Withdrawal / Valcyte

I rated my function at 40-50 % prior to starting the first course of Valcyte. My major symptoms were cognitive and ans. My job required a high cognitive functional level. When I was on Valcyte, my level of function was more like 20%. Even though my functional level was deteriorating these past 2 years, my cognitive function remained intact until very recently. The reason I didn't take any antivirals after the 7 months of Valcyte was that I felt I wouldn't be able to work. I stopped the Valcye after 7 months because of the continued severe symptoms.

When I saw Dr Montoya at the end of September he convinced me that the likelihood of me improving on another course of Valcyte was 100% . He has a population of patients who have been treated with valcyte initially then relapsed. All of the patients in this group who were retreated with valcyte improved. He also told me he has learned a lot over the past several years and no longer believes starting valcyte with a loading dose is important. He also believes that much longer courses of antivirals are probable necessary. Since I was so sensitive to this drug, he decided to start me on a very low dose. He told me to increase this dose gradually to avoid worsening of my symptoms every 3-4 weeks until a therapeutic level ( 900 mg) was achieved.

Gary

Gary, I took your experience and other published info and restarted with a half pill with first meal and same with last each day - after being off of Valcyte for a few days (whence I felt better). I stayed at baseline for 2-3 days then the side affects kicked back in, definitely not to the intolerable degree (for me) but for sure pronounced irritations, systemically and especially in the gut.

Did you get these kind of affects when you restarted at a lower dose? If so, I question if maybe Valcyte's SA are endemic and
not dose related (similar to the SSRI's diminishing libido, etc.). If not, then a panoply of questions arise, e.g. using the
wrong med to treat an underlying other symptom generator, and corrollaries. By that I raise the issue I can't find in any text
(and I've bought $000 of Microbio and clinical practitioner books learning how these buggers work), but I have yet to find the nature of the effects on a 'normal, healthy' person taking Valcyte (or alternative anti vitals), Especially in the herpesviridae families, which would give a clue to synthesize an hypotheses. Whatcha think?

Thanks, and how are you doing with the otherwise usual 'cycling' of ME/CFS?

Hi Stretched,

I did get symptoms when I started at the lower dose. Usually mild and went away in one or two weeks. I'm presently at full therapeutic dose (900 mg) without any side effects. It took me 11 weeks to reach that dose.

Presently I'm improving while on the Valcyte. My energy, sleep, PEM , and OI have all improved. No crashes over the past 3 weeks.
I have an appointment with Dr. Montoya next month.

I never increased the dose until the side effects abated.

I hope this is helpful for you.


Warm Regards,
Gary

Very helpful, thanks.

I'm at .5 x 2/day and still feeling like I fell off a cliff with systemic physical and emotional pain. Of course it could be something else comorbid, but it sure coincides with Valcyte ... and nothing else is showing up on routine blood work. (FWIW, two clinical reference journals do convey 'resistant strands' in IV use and suggest two other alternatives after only 10 days use... . My MD is learning as we go; fortunately she's had success locally in working with Dr. Chia, and is at least open minded. (I could be barking up the wrong tree, sic chasing after a long ago then active CMV, which is not currently 'visible' on my charts {could have mutated into a super-strand???})=-&

I would be very interested to learn of your outcome after your visit with Dr. Montoya. Does he convey goals
or tell you about degrees of improvement which you might expect (maybe as related to his other patients
who have a similar medical (or other) profile)?

Thanks again, and I hope to learn more from your ups and downs (hopefully > ups)!

Wow Gary...those words are music to my ears as I am in Valcyte HELL right now and even tho my brain feels like it is gonna EXPLODE I am trying to read through all of these posts... I feel like I have eaten rat poision... I took 1/2 pill for a week and then a whole pill for a week, had two decent days and then WHAMOOOO - DEATH warmed over...puking migraine, burning brain eyes and body..omg...AWFUL... And to read what you read about the 100% success rate with an exacerbation ... ohhhh baby!! I haven't been taking all that much knowing how my body responds to Abx of any kind but didn't expect this severe of a reaction... but I guess I should be excited from what you read! I tried to get into see Montoya but it was like 3 yr waiting so I am seeing Kogelnik. Have done 4 rounds of Rituxan and got worse...geeeeze this girl needs a BREAK! Thanks for your post... I will read all the rest tomorrow when I can see and think...my brains are SCRAMBLED...scarey bad...

