Re: Valcyte

[Guest guest]

so it sounds like have to have blood work done regularly?

<<< the toxicity of Valcyte, which is metabolized to ganciclovir,

includes low blood cell counts (granulocytopenia (27%), anemia (26%),

and thrombocytopenia (6%)) as well as diarrhea (41%), nausea (30%),

vomiting (21%), abdominal pain (15%), fever (31%), headache (22%),

insomnia (16%), peripheral neuropathy (9%), paresthesia (8%) and retinal

detachment (15%). In animal studies, ganciclovir was carcinogenic,

teratogenic and caused aspermatogenesis >>>

~~~~~~~~~~~~~~~~~~~~~~~~~

" Would they have found nothing, unless nothing was what they wanted to

find? " - Agent Dales, X-Files

@}{~{<<~~~~~~~~~~~~~~~~~~~~

@}{~{<<~~~~~~~~~~~~~~~~~~~~

debbie s. - dlsherman@...

[Guest guest]

> Dr. B started me at two pills a day. I just started it today and

I have

> experience no side effects (I'm cured, well maybe not -- yet that

is). But I

> hope folks will keep each other posted about side effects and

benefits. Am I

> the only one on this group that is CMV+. Maybe I should get a

transplant so

> I can be consistent with the medical literature -- I could use and

extra arm

> (don't ask me what for, because I won't tell

I am definately not CMV+. The CMV test should be standard for anyone

expected of having CFS. OK, what would you use the other arm for?

Mike

[Guest guest]

,

I have tested + for active CMV many times over the years. I am very

interested in your treatment with Valcyte. I have state insurance so

have little hope of ever being able to tyr this drug at least until many

studies are done.

I am so curious how people get insurance coverage. I can't imagine

what it would cost with an existing chronic illness and if one did pay

for it and is currently on SSI of a meager income of $714 a month,would

there not be red alerts to the feds? Any info would be appreciated.

My best to all,

[Guest guest]

,

It's worth a try if your doc will cooperate to challenge your Medicaid

provider to cover it. I've had some success when my doc argues why a

particular drug is the only one that will work for the particular medical

problem and that the other drugs won't. I'm sure it varies between

states. In fact, in my state there is variability betweeen HMOs which

Medicaid here (PA) is divided into. My previous Medicaid HMO was

horrible about allowing coverage for " nonformularly drugs. " They were

rotten in other ways to. I did a little research and switched. I'm not

saying they'll cover everything, but there is a chance. Medicaid is my

only prescription drug insurance.

Good luck.

Judith W-

On Sat, 16 Jun 2001 17:52:21 -0700 (PDT) karenchambers@... writes:

,

I have tested + for active CMV many times over the years. I am very

interested in your treatment with Valcyte. I have state insurance so

have little hope of ever being able to tyr this drug at least until many

studies are done.

I am so curious how people get insurance coverage. I can't imagine

what it would cost with an existing chronic illness and if one did pay

for it and is currently on SSI of a meager income of $714 a month,would

there not be red alerts to the feds? Any info would be appreciated.

My best to all,

[Guest guest]

>

> Please be a little more specific regarding when Valcyte started helping.

>

> thanks

>

> Steve

hi steve - i noticed a difference the first week i was on it. and i did better

with even just the one 560 a day i was still taking then - which is why i'm so

anxious to try it with the full dose of 560. i'm also curious to have another

EBV panel done, too. i'm thinking that must be what the valcyte's hitting, but

dunno....

my 15yr old's been on three a day of the 560's for two years now. we're just

starting to experiment with her - to see if she can take two one day, three the

next, two, etc. and not notice a difference.

hmm this is going to post with my address - dunno if it'll work since i'm

subbed on the webtv address?

[Guest guest]

P.S. i've also occasionally forgotten my am or pm valcyte. at about 8hrs past

the missed dose, i feel it. if i don't remember the missed dose soon enough to

take it, it takes me a couple days to get back where i was :-\

[Guest guest]

Thanks for asking these questions. I also would like to know these

things. My doctor just prescribed Valtrex for me, but she is very

hesitant to prescribe Valcyte which has a much greater risk factor -

unless she sees clear test results indicating viruses are a part of my

illness.

Part of MY situation is that we are not sure I am still sick with cfs

or Lyme disease. I just have this danged pressure headache all the

time. I think I wrote it seems to be responding to lots of coffee. Go

figure.

a Carnes

