Valcyte (plus) Update

[SOC]

I'll cheer for you! Excellent news.
And do you have POTS or OI symptoms? Gatorade and salt intake could help keep you up, too.

Thanks for the info! My POTS/OI symptoms are fairly mild, but now that you've made me think about it, it might not hurt to increase the salts intake to see if it makes a difference.
Kinda nice, in a weird sort of way, to be working on the symptoms that were so low down on my priority list. *grin*

My daughter has been prescribed Florinef and extra K to increase her blood volume since even increasing her salt intake didn't manage her POTS/OI symptoms. So far, they've worked pretty well for her.

 

[Andrew]

Hi Sickofcfs. Great news! It's so nice when one of us gets better.

A doctor recently offered me Valcyte, without even ordering any tests for infection. All he wants to see is my liver test to see if I can handle the medication. He said Valcyte is well tolerated and he wants to give it a try. I'm not sure what to do with this. I thought there was supposed to be some sort of indication of viral infection, other than routine cfs symptoms.

 

[SOC]

Re: SickofCfs:cheers and virtual happy dance:

:victory::victory::victory:

Teaching robotics! That is cool!

:victory::victory::victory:
[happy dance with L'Engle]

I think the class will be lots of fun.

 

[SOC]

Hi Sickofcfs. Great news! It's so nice when one of us gets better.

A doctor recently offered me Valcyte, without even ordering any tests for infection. All he wants to see is my liver test to see if I can handle the medication. He said Valcyte is well tolerated and he wants to give it a try. I'm not sure what to do with this. I thought there was supposed to be some sort of indication of viral infection, other than routine cfs symptoms.

Yeah, it's kinda tricky.... There's no good routine test your doctor can order to detect an active HHV-6 infection. See the HHV-6 Foundation http://www.hhv-6foundation.org/

There's also the possibility that a PWC's immune system is not producing antibodies (or so I've heard).

I think some infectious disease docs are taking the "if it walks like a duck, and quacks like a duck..." position. If you have all the symptoms of an HHV-6 or CMV infection, you probably have one, even if our tests aren't good enough to detect it. :Retro smile:

I guess if my quality of life wasn't too bad, I might wait on the Valcyte.... okay, I did wait a couple of years. I wish now I hadn't, but these things are easy in hindsight.

I'd also want careful monitoring for side effects -- Dr Lerner does a lot of tests every 6 weeks.

And you have to be prepared for the "herx-like" reaction you can get from Valcyte. Mine wasn't pleasant, but not awful. My daughter who wasn't as sick hasn't had any side effects yet.

I wish there was an easy answer, but there isn't.

All I can say is I'm really glad we're taking Valcyte. It's working for us.

 

[SOC]

Two more weeks and still improving

Almost every day I'm astonished at how much more I can do than I could do 3 months ago. I'm still very limited, but I keep very carefully stretching my limits. Small things that were too much the previous week are sometimes possible the next. Each little thing feels huge to me after being bedbound most of last fall and housebound otherwise for the past couple of years.

Yesterday I tutored math for an hour, did paperwork for the robotics class for a couple of hours, and taught robotics class away from home for two hours. In class I got up and down off the floor at least a half dozen times in the 2 hours, interacted with a bunch of 7-12yo kids (no mean feat for a PWC) and climbed a flight of stairs. I wouldn't have been able to do that 3 months ago and it would have put me in a months-long flare if I'd tried. I was tired yesterday evening, but not exhausted. This morning, I'm.....fine. No after effects. I'm stunned, to tell you the truth.

To keep things in perspective, I have a very talented assistant teacher who also drives me to and from class and carries things. The kids do all the set up and clean up, so I don't have that physical effort. I'm not capable of doing this all on my own, yet. :Retro smile: But to be doing it, at all, is ...amazing.

I might say that I can feel improvement every day, but it's probably fairer to say that I have noticeable improvement every week. Some things I couldn't do easily last week, I can do this week. Wow.

If I was taking Valcyte and expecting to be back to normal in 6 months, I'd have been disappointed. At 6 months I was slightly worse than when I started. After that I started to improve relatively rapidly.

I was expecting this degree of improvement after a year or so and hopefully more over the next several years, so I'm extremely pleased, okay, to be honest I'm excited to have this much more functionality with promise of more soon.

I take Valcyte 1350mg daily, targetted transfer factor for HHV-6 (small dose), B-12 Extreme (lots
of B-12), NAC, and a multivitamin good for PWCs (MVM-A from Dr Pall's protocol). That combo seems to be working the best for me.

My feeling about taking Valcyte -- cold dead hands, my friends, cold dead hands.

