• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To register, simply click the Register button at the top right.

Restarting Valcyte Today

Hello All,

My Name is Brent and I'm just starting my blog entries here on PR. I intend to use this as a vehicle for information about my use of Valcyte which is starting today... :thumbsup:

A little background for me: I came down with a viral infection late in 1989 and was later diagnosed with post-viral fatigue syndrome that has since been deemed ME/CFS.

I did a 6 month regimen of Valcyte back in 2008, which worked very well for me. Led a significantly improved lifestyle for about 18 months until I crashed hard during the summer of 2010. Since then, have been trying other methods to try and control my symptoms without any resolution, so I've convinced my Internist to restart me on the Valcyte. Should also mention that I was diagnosed with a mild case of POTS back in May of 2011 - am currently on Florinef 0.1mg daily for that. Noted on Dr. Lerner's website that Valcyte may help resolve this problem as well.

Last time around, I used a voice recorder to document my experiences with the drug, but haven't ever transcribed it to text - might get around to it some day and post the entries here. This time around, I plan on posting to this blog so that others might benefit from my trials and tribulations. ;)

One of the tools I plan on using during this process is the activity scale that is used by PR in our profiles:
  • 0 - Bedridden constantly
  • 1 - Mostly bedridden
  • 2 - leave house once a week, concentrate 1/hour a day
  • 3 - leave house several times/week, two hours work/activity at home a day
  • 4 - 3 to 4 hours of work/activity a day
  • 5 - four to five hours/activity a day
  • 6 - six to seven hours/activity a day
  • 7 - able to work full-time but with difficulty
  • 8 - near-normal activity level but still symptomatic
  • 9 - normal activity level, mild symptoms
  • 10- fully recovered

Another item to mention: I am planning on dosing differently this time from last time. In 2008, I used a copy of the Montoya preliminary study to guide my treatment (900mg twice daily for 3 weeks, then once daily for the remainder of a 6 month period). That treatment plan ended up in my having to take 6 weeks off from work and shaving my head (couldn't raise my arms above my shoulders - couldn't wash my hair...).

Can't do that again due to issues with my current employer, so I'm going to try a variation of Dr. Lerner's treatment plan and begin with a low dose. Starting with 450mg daily until I can handle more and increase slowly until reaching 1350mg daily. Hopefully, this method won't require me to take off work as I can't afford to do that. :(

My Internist has asked that blood work be done every 4-6 weeks and had me do a CMP and CBC w/o diff yesterday prior to filling the script. I plan on reporting trends in my blog posts.

One thing to note about Valcyte -> it's expensive as hell! This first month of partial dosing has fulfilled my entire annual deductible for my family's insurance ($2,800). Thankfully, the rest of the year should be much more reasonable.

If you have any questions about how things are going for me, or about Valcyte in general, feel free to comment and I'll write back as soon as I'm able.

Thanks for reading!! :D

Weight: 261.0 lbs

Activity Level: 4-5, depending on the day

Current Dosing: Predose

Lab values of note: None


citychanger;bt6425 said:
Good luck Brent! I'm planning on starting Valcyte as well, for the first time
Good luck to you too! Hope it works well for you and you have a minimum of complications. ;)
So when u first used valcyte and had bad die off type reactions, did this resolve when u lowered the dosage?? I will be interested to see how different starting off at lower doses go's for you, fingers crossed you dont need time off work.

What viruses have u tested positive for? cmv and or hhv6??

Did you or have you considered another antiviral after you finish valcyte? Many people tend to revert to valtrex or famvir which can help keep the gains made by valcyte.

Hope u keep the blog going. I will be watching with interest.

good luck,
heapsreal - I took the high dose for 3 weeks and had the "die off reaction" start on day 3. I took off work starting that day and didn't return for 6 weeks. I seem to recall that at week 4 I started feeling better, but was empty energy-wise. One of the hardest things I've ever done was shaking that emptiness and getting back to being a normal person. I ended up taking a 2 mile shamble (think zombie - the really slow ones) that took me almost 4 hours. I cried several times during the journey, but still forced myself to place one foot in front of the other. Thankfully, there was a Perkins at the other end of my sojourn. Had to call my wife afterward to come get me. That was the turning point for me in returning to some semblance of humanity. Rather dramatic now that I think about it... ;-)

I have tested negative for every virus that they've thought to test me for. Obviously, I have a significant infection of some virus - just not sure which one, or not using the proper testing facility to get correct answers/values.

