Valcyte (plus) Update

[undcvr]

I have always heard that Lerner was against Valcyte, this isn't true ? How long more does he expect that the both of you need to be on Valcyte ? 15 months is a long time ...

Can you elaborate out what the symptoms were like when you went through those 4 months of IRIS ? I feel like I am going through them now on the ARVs.

 

[SOC]

I have always heard that Lerner was against Valcyte, this isn't true ? How long more does he expect that the both of you need to be on Valcyte ? 15 months is a long time ...

Can you elaborate out what the symptoms were like when you went through those 4 months of IRIS ? I feel like I am going through them now on the ARVs.

Can you chat? We can set up a private chat room.

 

[SOC]

A year since my first post to this thread --- my daughter's story

The improvement in my daughter has been remarkable -- night and day. When she started Valcyte 18mo ago, we didn't think she could make it through the semester, even with a reduced course load. She was a 5 (or possibly a bit less) on Dr Lerner's scale when she started, which means she was one sick puppy. Read the first posts on the thread for more details.

Today she feels perfectly normal, although she does not engage in heavy exercise, yet. She bikes a bit, knocks a tennis ball around, walks as much as she wants -- that sort of thing. She has worked half-days all summer, either on her project in the Fluid Dynamics Lab (lots of mental energy consumed) or at a day camp for international students (lots of emotional and physical energy consumed). She still takes a naps most days because she wants to be as healthy and rested as possible when the semester starts, but she doesn't have to nap daily.

She has had no relapses or flares in.... gosh.... a long time..... 6 months or more.

Her heat intolerance, and OI-type things have completely cleared up. She is off the Flourinef and K-Dur. We have been having a horrible, long heat wave here -- in the 90's and 100's and extremely high humidity. Even so, she's been outside with the kids at camp while they play tennis and golf and she has no problems. She gets hot and sweaty, yes, but NO OI-type symptoms. Last summer she was nearly passing out in much milder heat conditions. Amazing.

She will be taking a full engineering courseload for junior starting in a few more weeks. Although we're all feeling cautious, or maybe gun-shy is a better description, every indication is that she'll do just fine. :victory:

She is still on the Valcyte, but we expect her to be off it in another month or so. She has been taking Valtrex (generic) also, for a couple of months and we expect that to continue. I believe the idea is that it should be able to keep the herpesvirus infections suppressed now that they're no longer active.

My best guess about her illness story is this --
Something viral hit us both suddenly and hard in August 2004. Whatever it was had a distinct negative impact on our immune systems (I'm guessing), so that over the next 5 years her flares/relapses increased in frequency and duration, although otherwise she functioned relatively normally. These events were probably activations of latent herpesvirus infections that were then eventually suppressed again by her immune system.

In Jan 2009 she was given a live-virus chicken pox vaccine (a herpesvirus) in preparation for college. She crashed, burned, and didn't recover. I don't blame the vaccine, exactly. I think the live herpesvirus taxed her weak immune system and activated other latent herpesviruses so that she then had raging, active herpesvirus infections. Poor kid was a train wreck -- trying to function as a college student, but feeling like crap. We all know that story....

In Jan 2010 she saw Dr Lerner for the first time. He diagnosed an active HHV-6 infection and started her on Valcyte. It's been all uphill for her ever since. She had no bad rxns to Valcyte other than her liver enzymes increased briefly in Nov when she was careless about her fluids and silymarin.

She's had no immune function tests, but I suspect that whatever is affecting her immune system -- which is the root of the problem, IMO -- is still there. I hope that by staying on the Valtrex, she will be able to keep latent herpesvirus infections from reactivating again.

She had a lot of neurological and energy production/transport problems which I suspect were primarily the result of HHV-6 infection of the CNS and heart.

I won't say she's 100%, but she's "recovered" in the way many of Cheney's pediatric patients "recovered". Maybe I'd call it remission. It looks like she can lead a normal life, but she may have to be careful not to overtax her body because whatever is at the root of all this is still there.

For the parent of a child who has had ME for 7 years, this is.... indescribable.

 

[SOC]

A year since my first post to this thread --- my story

I, too, am greatly improved on Valcyte, but I'm not nearly as functional as my daughter.

I can only speculate on the reasons for that.
(1) I'm older, of course. That's not a plus with this illness.
(2) I was sicker from the beginning. Possibly because of (1)
(3) I "pushed through" all the symptoms as they got worse. We made our daughter cut back her schedule, rest, take supps when her symptoms started getting worse. (We'd learned a lot by then)
(4) so, I was much sicker by the time I started Valcyte.

