Valcyte so far

[Who Me?]

I started on Valcyte the end of May when I got and ID doc to monitor me (he won't RX it).

I started on 450 mgs and had zero problems. I was trying to decided, stay at 450 and see how it goes before I increase or just smash the viruses and take 900. Lots of people start 900 or higher so I thought why not?

I upped to 675 first. Day 2 I had a mild headache and a bit of nausea that went away. I did that for 4 days and then upped to 900 mgs.

On day 2 of 900 mgs, again , mild headache and nausea but boy did I feel good. And remember feeling good is relative, anyone normal who felt like me would be in the ER. But I could talk and not get tired, get a sore throat and not crash the next day. Problems I have with air hunger were starting to go away. I had a bit more energy and could do stuff every day without PEM. I mean small stuff like laundry or changing the sheets. I was not running marathons or walking the malls.

Then BAM! Two days ago I was so bloated I could just feel the gas in there. It never ended. But worse was that it messed me up psychologically. I was crying on and off (who cries watching Penn and Teller?) and I was convinced I had colon cancer. This went on for 2 days. Both these are side effects of Valcyte.

This morning I backed down to 450 mgs and the bloat is pretty much gone except for my usual from IBS. And I don't feel like I'm going nuts anymore. BUT I also feel horrible. Every good thing I felt is gone. I don't know if it's PEM from doing too much or just back to square one.

I'm getting labs done on July 16th and once that's done I'll decide what to do. I either need to stay at this dose awhile and get used to it or I'm tossing around going back up to 675 mgs and see if I can find the "sweet" spot in dosing.

Lots of people say they feel really horrible for months and I could probably deal with the bloat, it was the mental stuff that was doing me in.

But I continue to plug away. My positive result at a week of 900 mgs shows I'm on the right track.

 

[Merry]

I started on Valcyte the end of May when I got and ID doc to monitor me (he won't RX it).

I started on 450 mgs and had zero problems. I was trying to decided, stay at 450 and see how it goes before I increase or just smash the viruses and take 900. Lots of people start 900 or higher so I thought why not?

I upped to 675 first. Day 2 I had a mild headache and a bit of nausea that went away. I did that for 4 days and then upped to 900 mgs.

On day 2 of 900 mgs, again , mild headache and nausea but boy did I feel good. And remember feeling good is relative, anyone normal who felt like me would be in the ER. But I could talk and not get tired, get a sore throat and not crash the next day. Problems I have with air hunger were starting to go away. I had a bit more energy and could do stuff every day without PEM. I mean small stuff like laundry or changing the sheets. I was not running marathons or walking the malls.

Then BAM! Two days ago I was so bloated I could just feel the gas in there. It never ended. But worse was that it messed me up psychologically. I was crying on and off (who cries watching Penn and Teller?) and I was convinced I had colon cancer. This went on for 2 days. Both these are side effects of Valcyte.

This morning I backed down to 450 mgs and the bloat is pretty much gone except for my usual from IBS. And I don't feel like I'm going nuts anymore. BUT I also feel horrible. Every good thing I felt is gone. I don't know if it's PEM from doing too much or just back to square one.

I'm getting labs done on July 16th and once that's done I'll decide what to do. I either need to stay at this dose awhile and get used to it or I'm tossing around going back up to 675 mgs and see if I can find the "sweet" spot in dosing.

Lots of people say they feel really horrible for months and I could probably deal with the bloat, it was the mental stuff that was doing me in.

But I continue to plug away. My positive result at a week of 900 mgs shows I'm on the right track.

Good luck. You are brave.

 

[Cort]

I started on Valcyte the end of May when I got and ID doc to monitor me (he won't RX it).

I started on 450 mgs and had zero problems. I was trying to decided, stay at 450 and see how it goes before I increase or just smash the viruses and take 900. Lots of people start 900 or higher so I thought why not?

I upped to 675 first. Day 2 I had a mild headache and a bit of nausea that went away. I did that for 4 days and then upped to 900 mgs.

On day 2 of 900 mgs, again , mild headache and nausea but boy did I feel good. And remember feeling good is relative, anyone normal who felt like me would be in the ER. But I could talk and not get tired, get a sore throat and not crash the next day. Problems I have with air hunger were starting to go away. I had a bit more energy and could do stuff every day without PEM. I mean small stuff like laundry or changing the sheets. I was not running marathons or walking the malls.

Then BAM! Two days ago I was so bloated I could just feel the gas in there. It never ended. But worse was that it messed me up psychologically. I was crying on and off (who cries watching Penn and Teller?) and I was convinced I had colon cancer. This went on for 2 days. Both these are side effects of Valcyte.

This morning I backed down to 450 mgs and the bloat is pretty much gone except for my usual from IBS. And I don't feel like I'm going nuts anymore. BUT I also feel horrible. Every good thing I felt is gone. I don't know if it's PEM from doing too much or just back to square one.

I'm getting labs done on July 16th and once that's done I'll decide what to do. I either need to stay at this dose awhile and get used to it or I'm tossing around going back up to 675 mgs and see if I can find the "sweet" spot in dosing.

