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Lessons from ME/CFS: Finding Meaning in the Suffering
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Trying valcyte again, so far so good

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by heapsreal, May 3, 2012.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    My previous attempts with valcyte using doses on 1 valcyte a day to 1 every second or third dose a day with my normal famvir has left me feeling really bad with fatigue and bad depression from it. During these trials i did have ongoing issues with severe sinusitis which i have sorted now by staying on 200mg doxycycline a day. I have also improved my dhea levels which were well below normal range to within the normal range. I am thinking its more the treating sinuses that has helped me able to tolerate valcyte this time. Also what i am doing is taking the valcyte at night instead of in the morning, so if i am feeling crappy from it i hopefully sleep through it.

    So far its been about 7 days taking 1 valcyte at night and 250mg of famvir in the morning and other then the first dose with abit of a brain sizzle, i havent had any issues with it. Too early to tell if its helping but i feel like im doing ok. My general stamina has been improving over the last couple of months in reguards to work. I have attempted some light exercise but at this stage it doesnt like me, lol. Cognitive and memory issues dont seem as bad. Its really hard to say if its the things im doing that are helping or im just in an up swing at the moment. Usually when i say im doing well i crash a few days later, so fingers crossed. I have had a few mini crashes but recovered ok from them. I am hoping the valcyte helps me improve to a level of being able to do some light exercise, recovery would be nice but not setting my sights too high yet.

    Maybe trying to treat other infections first could help people to tolerate valcyte better as well as hormonal issues etc. There have been some people i have read about who had ebv and hhv6 and treated the ebv first with valtrex or famvir and added valcyte later and had minimal issues with valcyte. Also dr lerners study on valcyte did mention that little improvement in people with co-infection unless co-infections were treated, so i think the sinusitis is my co-infection i had to sort first.

    cheers!!!
  2. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Good luck!

    GG
  3. Rooney

    Rooney

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    What's your valcyte dose?

    Good luck.
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Im taking one valcyte 450mg at night and famvir 250mg in the morning, prior to this my av dosage was famvir 250mg twice a day which helped alot, im hoping valcyte will put the nail in the coffin for these visues.

    cheers!!!
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    2 days on and im starting to feel like crap again. dont know if its valcyte or what, feels abit different. Getting more post nasal drip and head feels like a brick just like my sinus stuff. Kids were sick a few days a go with cold symptoms and recovered, now the wife is crook. With the strength of my nk cells i suppose i will just take another hit. Who knows if its a cfs crash or another dam bug. Its enough to give u the shits, but we all know that.
  6. SOC

    SOC Moderator and Senior Member

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    I don't think Valcyte will make you feel like crap so soon at that dose unless you have an individual disagreement with it. ;) It seems like most people who have a difficult period have it somewhere around 1-4 months when the immune system kicks back in. Drinking lots of fluid and getting lots of rest helps with normal Valcyte side effects according to Dr L, and I have found him to be correct. You are watching for neutropenia and liver function problems, right?

    I hope you feel better soon! With luck (!?!), you've just been bitten by the kids' bug and won't have to stop the Valcyte until you've been able to determine if it's going to help.
    vli likes this.
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Dam kids! Anyone want a couple? going cheap!
  8. m1she11e

    m1she11e Senior Member

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    Good luck to you Heaps. Funny thing is some people will say you wont feel bad from Valcyte from the get go and some will say it is a very good sign. I hope you can stick with it and it puts that nail in the virus coffin!!!
    heapsreal likes this.
  9. August59

    August59 Daughters High School Graduation

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    Hell no! I had my share and had thy royal nip and tuck. No more for me, but I wonder if that procedure in anyway played into my disease. There have been reports of the body building an autoimmunity response against long leftover activity.
  10. CBS

    CBS Senior Member

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    Heaps,

    Have you considered using a netipot or other nasal irrigation. I have a long history of nasal polyps and low grade sinus infection but after months on Valcyte it seemed like the sinus issues were getting worse. I finally decided to try nasal irrigation because I just didn't want to take any more meds and I was concerned that the Valcyte might be making me vulnerable to other infections. The bottom line was that after using the netipot 3-4 times a week for two weeks I felt dramatically better and in ways I had not associated with the sinus infections. I'm coming to the conclusion that any infectious process is likely to wear us out much quicker than it would in someone who was healthy. I'm now usng the netipot twice a week and every time I use it I have more energy and am much less run down that I did before using it. I should note that the whole nasal irrigation thing seemed a bit 'out there' to me before I tried it. I was hugely skeptical but I've found that I really do benefit from it.

