• 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 become a member, simply click the Register button at the top right.

Cutting Valcyte 450 pills in half

PearlGirl26

Living with CFS for years, recently diagnosed.
Messages
65
Location
CA
I'm about to start tapering done off Valcyte, but am very worried about withdrawal symptoms. I had to take a few weeks off about 6 months ago and it was terrible. I only did 3 days of 450 and then went cold turkey.

My question is, has anyone cut the pulls in half and gone slower, say down to 675? The patient insert says not to cut the pills in half. I'm assuming this is because they don't want to expose others to the drug I've only seen one other thread mention this here with one person's response. Hoping for more from people who have done this. Thanks!
 

Butydoc

Senior Member
Messages
790
I'm about to start tapering done off Valcyte, but am very worried about withdrawal symptoms. I had to take a few weeks off about 6 months ago and it was terrible. I only did 3 days of 450 and then went cold turkey.

My question is, has anyone cut the pulls in half and gone slower, say down to 675? The patient insert says not to cut the pills in half. I'm assuming this is because they don't want to expose others to the drug I've only seen one other thread mention this here with one person's response. Hoping for more from people who have done this. Thanks!
Hi PearlGirl26,

I started my Valcyte at 225mg which meant I had to cut the tablet in half. No problems at all. My CFS doc, Dr. Jose Montoya, actually recommended I start this way. He is a professor of infectious disease at Stanford. I stopped my Valcyte after 1 1/2 years cold turkey without any withdrawal symptoms or worsening of my CFS symptoms.

Why do you believe that you must taper your dose?

Best,
Gary
 

PearlGirl26

Living with CFS for years, recently diagnosed.
Messages
65
Location
CA
Thanks for getting back to me so quickly. I mentioned in my post I had gone off it 6 months ago for a few weeks and it was terrible. Maybe it will be better this time. Frankly, it's been awful the entire time. I'm hoping maybe just lowering the dose will be enough to cut down on some of the side effects.
 
Last edited:

RUkiddingME

Senior Member
Messages
220
Location
Canada
Hi there, I also was told to stop cold turkey and I never noticed any difference but everyone is different. I was off the drug only 2.5 months and I had to go through the same process all over again when I restarted with weeks 7-13 being really bad before feeling better. My entire experience is documented here http://forums.phoenixrising.me/index.php?entries/valcyte-2014-round-2-week-9.1651/. Good luck!!
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,086
Location
australia (brisbane)
i cant see a reason to taper off antivirals, although many stop valcyte and go onto valterx or famvir to keep the viruses down that the good work valcyte has done.
 

Butydoc

Senior Member
Messages
790
i cant see a reason to taper off antivirals, although many stop valcyte and go onto valterx or famvir to keep the viruses down that the good work valcyte has done.
Hi Heapsreal,

I mostly agree with you that stopping Valcyte shouldn't cause a withdrawal reaction since as an antiviral it works by inhibiting replication of viruses. There is the possibility that in some individuals it acts as an supressor of microglial cells and by stopping this drug abruptly might cause a rebound or increase in microglial activation.

Best,
Gary
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,086
Location
australia (brisbane)
Hi Heapsreal,

I mostly agree with you that stopping Valcyte shouldn't cause a withdrawal reaction since as an antiviral it works by inhibiting replication of viruses. There is the possibility that in some individuals it acts as an supressor of microglial cells and by stopping this drug abruptly might cause a rebound or increase in microglial activation.

Best,
Gary

Could be, just havent seen it with people on this board i guess. SOme people relapse, maybe that could be a sign that one needs to taper off.

One thing i wonder about with the microglial theory, is that if the reduce inflammation quite quickly as in say a few days to a week or so, people should feel alot better when they start but this doesnt seem to happen.

I guess we just dont know. I guessing that testing microglial is only in the research setting?