Lots of people say they feel really horrible for months and I could probably deal with the bloat, it was the mental stuff that was doing me in.

But I continue to plug away. My positive result at a week of 900 mgs shows I'm on the right track.

Wow....Nothing seems to come easy. That positive result, I agree was really encouraging.. Are you dealing with a doctor that has much experience with this drug? I wonder if you could contact Dr. Lerner- he might be willing to communicate with you. I'll send you his email.

Good luck! And thanks for sharing how you are doing.

 

[Who Me?]

@Merry, I don't consider it brave just the next logical step for me. I've felt much worse on more benign things.

I felt MUCH better today. All psych issues are gone and i haven't cried once! I was up at 6:30 a.m cleaning up the mess that had accumulated the last few days, made a few phone calls and feel pretty good. For me. It's all relative.

I'm still bloated but I'm not even sure if it's the Valcyte. I have IBS and this is pretty normal for me. Certainly not enough to make me stop taking it.

@Cort Thanks for the information about Lerner. I tried Valtrex and that really screwed with my brain. It was after a day where I had screamed at pretty much every one I came in contact with that I realized something was not right.

Even if he was willing to see me/rx the stuff, my insurance wouldn't cover it. It's still considered name brand and needs prior authorization.

It's probably cheaper for me to get it where I am now, the ID doc is monitoring me with labs so not sure what else anyone can do. Even if the ID doc wouldn't monitor me, I can get the CBC and Metabolic panel for about $44 through Lab Corp and let my NP monitor it.

 

[Cort]

So, my dear, how are you today? An update please!

 

[Who Me?]

@Cort i dropped back down to 450 and my gut stuff settled down. The psych stuff went away immediately

It's hard to tell what it's doing because, well I habr ME. I was able to make a few short phone calls yesterday and didn't feel tired but this morning is horrible.

But that could be unrelated because im dealing HPA axis issues.

I get labs tomorrow. I'll see how that goes and then think about going up to 675. Maybe I can find the sweet spot.

But I wasn't expecting anything huge overnight.

I am also now using Cipla generic. Not sure what I had first. It was a "donation".

 

[Cort]

It does t

@Cort i dropped back down to 450 and my gut stuff settled down. The psych stuff went away immediately

It's hard to tell what it's doing because, well I habr ME. I was able to make a few short phone calls yesterday and didn't feel tired but this morning is horrible.

But that could be unrelated because im dealing HPA axis issues.

I get labs tomorrow. I'll see how that goes and then think about going up to 675. Maybe I can find the sweet spot.

But I wasn't expecting anything huge overnight.

I am also now using Cipla generic. Not sure what I had first. It was a "donation".

I know Valtrex can take quite awhile. Don't know about Valcyte (??). Interested to hear how the labs are doing.....

 

[Who Me?]

I'm not expecting anything huge. I never have. I just want to slow things down.

I've been sick for a long time and my CMV (high IgM) has been left unchecked for a few years. As long as I can keep paying, and my organs don't liquify, I'll keep taking it.

Whatever was going on with me this morning has passed. I think my dysfunctional HPA axis is causing me a lot of trouble.

I have an appointment with my NP next week so hopefully I can get going on some stuff for that.

 

[Who Me?]

@Cort Update. So Wednesday I had a doc appointment at 11:30 a.m. I usually Skype but her camera was out so I decided to go in. I never go out that early, never even talk that early but I thought it would be a good test for the Valcyte. This is the first time I've been out since being on it, maybe 7 weeks?

The appointment was good, I felt good and was home by 12:30. I made a few phone calls and wasn't amped up like I usually am after going out.

Yesterday I felt good. I'd never know I'd been out the day before. I even tested it by making a phone call around noon. But the real test was today because my bad PEM day is usually 2 days later.

So I'm not cured. LOL Had PEM today. Not horrible but enough. Still feeling it now. I'll check back in when I know how long this lasts.

I had labs done on the 16th. Waiting for the results. If they are good I may up to 675 mgs since 900 was way too much for me with side effects.

 

[Snookum96]

That's great that you were able to go out after 7 weeks. Best of luck to you for the next few days, hopefully we will hear from you soon

 

[Who Me?]

I go out for doc appointments but there's always a price to pay.

This wasn't as bad. It'll be interesting to see when I'm back to baseline.

 

[Cort]

At least you retain your sense of humor Minx! "so long as my organs don't liquefy" . That gave me a nice chuckle

I'm not expecting anything huge. I never have. I just want to slow things down.

I've been sick for a long time and my CMV (high IgM) has been left unchecked for a few years. As long as I can keep paying, and my organs don't liquify, I'll keep taking it.

Whatever was going on with me this morning has passed. I think my dysfunctional HPA axis is causing me a lot of trouble.

I have an appointment with my NP next week so hopefully I can get going on some stuff for that.

 

[Cort]

@Cort Update. So Wednesday I had a doc appointment at 11:30 a.m. I usually Skype but her camera was out so I decided to go in. I never go out that early, never even talk that early but I thought it would be a good test for the Valcyte. This is the first time I've been out since being on it, maybe 7 weeks?

