid PEM, I can actually engage in useful activities every day for a few hours. Other symptoms lessen or disappear. Gut issues don't change, though.

    But the remissions always end after a few months. Then it's back to the grind, or worse.

    I stopped the Valcyte because there was no improvement and I had lost confidence in the doctors who prescribed it. I lost confidence because I had only been to their office once, and really all they did was draw blood. I didn't need to travel 1000 miles round trip to find a phlebotomist. There was no discussion of the test results with the doctor. A nurse called and read notes handed to her. That's not followup, especially for this illness. I never did talk to the doctor (actually a family nurse practitioner) after the initial appointment.
     
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  20. RUkiddingME

    RUkiddingME Senior Member

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    Sorry Gingergirrl I still can't figure out how to answer the questions individually so they are mixed up above. The HHV6 did a number on my "stupid factor" and that's an area I hope to get back lol
     
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  21. jimells

    jimells Senior Member

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    northern Maine
    I'd have to see new evidence that I would likely benefit, e.g. tests showing active infections or that I'm in a subgroup that usually responds to it.
     
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