>

> Does anyone know the exact values you need to have to get Dr.

MOntoya

> or Dr. Lerner to treat you? Also, does a regular PCR test determine

> it, or does one have to go to a special lab? I have an appointment

to

> go to Dr. Lerner in June but want to know if I'm eligible for the

> treatment first. When I asked him if we could find that out he said

> that " All tests are done here. "

>

> Dr. Montoya also agreed to treat me and would work with my insurance

> better.

> I have been poring thru all kinds of material to find these values

and

> have not been able to do so. Thanks, Jody

>

[Guest guest]

a,

Have you undergone the " tilt table test " for hypotension?

Bob

, Ch.E.

******************

pjeanneus wrote:

> Thanks for asking these questions. I also would like to know these

> things. My doctor just prescribed Valtrex for me, but she is very

> hesitant to prescribe Valcyte which has a much greater risk factor -

> unless she sees clear test results indicating viruses are a part of my

> illness.

>

> Part of MY situation is that we are not sure I am still sick with cfs

> or Lyme disease. I just have this danged pressure headache all the

> time. I think I wrote it seems to be responding to lots of coffee. Go

> figure.

>

> a Carnes

[Guest guest]

Yes, in 1996. I used to eat 3 teaspoons of salt a day. As I took

Zithromax for years all my symptoms improved. Not sure I have NMH

anymore.

a

>

> a,

>

> Have you undergone the " tilt table test " for hypotension?

>

> Bob

> , Ch.E.

> ******************

> pjeanneus wrote:

> > Thanks for asking these questions. I also would like to know

these

> > things. My doctor just prescribed Valtrex for me, but she is very

> > hesitant to prescribe Valcyte which has a much greater risk

factor -

> > unless she sees clear test results indicating viruses are a part

of my

> > illness.

> >

> > Part of MY situation is that we are not sure I am still sick with

cfs

> > or Lyme disease. I just have this danged pressure headache all

the

> > time. I think I wrote it seems to be responding to lots of

coffee. Go

> > figure.

> >

> > a Carnes

>

>

>

[Guest guest]

http://www.vicd.info/clinicaltrial.html

there are links at the top, look at 'testing' as well as this page. I

think the type of onset is more important than specific titres, not

that titres shouldn't be looked at, but rather the responders have

all been sudden onset and gradual onsets haven't seemed to respond,

as well it is noted that " If your result is in the top quartile you

are more likely to have an infection, but there is not way to know

for certain. Patients who are immunosuppressed and have a low IgG may

show up with low antibody levels in spite of active disease. "

>

> Does anyone know the exact values you need to have to get Dr.

MOntoya

> or Dr. Lerner to treat you? Also, does a regular PCR test

determine

> it, or does one have to go to a special lab? I have an appointment

to

> go to Dr. Lerner in June but want to know if I'm eligible for the

> treatment first. When I asked him if we could find that out he

said

> that " All tests are done here. "

>

> Dr. Montoya also agreed to treat me and would work with my

insurance

> better.

> I have been poring thru all kinds of material to find these values

and

> have not been able to do so. Thanks, Jody

>

[Guest guest]

>

> Would this help someone who has been sick for over 20 years? Thank

you!

> Sue

>

yes. if your problem is viral it will help

[Guest guest]

I think the person who said they didn't experience the initial adverse

reactions ultimately didn't respond to the treatment, ie was a non-

responder. In Dr. Montoya's initial study, none(3) of the people who

ended up being non-responders experienced the initial adverse

reactions, and all(9) of the responders did. If anyone hasn't read the

paper, I'll email it to anyone who wants to contact me off-list.

From the article-

" As noted above, all of the responding patients reported some degree of

worsening of their condition during their inital month of treatment.

This worsening resembled a Jarisch- Herxheimer-like reaction and

included several days of myalgias, chills, headache, worsening of

the " brain fog " and fatigue, and skin rash in some patients. The

pathology of this response is unclear, but may be mediated by an immune

response to transiently increased circulating viral antigen. "

>

> I find this thread very informative. What hasn't been said, IMO, is

> that nobody has experienced any of the possible negative side effects

> that initially had a lot of members worried, including me.

> Someone said that after 3 weeks or so that there was no effect-that is