Presently I'm improving while on the . My energy, sleep, PEM , and OI have all improved. No crashes over the past 3 weeks... . I have an appointment with Dr. Montoya next month.

Hi Gary,

I'm following up here as I'm curious as to how you fared on Valcyte. Would you care to post an update as to whether or not you are still on it and/or what course have your symptoms taken; change of protocol, etc?

FWIW, I gave up the Valcyte after 6+ weeks of pure hell. I went back to treating symptoms with rx's and supplements. They wax and wane - some good days, some crash days, but all better than the apex of reaction to Valcyte.

I'm likely to continue in this limbo mode until ethical medicine (huh!) delivers the 'right pill' or I research out some snake oil that cures all, maybe from a lost tribe in the Amazon %~)

Hi Stretched,
I've been on the full dose of Valcyte since February except when I traveled to Europe. I caught a severe cold which set me back. I stopped valcyte for two weeks than slowly restarted this med until I reached the full dose of 900 mg/day. This stratagy of slowly increasing the Valcyte dose until the therapeutic dose is reached seems to be a much easier way to tolerate Valcyte. I started on colchicine around Feb/Mar. My health has improved slowly with improved sleep, less brain fog, not as severe PEM, less crashes. I feel the medications I'm on have helped but also feel resting more played a role. My HHV6 levels have dropped from 1:360 to 1:80. My next appt with Dr. Montoya is in August. I will write a follow- up after my appt.

Regards,
Gary

Thanks for the update. It's good to learn you are faring well.

Apparently you are attributing your improvements , sic from 40-50% pre morbid to a higher level allowing you to travel abroad (brave soul). OTOH, you seem to equivocate on the contribution rest has played -

Inquiring minds plead to know: in hindsight do you think you might have enjoyed the same up activity w/o the meds, I.e. by
more rest?

I ventured abroad during an earlier phase of CFS and my first night in Wurzberg I was literally out on my feet AND was aware of it -
very scary. A week later in Bern we arrived just before dusk. I got so confused a bus driver stopped and walked me through an
intersection! (Very caring and considerate I found the Germanic countries). After each event I was okay the next day but had to
rest up before trekking further.)

In recounting this to my then skeptical doc he opined that the excitement of these new experiences caused an overproduction
of adrenaline and that my system, on overdrive, quickly dissipated the build up. Made sense then and not far removed
from some current hypotheses. (Rather implies more rest = more equanimity ??? But where's the tipping point...?)

Follow up question re your successes AND HHV6 lower titers: are you now more or less of the thinking that 'your CFS' is a function
of or a derivative of enteroviruses? (FWIW, I tried the Valcyte as a SWAG for a suspect residual CMV which is related (HHV5) but
w/o success. My deduction is that the cause of 'my CFS lay elsewhere but close. For example, a variatiion (mutation, or even long term effect of vaccination) of the Polio virus would not be mutually exclusive and could explain the ubiquity of this illness???

My doc said she did not even know HOW to test for it! Has Montoya ever hinted at this prospect?

Thanks again for recounting your experience to date with this conundrum, I.e. confusing disease, where researchers
are getting closer - still, no cigar, yet! IMHO, Montoya is close; further, he deserves being new Jonas Salk. 'Look forward
to hearing more of your experience and thoughts on this heavy load!

Ciao.