The appointment was good, I felt good and was home by 12:30. I made a few phone calls and wasn't amped up like I usually am after going out.

Yesterday I felt good. I'd never know I'd been out the day before. I even tested it by making a phone call around noon. But the real test was today because my bad PEM day is usually 2 days later.

So I'm not cured. LOL Had PEM today. Not horrible but enough. Still feeling it now. I'll check back in when I know how long this lasts.

I had labs done on the 16th. Waiting for the results. If they are good I may up to 675 mgs since 900 was way too much for me with side effects.

So some moderate results...no organ liquefaction yet - that we know of - we'll see how it goes. Maybe you can slowly work your way up.
Lerner is now doing Vistide by the way - he's going to put out something on that.

 

[Who Me?]

I was quite funny in my previous life! I don't feel bad today at all, so this is good. My last venture out was rough and took almost a week to recover from. I think that had a lot to do with horrible transportation.

I'm not really going to get much help from the docs I'm seeing. The ID doc won't even RX Valcyte. He treats the labs not the person, so getting any of the newer stuff is just not going to happen. And my "allergist" (aka immunologist) is a dick, so he's gone.

My plan is in 2017 to go on straight medicare because I can get a gap plan then. Then I can see who I want. Right now copays are just too much to go on medicare without a gap.

 

[Cort]

I was quite funny in my previous life! I don't feel bad today at all, so this is good. My last venture out was rough and took almost a week to recover from. I think that had a lot to do with horrible transportation.

I'm not really going to get much help from the docs I'm seeing. The ID doc won't even RX Valcyte. He treats the labs not the person, so getting any of the newer stuff is just not going to happen. And my "allergist" (aka immunologist) is a dick, so he's gone.

My plan is in 2017 to go on straight medicare because I can get a gap plan then. Then I can see who I want. Right now copays are just too much to go on medicare without a gap.

You're still funny!

Most immunologists are just allergists! I just learned that one....That sucks...

Good luck with Medicare - that sounds like a good plan...

 

[Who Me?]

@Cort he's beyond a dick. He wants me to have a psych evaluation to make sure my disease is really physiological.

And he wrote in quotes that I said "I feel like I have a virus". Hence my mental instability even though In a previous paragraph he cites my high viral titers

And best, he says there is no documenation that neurocognitive issues cause immune disorders. Huh?He pulled that out of his ass.

I'm waiting to find one thing out about Medicare then contact my pcp. If I do decide to pursue it I refuse to have this guy be my doc.

Oh there are clinical immunologists. One of the best one is near me but my insurance won't send me to him. So if I wait, I can see him. In fact 20 years ago he was treating CFS at UCI and using interferon injections.

Now that I write this I'm thinking I should just wait. I've waited this long.

Did I say he was a dick?

 

[Who Me?]

Oh valcyte update. I'm in day 2 of 1 1/4 tablets (depending on my cut)

I tried 1 1/2 but I immediatly got the horrible painful bloat.

I'm not sure if this extra 112 mgs makes that much of a difference but Lerner rx's high doses do I'll keep at it if I can tolerate it.

 

[Cort]

@Cort he's beyond a dick. He wants me to have a psych evaluation to make sure my disease is really physiological.

And he wrote in quotes that I said "I feel like I have a virus". Hence my mental instability even though In a previous paragraph he cites my high viral titers

And best, he says there is no documenation that neurocognitive issues cause immune disorders. Huh?He pulled that out of his ass.

I'm waiting to find one thing out about Medicare then contact my pcp. If I do decide to pursue it I refuse to have this guy be my doc.

Oh there are clinical immunologists. One of the best one is near me but my insurance won't send me to him. So if I wait, I can see him. In fact 20 years ago he was treating CFS at UCI and using interferon injections.

Now that I write this I'm thinking I should just wait. I've waited this long.

Did I say he was a dick?

You just make me laugh Minx....yes you said he was a dick. These are the dark ages of ME/CFS (and FM)......We're definitely living through the dark ages...

 

[Cort]

Oh valcyte update. I'm in day 2 of 1 1/4 tablets (depending on my cut)

I tried 1 1/2 but I immediatly got the horrible painful bloat.

I'm not sure if this extra 112 mgs makes that much of a difference but Lerner rx's high doses do I'll keep at it if I can tolerate it.

Good luck! Slow and easy on the increases...

 

[Who Me?]

...We're definitely living through the dark ages...

I've only had one other doctor even bring it up and he had the balls to say it to my face, sort of.

He had replaced my old PCP and asked me every which way he could to try to get me to say I was depressed. When I called him on it was shocked that I knew what he was doing. Duh. How obvious can you be?

I don't remember what I said, if I even addressed it, but I immediately went home and got a new pcp.

This guy didn't even have the nerve to say it to my face.

If you saw bus letter to my PCP you wouldn't believe. Not only does he not know about ME but he is clueless about immune disorders like CVID.

just had another idea. Thanks cort you get me thinking.