Today I feel massively better than I did 18mo ago when I started Valcyte. I've had a LOT of cognitive improvement. I can read books now, which I couldn't for a while because I couldn't maintain visual or mental focus, but I still can't follow content-dense technical papers. I'm certainly not walking (okay, sitting) around in a fog anymore.

In the 18mo since I've been on Valcyte, I've gone from bedbound to housebound. I did do some out-of-home teaching, which while it didn't cause massive relapses, did essentially slow down my improvement to almost nothing. In other words, I could teach a few hours out of home, but I couldn't do it and get better. This is my concern with some of the AT-exercise activity ideas, btw. Yes, I could do more, but if rest is helping me recover (or fight infections, or whatever), should I do more? Dr Lerner says no, and my experience is that when I follow his advice and rest A LOT, a get better faster than if I do what I can while staying under my AT. Go figure.

I've improved from a 3 (or a bit lower) to a solid 5 on Dr Lerner's scale, which is huge. For me, it's the difference between having no life and having some life. I can visit with my friends and even go out to lunch if I limit walking. Immediately before Valcyte treatment, and hour visit with a friend at my home exhausted me.

I tutor 2-3 hours on weekdays, so I have human contact. I can go out shopping or to dinner with my family (with wheelchair) and not have to go to bed as soon as we get home. If I had a power chair (I'm working on that), I could do more out-of-home things without sending myself into PENE. I can read. I can visit my friends at their houses if someone drives me and I can sit with my feet up.

I have a life. I'm not stuck in bed or recliner watching my life pass me by. I am in a recliner most of the day, but I can sit at a desk or table for a number of hours each day. I'm connected to the world and I can get out of the house (with assistance) and do things. I feel good (most of the time). I'm not dead-woman-walking. Okay, not even walking... I was more like dead-woman-propped-in-a-corner.

I'm still on Valcyte. I've also been on Valtrex for a couple of months.

I have some guesses about my situation and where I might go from here.

I wonder if my immune system is functioning much more poorly than my daughter's. I had an IRIS-type rxn on Valcyte that she didn't have (see earlier posts) which makes me wonder if my immune system was almost shut down, while hers was still functioning, although poorly.

AVs stop the virus from replicating (or slow it down), but they don't kill the viruses. If my immune system is only barely able to kill the virus, then it's going to take me a long, long time to clear it. My daughter's immune system may be doing a better job of killing the virus while the AVs are stopping it from replicating.

It's on my list for my next appt with Dr Lerner to ask about immunomodulators. I haven't heard that he uses any of the meds/supps that increase NK function, but who knows. He did not do any immune function tests for us, I do know that.

I'm very, very, very glad we got Valcyte. It's made a HUGE difference in our lives. I'm kicking myself for not trying it years sooner when I knew it was available.

The downside? Valcyte is extremely expensive and requires very careful monitoring. The cost of the med itself, even with insurance, plus the cost of the testing and doctor visits necessary to monitor for serious side effects is unbelievable. To do it for 2 people is next to impossible. We are broke. Flat broke. But for us it was worth it. I would have paid all that money just to get my daughter to where she is after 18mo.

Is Valcyte a cure? I would say not. I think there's still some underlying reason that explains why our immune systems are not keeping these normally latent infection suppressed. Until we deal with that, we're not cured.

However, if treating the secondary infections clears up most, or even many, of the symptoms, we are much better off than we would be otherwise. And that is something we can do today, even if we don't know the root cause of our illness.

 

[eric_s]

Wow, Sickofcfs, that's amazing. Dr. Bieger has suggested Valtrex to me as well, plus some other medications. So far i have not taken any of them, i thought i might wait until we know more about XMRV, because that might change treatment approaches. Also the tests for reactivated EBV infection came back negative in my case, i was never tested for HHV-6 so far though.

I think i will try to find out if it's possible to send results to Dr. Lerner, so that he could look at them without me having to come to the USA, which would be more or less impossible.

 

[heapsreal]

Sounds great sickof, good your getting your life back slowly and hope you keep improving. Yhanks also for your updates too.

cheers!!!

 

[SOC]

It is indeed amazing, eric.

I suspect Dr Lerner has more fundamental understanding of herpesvirus infections in ME patients than anyone else in the world. He's not a researcher; he's an infectious diseases specialist with 25 years treating ME patients with antivirals. He's probably seen it all. He has published some of his clinical info, but took some flack from patients online because his publications were clinical reports and retrospective data analysis rather than hard, blinded research. So his knowledge probably doesn't get as much exposure at it might. I think there are important issues like dosage and treatment length required to get into affected CNS and cardiac tissues that are not always addressed by less knowledgeable doctors. Not all meds can get through the brain-blood barrier, for example. It's not as simple has just taking some AVs.