I stopped taking the Valcyte just before Halloween in 2008. I haven't taken anything antiviral since then (until yesterday). My plan, this time around, is to take the Valcyte for up to 2 years and then fall back to Valtrex to (as you said) "help keep the gains made". Last time, we (Internist and I) didn't know that it would come back... We only had the paperwork from the Montoya study that we were basing everything off of, and that didn't have any long-term conclusions attached to it.

The blogging will continue - especially these first few months when things are most volatile. After things settle down, I'll obviously have less to tell everyone. I'll probably slow down at that point. Might start posting some of the entries from the first round then, we'll wait and see how things go. :D

Thanks for the luck!
Cheers back!!
I've heard that Montoya no longer starts patients at 1800mg per day for 3 weeks, this was too much. EXCEPT for the rare cases of Chromosomally integrated HHV-6A, which is a different deal.

I am not sure why someone would take more than 900mg of Valcyte per day. The conclusive studies clearly state this is the safe, effective and successful porotocol for up to 75% of patients in the subset having elevated antibody titers of 3x positivity or more on their EBV Nuclear IGg and HSV-6 Igg titers, then CMV if present. Valcyte will not absorbe properly into the body unless it is taken with a fatty type meal of 1200 calories or more; for optimal absorption. This is why they say to take the full 900 mg afyter dinner. Then we can sleep off any unwanted side effects as well. I can see how if you work the night shift, you would take it with your dinner in the morning before sleeping.

We don't have enough doctors that know what they are doing with anti-viral treatment and hearsay has gone haywire on dosage and administration amongst patient populations. The saddest part, some patients may benefit from Valcyte but are taking the incorrect dosages or mixing it with other anti-virals and getting sick. I look forward to the day when we have more doctors who care about us and can treat us.

Besides the viruses, many of us have so many co-infections and know we know the co-infections don't show up until the HHV-6 and EBV are weakened. I've been battling mycoplasma and chlamydia pbuemoniae and coxsackie. My sons HHV-6 titers lowered after 3 years, then echovirus A&B, Coxsackie, VZV and chlamydia Pnuemoniae reeared their head in high numbers. Until docs get a grasp on monitoring and treating all these viruses and opportunistic infections, we are not going to fully heal.

Upside, I've talked to hundreds of patients who were in the worst of the worst shape, and many have healed 100%. nIt takes time and nailing these danged infections plus finding ways to build our immunitiys back up (until that piece of the puzzle ius solved by researchers) I hope this 2nd time around on Valcyte brings better luck. I think everyone knows by now, that the only reliable lab for testing and treating is Quest/Focus laboratories. This is another problem, patients are getting false results elsewhere.....
Hi Julia,

I likely started my previous round of the Valcyte before such determination was made. It was just after his preliminary study was completed. I'm glad that Montoya rarely starts people at that dosage anymore - it was really tough to get through, despite knowing what I was getting myself into. Thank you for all of the information in your post for the readers of my Blog! I'm sure that they'll find it as interesting as I have. Thank you again for all of the positive thoughts and well wishes!


Blog entry information

Read time
3 min read
Last update

More entries in User Blogs

More entries from ArgyrosfeniX

  • R3 / Day 35
    Hello Everyone, It's been an interesting time the past few weeks...
  • R3 / Day 19
    Hi Everyone, Things have improved some, but I can still induce PEM /...
  • R3 / Day 12
    Hi Everyone, This weekend was rather interesting. Got a handful of...
  • R3 / Day 9
    Hi All, Things are improving already. My wife told me 2 nights ago...
  • R3 / Day 6
    😁 Things seem to be improving some. Yesterday and today had a few...