    I'm starting to view dealing with ME as accumulating as many incremental gains as possible (at least until we learn to treat the underlying cause). Accumulate enough gains and you might be able to tip the balance so that the body's remaining innate capacity can start to get the upper hand. Nasal irrigation is something that I now see as a small but importnat part of MY arsenal.

    As always, FWIW.

    Take good care,

    Shane
    Sparrowhawk and heapsreal like this.
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    havent tried a netty pot but used other irrigations but i think cause its my frontal sinuses its impossible to reach them with irrigation. I think my issues the last few days is related to a common cold, i think ??
  12. OnlyInDreams

    OnlyInDreams

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    Just a heads up heaps, I had a chat with Dr. Lerner a few weeks ago and he stated that taking 450mg of Valcyte daily (1 pill) is not effective at all in treating cfs. Dr. Lerner confirms that you need to take at least 900mg of Valcyte daily in order for it to have any effect on cfs. Currently I am taking 1350mg daily (2 pills in the morning and 1 at night). I will reach the 6 month mark in November. I'm gonna start a new thread at some point to track my progress.
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Thanks for the heads up.

    cheers!!!
  14. TheMoonIsBlue

    TheMoonIsBlue Senior Member

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    I have read of quite a few people who only took 450 mg a day, due to liver enzye issues. Some even took it every other day. I believe they were seeing Lerner. Now this was a few years back. Also important to note that valcyte doesnt treat "cfs" as there could be so many different things causing the symptoms that need to be addressed. Valcyte is targeted therapy for HHV6a and / or CMV infection. All the best to everyone trying this therapy.....or anything else to treat this disease.
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I did read a study where valcyte at 450mg a day was just as efficient as 900mg a day at preventing cmv infection in organ transplant but with less sides. Reading this as well as the high cost of valcyte is why i use 450mg, also initial trials were unbearable on low doses. Im also using famvir which has some effect on cmv as well.

    cheers!!!
  16. TheMoonIsBlue

    TheMoonIsBlue Senior Member

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    I was on 1350 of valcyte and think that is why I had to stop side effects at about 8 month mark got unbearable, felt poisoned. I dont know why just lowering my dose wasnt presented to me as a option.

    Heaps, did you ever contact Roche to see if they offer any assistance to people in Oz for valcyte?
    terilynn likes this.
  17. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I got an email from them saying for my doc to contact them and they could maybe work something out but i didnt get that far as i found another source which i cant let out of the bag plus only a limited supply that i can do for approx 10 months at 1 tab a day, which im running with famvir. Last week in april was when i started, i think?? its doing something, i hope it is anyway but i will wait till i get to the 6 month mark before im confident.

    Are u on any other antivirals?? Have u thought of using a low dose of valcyte with maybe another antiviral?? Did u notice an improvement once off valcyte from where u were before u started??

    cheers!!!
  18. TheMoonIsBlue

    TheMoonIsBlue Senior Member

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    Haha, you got a secret source for valcyte? It's like we're talking about heroin or something lol. Does your supplier meet you in the middle of the night in some beat up van in a shaddy part of town? lol

    Short answer, the valcyte and maybe valtrex helped my cognitive symptoms. I felt a clearing in my ability to think after about 6 months. But I was on both valcyte and valtrex so I dont know which helped most.

    I tried valtrex again a short while ago. No good. Same symptoms as before, felt like my stomach was being ripped apart, looked 6 months pregnant, muscle pain and could not sleep. Only tried one generic famvir years ago, caused terrible muscle pain. Who knows maybe I have developed some allergy to all the acyclovir type AV's.

    I am glad I took them and I had no permanent lasting bad side effects. I dont think I would take valcyte again unless my titers were very high. HHV6 did go negative during treatment. But those damn EBV levels were still high even with 4 grams of valtrex and the valcyte.
  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    we all react very differently dont we. previous trials of valcyte i just couldnt manage due to really increased fatigue and depression but for some reason this time its not an issue.

    mm yes my supplier, its a crime that cfs is only recognised by a few doctors and medical authorities. My doc prescribed the valcyte and monitors me but trying to source it cost effective was a nightmare.

    Maybe another shot at famvir could be different?? i think its always good to retry previous treatments, sometimes for some unknown reason they can work differently.

    cheers!!!
  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Conclusions. Valganciclovir 900 mg showed no superiority efficacy compared to controls (ganciclovir or preemptive) and equivalent efficacy to VGC 450 mg (statistical power: 94% and 97%, respectively) for CMV universal prophylaxis.VGC 900 mg was significantly associated with 3 times increase in the risk of leucopenia and 2 times increase in the risk of rejection compared with VGC 450 mg.

    http://cid.oxfordjournals.org/content/52/3/313.full
    this was the study i was referring to previously, but its a different situation but does show 450mg may be effective for some of us cfsers.

    cheers!!!

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