Here's my thinking about XMRV and herpesvirus infections:

IF XMRV is the root cause of our illness, it is likely that it is affecting our immune systems. Looking at HIV treatment, especially prior to good ARVs, I could see that very many were treated for secondary infections, especially reactivated herpesvirus infections. Additionally, HIV patients who had already developed reactivated herpesvirus infections were often treated for those secondary infections before or along with ARV therapy.

So, if the damage to our immune systems is causing latent viruses to reactivate (as happens with HIV), it only makes sense to treat those secondary infections, even if we don't have treatment for the root cause. We may be able to substantially improve quality of life and reduce damage to critical systems like CNS and cardiac systems.

There are other theories, of course, and mine is just that of a reasonably intelligent patient, not a biological scientist.

 

[KC22]

sick of cfs - You pretty much described my story. I started at a 2, and have worked up to a 5. I can do a few things a week and my crashes are not as long or as hard. I have been on valcyte for 3 1/2 years. My titers are still high, so he won't pull me off the meds. I am in my fifties, so I think there has been more damage done. It seems as though the younger people who find valcyte and valtrex early get much more improvement in less time.

eric - I tried to have Dr. Lerner work with my doctor. He called him, but he wants to see us. We have to see every 6-8 weeks. It would be nice if he would read your labs and send his advice. Good Luck!!

 

[aquariusgirl]

sickofcfs....i think u shld name the first doc. I saw him too....total waste of $1,000 +...and I drove to Charlotte from the MIdwest to see him.

 

[SOC]

sick of cfs - You pretty much described my story. I started at a 2, and have worked up to a 5. I can do a few things a week and my crashes are not as long or as hard. I have been on valcyte for 3 1/2 years. My titers are still high, so he won't pull me off the meds. I am in my fifties, so I think there has been more damage done. It seems as though the younger people who find valcyte and valtrex early get much more improvement in less time.

eric - I tried to have Dr. Lerner work with my doctor. He called him, but he wants to see us. We have to see every 6-8 weeks. It would be nice if he would read your labs and send his advice. Good Luck!!

Congratulations on your improvements, KC22! It's nice to even be able to do a few things a week and to not crash so badly, isn't it? It's far from perfect, but it's a big positive.

Sadly, at our age, KC22, we may have irreparable damage. I'm hoping for the best, though. I agree that younger people who get early treatment seem to have the best outcome.

Yes, Dr Lerner wants to see patients in person regularly. We have to travel 7 hours (each way) every 6 weeks. This is important because Valcyte needs very careful monitoring to watch for extremely serious side effects. He trusts himself, not docs he doesn't know to do that monitoring. I understand and accept that, but it does make it hard sometimes.

Best of luck to those long-distance PWME who are trying to get Dr Lerner's help. Perhaps they can get some other ME specialists to work directly with Dr Lerner to use his knowledge and experience at other locations.

 

[SOC]

sickofcfs....i think u shld name the first doc. I saw him too....total waste of $1,000 +...and I drove to Charlotte from the MIdwest to see him.

I flew from the midwest to Charlotte and it was a tough trip. I think Dr Lapp is an excellent doc, and he did many excellent things for us. They did VOmax testing and AT-limited activity long before most other docs were doing it. Both were big positives for me. It is disappointing to me that he didn't catch the HHV-6 infection, but to be fair, HHV-6 testing is notoriously unreliable. By the time I saw Dr Lerner, my symptoms were much worse, and much more obvious than they were when I saw Dr Lapp.

For me the big message is that herpesvirus testing, especially HHV-6, is very unreliable. It's not clear that any of us really know if we have HHV-6 infections unless we treat it and see if we get better. Unfortunately, that means AVs with major potential side effects that few doctors are willing to take a chance on.

 

[eric_s]

I agree with what you say about XMRV and herpes virus infections, Sickofcfs. The thing is that in my case, Dr. Bieger said the elevated EBV titres i had some years back don't show anything relevant. Also the ones for CMV did not show anything. And as i've said HHV-6 has never been looked at, but he said the meds would work against this too, so it doesn't matter too much. He has a way to test for EBV reactivation, he tested EBV DNA (PCR), EBER mRNA, LMP1 mRNA and EBNA1 mRNA. They were negative for me. So, in my case, it seems only MxA was a sign for viral involvement. If a doctor told me i show signs of reactivated herpes virus infection(s), then i would see things differently.