Hi Stretched,

I do believe that the medications have had a positive affect. The first time I took valcyte, I didn't rest. I believe this retarded my recovery. Dr Montoya stresses multiple times the importance of rest while on the medications. He strongly believes people who are being treated overdue it when they start to improve, hence starting a push/pull crash sequence. This was certainly true with me. Presently it is a challenge for me to hold my activity level stable, I.e. not increasing it as I improve. My personality type, "A", makes this difficult.

I believe the cause of my disease is a genetic predisposition to immune disjunction triggered by a viral infection. My mother has takiasu arthritis, one of my brother has MS, and my youngest brother has cfs. I have three aunts with pancreatic cancer, three cousins with breast cancer and a grand mother with breast cancer. All my cousins are BRCA2 positive. I recently had blood drawn to test for this gene mutation. My disease started with a severe uri.

How long we're you treated with valcyte before you stopped? Dr Montoya feels that treatment may be necessary for 1 to three years. I didn't notice improvement the first time until I finished a seven month course. I feel strongly that the first time around, I started on too large a dose which made me feel very sick during the entire treatment period. This time it has been hugely better by starting on a very low dose and then increasing it slowly over 3 months.

Regard,
Gary

Addendum: I just reread one of your post. I wonder if you stayed on the lower dose for as long as it takes to reach your baseline, then slowly increased it until you are at full therapeutic dose, if that would allow you to tolerate the valcyte. It took me 3 months to reach the therapeutic dose starting out at 225 mg/d for one month. At least this seemed to work for me.

Hello Gary,

Long answer to short question but some good may evolve ... and thanks again for posting some good points in your resolve to use Valcyte to cure your X (ME/CFS?). It's very helpful to compare and contrast AND to consider the permutations between the lines.

The reason for my continued interest in your story is that I was pondering whether or not to go back on Valcyte and titrate up. Your having perhaps the best viral-oriented MDs in the land lends a lot of credibility to your
experiences with it.

I had followed CFS general research prior to finding Dr. M's work at Stanford before taking the plunge with Val.
It seemed logical to me to try it in that nothing had shown up for me after years of testing by non-cfs docs, EXCEPT for an active CMV some 10+ years ago. I thought this class of virus (hhv-5) was close enough to Montoya's research(same viral family) that it just might be the ticket.

I only used Valcyte for 6 weeks and 4 of those were at full tilt until I felt like something seriously adverse was amiss. So I cut it in half, got some relief from that but was still much sicker than without it. So I bailed and continued treating individual symptoms with ethical rxs and neutra-ceuticals to this day.

I'm still sick with the usual CFS/ME syndrome of symptoms. Like you I have an 'A' type background (which
may have lead to my illness). However, no viral related illnesses are known in present or past bloodlines except
for grandmother on father's side. She seemed to have 'everything' and was basically patronized but I didn't think she was a hypochondriac. She passed a couple of years before I became ill so I never got to discuss the specifics of her afflictions, one of which was shingles (zoster virus).

My current MD has withdrawn, not really knowing how to proceed further, and I have an $8k supply of Val in the frig. My dilemma: restart and titrate up w/o MD supervision (risky) hoping for the brass key, or conclude
that it wasn't the right drug for whatever causes my illness. (Donation of Valcyte may be problematic.)

FWIW, I have multiple viral reference books by highly respected authors/editors - the very expensive kind Montoya and his colleagues likely use and contribute to. I can usually get through/around the tech speak and find the
salient points. There is one reference in a clinical practioner book wherein the author states (paraphrased):
'treating CMV w/Valcyte…when positive results are not seen in 10-14 days…the virus is likely Valcyte resistant and foscarnet and cidofivir are alternatives!' Granted this is a hospital setting with IV use but the resulting affect seems to imply to me, arguably, that the same or similar resistance likely applies to the longer interval determinant from oral administration; and this is what I experienced short term???

Thus I'm twiddling my thumbs in deliberation while searching for my next primary care doctor, and frustrated
in advance because by definition they are not up on this subject=-& However, I wish you continued success
with Valcyte and hope you will continue to post on your progress - maybe ask Dr. M about the above ❡.

Regards from Atlanta.