ETA: Again, for perspective -- I am very, very careful to get lots of rest and not overdo in the general way. I don't think I would be doing this well if I weren't giving my body every opportunity to heal. Rest is key, IMO.

 

[firefly]

Amazing. Thank you for posting all this good news. Happy for you.

 

[SOC]

Amazing. Thank you for posting all this good news. Happy for you.

Thanks, firefly! It is amazing. I hope it continues. :Retro smile:

 

[*GG*]

Is Valcyte good for RetroViruses?

GG

 

[SOC]

Is Valcyte good for RetroViruses?

GG

Not that I've heard of. Since herpesviruses and retroviruses don't replicate the same way, and Valcyte inhibits herpesvirus replication, I don't think Valcyte could do much for retroviruses, but I really don't know.

OTOH, if the Valcyte knocks down secondary herpesvirus infections, perhaps the immune system has a better chance of dealing with the retrovirus? Weren't antivirals an early treatment for HIV patients in the early days for that reason?

Sorry I can't be more help.

 

[Becky]

I am so doing a HAPPY DANCE for you.

I have considered going back to testing for EBV, HHV again since I have taken such a nose dive lately. And asking for valcyte from my PCP. He's great at working with my suggestions. But just wasn't sure if there would be enough of an improvement to do so.

You've encourage me to redo those tests.

It's just me in our family who is sick so to hear your daughter is improving and off to college is very happy news.

Any improvement is cause for celebration. If I had balloons I would post them here !

 

[kat0465]

sickofsickness,
i've been keeping up with your AV trial. and wow, your doing really well my question is did you find before the av's that your heart bothered you?
my ebv has been thru the roof, and dr has mentioned av's. surely if your titers are high it has a tendency to mess with your heart, not to mention everything else.

the heart thing is probably my most disturbing symptom at the moment, so in 6 weeks ill probably start valycyte. Hoping i get some good results. your expierence has Made me really want to try them now. thanks for keeping us in the loop on how your doing. we learn so much from each other!

Kat

 

[SOC]

I am so doing a HAPPY DANCE for you.

I have considered going back to testing for EBV, HHV again since I have taken such a nose dive lately. And asking for valcyte from my PCP. He's great at working with my suggestions. But just wasn't sure if there would be enough of an improvement to do so.

You've encourage me to redo those tests.

It's just me in our family who is sick so to hear your daughter is improving and off to college is very happy news.

Any improvement is cause for celebration. If I had balloons I would post them here !

Hi Becky!
It's probably worth redoing the tests when you feel lousy. The real problem with PCPs diagnosing based on your lab tests is that the lab often reports, along with your high titre, that many healthy people have high titres, so many PCPs seem to translate that as "healthy people can have high titres, and you're just another one of them".

You may need to point out that you're NOT healthy, so the high titre could very well mean you've got an active infection. If it walks like a duck, and quacks like a duck.... Also, a high titre could be normal for a kid who had the original infection within the last 10 years -- it's less likely in an adult who probably had the original infection 20+ years ago.

Add to that the fact that HHV-6 tests are notoriously unreliable and you could be told you don't have an active herpesvirus infection when, in fact, you do. **sigh**

If you do get your PCP to prescribe Valcyte, make sure he monitors properly. I think he'd want to keep an eye on kidney function and lymphocyte counts at the very least. No doubt he can look that up somewhere. :Retro smile:

Good luck!

 

[SOC]

sickofsickness,
i've been keeping up with your AV trial. and wow, your doing really well my question is did you find before the av's that your heart bothered you?
my ebv has been thru the roof, and dr has mentioned av's. surely if your titers are high it has a tendency to mess with your heart, not to mention everything else.

the heart thing is probably my most disturbing symptom at the moment, so in 6 weeks ill probably start valycyte. Hoping i get some good results. your expierence has Made me really want to try them now. thanks for keeping us in the loop on how your doing. we learn so much from each other!

Kat

I can't say I remember my heart bothering me. :Retro smile: As I understand it, Dr Lerner believes that a cardiac infection with a herpesvirus is the cause of many of our ME/CFS symptoms. He does a 24-hr Holter monitor test of all new patients.

If you have EBV, but not CMV or HHV-6, Dr Lerner would use Valtrex, not Valcyte. Valtrex is much easier to tolerate and is as good or better for EBV than Valcyte. If, on the other hand, your doc thinks you may have CMV or HHV-6, Valtrex may not do the trick.

Valtrex is way cheaper than Valcyte, too, and is available as a generic.

 

[SOC]

Another month (8+ months on Valcyte) and still going strong!