> hardly what I would consider potentially disasterous side effects

> of V.

>

> Mike C

>

[Guest guest]

J-I wasn't referring to the short term adverse reactions. When

Valgancyclovir (V) was first brought up as a treatment option on this

list, there were some members who said they would never try V

due to the info. that they read for long term negatives from

drugs.com or one of the other presciption medication sites. V has

been reported to have some long term adverse effects, and it made

many of us concerned. See below:

Seek medical attention right away if any of these SEVERE side effects

occur:

Severe allergic reactions (rash; hives; itching; difficulty

breathing; tightness in the chest; swelling of the mouth, face, lips,

or tongue); chills; confusion; cough; decreased urination;

depression; fever; hallucinations; loss of coordination; numbness or

tingling of the skin, hands, or feet; seizures; sore throat; swelling

of the legs; tremors; unsteady movements; unusual bruising or

bleeding; unusual tiredness or weakness; vision changes.

Mike C

> >

> > I find this thread very informative. What hasn't been said, IMO,

is

> > that nobody has experienced any of the possible negative side

effects

> > that initially had a lot of members worried, including me.

> > Someone said that after 3 weeks or so that there was no effect-

that is

> > hardly what I would consider potentially disasterous side effects

> > of V.

> >

> > Mike C

> >

>

[Guest guest]

I talked to him a year or so ago about gancyclovir and he definitely

does *not* use it. He feels it's much too dangerous of a drug for

children because the side effects can apparently be pretty bad.

Cheryl

~ http://www.gryffins-tail.blogspot.com ~

On Apr 23, 2009, at 5:24 PM, Robyn wrote:

>

>

> Does anyone know if Dr. G uses this drug (valganciclovir ) for

> patients who have elevated HHV6 titers and EBV? My HHV6 numbers

> were steadily coming down since starting antiviral treatment in

> November and now they're back up again. Interestingly enough, I

> knew before the labs came back. The fatigue, headaches, body aches,

> etc., started coming back.

>

> Just curious if anyone had undergone treatment with this antiviral.

>

> Robyn

>

>

>

[Guest guest]

Thanks!

>

> >

> >

> > Does anyone know if Dr. G uses this drug

> (valganciclovir ) for

> > patients who have elevated HHV6 titers and EBV? My

> HHV6 numbers

> > were steadily coming down since starting antiviral

> treatment in

> > November and now they're back up again.

> Interestingly enough, I

> > knew before the labs came back. The fatigue,

> headaches, body aches,

> > etc., started coming back.

> >

> > Just curious if anyone had undergone treatment with

> this antiviral.

> >

> > Robyn

> >

> >

> >

>

>

>

>

[Guest guest]

Lois I'm sorry but I have never tried it. Good luck finding what you need to

know.

________________________________

From: Lois Dannunzio <Loispix@...>

" " < >

Sent: Thu, January 7, 2010 8:04:38 PM

Subject: Valcyte

 

(Moderator: There are several people who have used Valcyte so hopefully they

will jump in but I would like to encourage you to use the search function as the

list is rich in information from past posts. Also, you might look in the Files

section and possibly the Links section for info.}

I am new to this list. I have had CFS for 10 years. My new doctor wants me

to try Valcyte. I would like to hear if anyone has tried it and how they

faired. Bad side effects? No effects? Improvement in fatigue? After how

many months on Valcyte?

Thanks for any information.

Lois d'Annunzio

[Guest guest]

hi lois. i am on my 3rd year of valcyte but am still sick as a dog. i started to

get better once but then relapsed again. i now hope i have XMRV and can treat

that or i'm sunk!

there are a few valcye success stories...check prohealth.com and hhv6foundation

boards.

sue

________________________________

From: Lois Dannunzio <Loispix@...>

" " < >

Sent: Thu, January 7, 2010 8:04:38 PM

Subject: Valcyte

 

(Moderator: There are several people who have used Valcyte so hopefully they

will jump in but I would like to encourage you to use the search function as the

list is rich in information from past posts. Also, you might look in the Files

section and possibly the Links section for info..}

I am new to this list. I have had CFS for 10 years. My new doctor wants me

to try Valcyte. I would like to hear if anyone has tried it and how they

faired. Bad side effects? No effects? Improvement in fatigue? After how

many months on Valcyte?

Thanks for any information.

Lois d'Annunzio

__________________________________________________________________

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