Dr. Bieger works along the lines of Dr. Lerner and i think he is a good doctor, but i also think in the end Dr. Lerner is the original and there's probably nobody who knows Dr. Lerner's approach better than he himself... So it would be great to hear his opinion on my results. Maybe he has a different way than Dr. Bieger to diagnose reactivation and comes to a different conclusion at times.

eric - I tried to have Dr. Lerner work with my doctor. He called him, but he wants to see us. We have to see every 6-8 weeks. It would be nice if he would read your labs and send his advice. Good Luck!!

Thanks for the information, KC22.

 

[SOC]

I agree with what you say about XMRV and herpes virus infections, Sickofcfs. The thing is that in my case, Dr. Bieger said the elevated EBV titres i had some years back don't show anything relevant. Also the ones for CMV did not show anything. And as i've said HHV-6 has never been looked at, but he said the meds would work against this too, so it doesn't matter too much. He has a way to test for EBV reactivation, he tested EBV DNA (PCR), EBER mRNA, LMP1 mRNA and EBNA1 mRNA. They were negative for me. So, in my case, it seems only MxA was a sign for viral involvement. If a doctor told me i show signs of reactivated herpes virus infection(s), then i would see things differently.

Dr. Bieger works along the lines of Dr. Lerner and i think he is a good doctor, but i also think in the end Dr. Lerner is the original and there's probably nobody who knows Dr. Lerner's approach better than he himself... So it would be great to hear his opinion on my results. Maybe he has a different way than Dr. Bieger to diagnose reactivation and comes to a different conclusion at times.

Thanks for the information, KC22.

It's certainly possible that you, and many other PWME, don't have reactivated herpesvirus infections. It's known that the immune impaired are more likely to have them, but it's no certainty. Thank goodness.

You are so far away from Dr Lerner, eric, that he might be more willing to work with Dr Beiger to help you. KC22 and I are relatively close to Dr Lerner geographically so he prefers to see us in person so he can monitor more effectively. I don't see that that's possible for you, so he might consult.

Another thought: If the herpesvirus infections are intermittently reactivating, isn't it possible that testing at the right time might be important? That is, if one was tested in the midst of a big flare/relapse might not one see the early antigens the docs are looking for? Tests done when we're not feeling so bad might only show previous infection. Just a thought....

Also, Dr Beiger is a known ME doc, so Dr L might be more comfortable consulting with him than with a patient or an inexperienced doc. Just a thought.

Maybe he has a different way than Dr. Bieger to diagnose reactivation and comes to a different conclusion at times.

I think you are exactly right, eric. I really think it's worth trying to find a way to consult with Dr Lerner. It might not work, but it can't hurt to try.

 

[eric_s]

That's a good idea, i think i will certainly try to contact Dr. Lerner. I don't know yet how to do it exactly, because i also don't want to offend Dr. Bieger, he might think i don't trust his assessment. So i have to think about it first.

 

[SOC]

That's a good idea, i think i will certainly try to contact Dr. Lerner. I don't know yet how to do it exactly, because i also don't want to offend Dr. Bieger, he might think i don't trust his assessment. So i have to think about it first.

Oh, yeah.... I see your point. Well, it can't hurt to write to Dr Lerner. He is a wonderful human being and really cares about patients.

 

[aquariusgirl]

hi, can anyone give me some guidance on the cost of valcyte? what is the copay if one has a decent insurance?
Obviously, it depends on dosage, but any guidance would be helpful.

Also, any ideas how much longer Dr Lerner will be practicing?

thanks

 

[mojoey]

It depends on the insurance. Private is in most cases gonna be better than Medicare Part D. I have a good plan with Medicare Part D and it costs 6k a year because of the donut gap. Insanity.

 

[SOC]

Also, any ideas how much longer Dr Lerner will be practicing?

There's no predicting. I don't see any signs of retirement. He's is 80-something, I believe, so I wouldn't be waiting 20 yrs to see him.

 

[SOC]

hi, can anyone give me some guidance on the cost of valcyte? what is the copay if one has a decent insurance?
Obviously, it depends on dosage, but any guidance would be helpful.

Also, any ideas how much longer Dr Lerner will be practicing?

thanks

Don't forget the cost of lots of labs and doctor visits for careful monitoring. That adds up quickly, too.

 

[Grape Funk]

hi, can anyone give me some guidance on the cost of valcyte? what is the copay if one has a decent insurance?
Obviously, it depends on dosage, but any guidance would be helpful.

Also, any ideas how much longer Dr Lerner will be practicing?

thanks

Give your insurance company a call. With average insurance, mine is 340(brand name is 300 co pay first month) the first time round (no matter dosage of 450mg or 1800mg daily) and $40 monthly subsequently. Might have a problem with insurance after 3 months, which is the time allotted to CMV infection/transplants etc.