We had a minor setback after our flu shots this year. I might not have noticed my symptoms if my daughter hadn't had significantly more problems. I was a little more fatigued, couldn't stand quite as long, napped some in the afternoon -- nothing big. My daughter had big problems with her dysautonomia. She was having to leave class in order to lay down (on the restroom floor, yuck!). It was that or pass out or vomit. Poor kid.

Dr L doubled her Florinef and potassium and prescribed compression socks. After about a week she was doing fine again.

Once past the flu shot effect, I just kept getting better. My cognitive function is vastly improved in the past month. I feel sharp again. I'm probably not as sharp as I was, lol, but I'm SO much better than I've been in years, that it feels amazing.

I've been working 12-14 hours per week, tutoring math and teaching robotics. The last couple of weeks I've been doing some class prep and business meetings, too.

Today I took it slow in the morning, but tutored an hour, was out and about for 4 hours straight in business meetings (including some walking), and tutored another hour. I worked 6 hours straight, no nap, no supine resting and I still feel fine, not fatigued, not foggy or slow -- nothing.

Barring the odd minor setback, every week gets better. This is amazing.

OTOH, I'm unfoggy enough now that I actually thought about the cost of all the pills I was putting in my daughter's weekly pill case for her to take to the dorm. I knew this stuff is all expensive, but for the first time I realized that her pill case held about $1000 worth of meds and supplements. For ONE WEEK. That's just her. So our meds and supplements are worth about $8000 per month -- that's approaching $100,000 per year. Thank goodness we have good health insurance. Still, it's not easy to afford all this. It is SO wrong that many people can't afford treatment. PWCs have enough trouble even getting people to recognize that we're ill. Many of us couldn't afford treatment if we could get it.

 

[nventor]

Good morning sickofcfs,
I'm also taking Valcyte for HHV-6, CMV, I'm also positive for Lyme and EBV. I'm currently taking 1800Mg. daily for three weeks, then maybe a maintenance dose of 900Mg.

How long do you plan on continuing to take Valcyte?

Regards,
Roger

 

[SOC]

Good morning sickofcfs,
I'm also taking Valcyte for HHV-6, CMV, I'm also positive for Lyme and EBV. I'm currently taking 1800Mg. daily for three weeks, then maybe a maintenance dose of 900Mg.

How long do you plan on continuing to take Valcyte?

Regards,
Roger

The plan is for my daughter to take Valcyte for "about a year". She was not as sick as I was. For me we're on a "see what happens" plan. I expect to be on it 2-3 years, but it will depend on how long I keep improving. It might be only 1 year. We'll wait and see.

 

[AliceZ]

Sickofcfs-
Thank you for posting your story and describing your progress, as well as how long it took you to get to where you are at. I look forward to reading more of your updates.

 

[SOC]

Back from latest appt with Dr Lerner....

My daughter and I are both doing very well. My daughter has gone from a 5 to a 7 on Dr Lerner's scale in the past 9 months on Valcyte. I've gone from a 3 to a 5. That's huge. In my experience, a 3 is like having no life. A 5 is more like, oh, a quiet retirement. I don't do much physical activity, but I function, which is awfully nice.

In January, my daughter was struggling through college and collapsing in exhaustion at the end of her day. Now she's very successful in college and functioning normally, if quietly -- no parties, no late nights, no athletics.

We are thrilled. After 6 years of ups and downs and a generally downward trend, a steady uphill path is wonderful. I'm still pinching myself, to tell the truth. A year ago I was saying if I could be even reasonably functional, I would be happy. Well, I'm reasonably functional and I am,indeed, happy. But I'm even more happy to see that there's every possibility of even more improvement.

The cost of Valcyte treatment for 2 people is horrifying. But it's worth it, even if it bankrupts us.

 

[AliceZ]

Sickofcfs-

Thank you for the update. It is very inspiring encourage me to stay on track, as my daughter and I are in the midst of that initial physical decline, 9 weeks in, and it's rough.

Could you estimate how much you dropped on Dr. Lerner's scale from that initial "3" before you bottomed out? Was it less than 1 point? And about how long were you at the bottom before you started moving back up to the initial level?

 

[nventor]

Alice,
I said I would keep you posted on my Valcyte treatment and so today I cut back to 900mg. a couple of days early. I was beginning to feel really fatigued and felt it may be from the Valcyte. One more comment, since no one knows for sure what causes CFS, if it is a retrovirus like XMRV or others, then would Valcyte be completely ineffective in their treatment. Maybe there is a happy medium, lower dosages for active or prophylactic use against other well known viruses that may be the cause? Just rambling, others here have more knowledge.

Regards,

Roger