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Medical Forum / Diseases and Disorders / Hepatitis / September 2006

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Newbie: treatment side effects?

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Caesar - 17 Sep 2006 03:07 GMT
Ok, you've been diagnosed with Help C and the doctor wants to begin
the accepted method of treatment of Interferon, so what is one to
expect? Is the shot used in conjunction with something else and I have
read posts where people say they go "crazy" and all of that during
treatment, some must stop it and so on.

Would someone take the time to explain all of this to us newbies, both
who post and who are afraid to, so that we get a general idea of what
to expect and/or could happen, in detail?

I will be seeing the doctor in a few weeks, I hope. I would like to
know some of this so that I can ask the right questions and have some
knowledge before I see him again.

Thanks,
Caesar
Burke Gilman - 17 Sep 2006 04:04 GMT
> Ok, you've been diagnosed with Help C and the doctor wants to begin
> the accepted method of treatment of Interferon, so what is one to
[quoted text clipped - 12 lines]
> Thanks,
> Caesar

Standard of care today is subcutaneous injection of interferon once
weekly (pegylated interferon is good for a week) and oral
administration of ribavirin (pills) twice daily. Both of these powerful
antiviral drugs together comprise the intensive antiviral chemo now
used to treat chronic hepatitis-c (HCV) infection. Both drugs are
associated with numerous possible adverse events.

Some side effects are common to most HCV patients receiving Tx. Some
side effects are quite rare. Other side effects occur maybe half the
time. Fatigue is probably a universal experience, for example. Death is
extremely rare, for example. Clinical depression that requires
antidepressant medication is not unusual, for example.

Both interferon and ribavirin normally cause mental side effects and
both normally cause physical side effects. It took me a while to better
understand which drug was causing which side effect, but it doesn't
necessarily matter very much. The topography of the reactions can vary
a great deal from individual to individual, depending in large measure
on your genes -- it's a genetic roll of the dice as they say.

Chances for successful treatment strongly correlate with the particular
genotype of the virus you are infected with. Also, the treatment
duration and dosages ordered for you will depend a lot on the genotype.
Your medical history can also help predetermine what you might expect,
and to help you and your care-provider choose appropriate adjunct
therapy for dealing with side effects.

Bottom line, it's good to hear you are planning to go after this. I
believe its generally best to get started with Tx as soon as possible.
I recommend you do some Google searches on HCV keywords to learn more
as you approach your Dr. appointment. Others who post here will
probably chime in with more info for you.

Welcome to ash-c.  -bg
anonymousone - 17 Sep 2006 04:06 GMT
> Ok, you've been diagnosed with Help C and the doctor wants to begin
> the accepted method of treatment of Interferon, so what is one to
[quoted text clipped - 12 lines]
> Thanks,
> Caesar

Side effects can range from almost nothing to very severe.

You need to do a lot of reading. Here is a site that I like that can
answer  a lot of questions.

http://janis7hepc.com/
flifla - 18 Sep 2006 22:57 GMT
I am one of those people who always gets the "Possible Side Effects"
listed on the package. Long read here:

At the beginning of treatment, I was unable to perform the most basic
tasks. My first shot I came down with a terrible headache and feeling
of sadness and tiredness. I felt that just opening my mouth to talk was
itself a huge task. I felt just AWFUL. I needed help to do the most
basic of household tasks. I had a funny taste in my mouth. I sweated at
night and felt hot and cold. I became nauseuous. My body hurt all over,
in a weird way. I felt as if I had been exposed to Uranium!  As the
months went by, I was able to make do and got my energy back. Then new
sides started. Hair loss- big hair loss. Itching. Crying (anti
depressants- get on them now! before it starts!) Rage- get on something
like Ativan or else you could get into major fights- not kidding. Pale
pale skin. You will turn "blue-ish" and look 15 years older. You will
have aches and pains. My headache and backache have never gone away. I
simply got "used to it".
Extremely dry skin.
Your teeth might fall out. Not kidding. I have seen major teeth changes
since TX. Sleep with your mouth closed. Use Maalox as a mouthwash- the
chemical reaction helps the moister content? in your mouth.
I have been on treatment now for 6 months and my side effects have
changed. You will find that each month or so the complaints will range
from one thing to something new.
I now have horrible leg cramps, fungal issues on the skin (got an RX
called Alcortin, a cream) the fungus gave me sores on my scalp and
itchy-ness all over (nice, thinning hair with SORES) and my eyesight
has gotten blurry. Forgetfullness: you will forget what happened
yesterday, last night, or entire conversations. You might get lost
driving on a familiar road.

I have to say, I took temporary leave from work. I have since gotten
"better" and returned back to my same old job. I am debating as to
whether to get on disability again. The frequent Dr appointments you
have to show up for are a real drag, and sometimes your Dr might call
you to "come in rught away! Your white blood cell count is low and you
need a Neulasta shot!" try telling your employer you suddenly have to
leave. It's hard.
I HAVE read from some on treatment that they have little to no side
effects. I really don't know how this is possible! Not with what I am
going through, and the very nature of the medications. Good luck asn
STICK WITH IT. Although I have been through real hell here, I am
determined to go throught the whole year.

> Ok, you've been diagnosed with Help C and the doctor wants to begin
> the accepted method of treatment of Interferon, so what is one to
[quoted text clipped - 12 lines]
> Thanks,
> Caesar
BlownAway - 18 Sep 2006 23:46 GMT
I am on my 5th month of tx. I lost 65% of my hair and 12 lbs. l feel
leg and muscle pain more than ever. I started the first 2 weeks with
very mild effects.. I thought the whole treatment process was going to
be like placebo side effects. Then at week 10 or so I started to feel
the harsh reality of the treatments. I am gradually feeling better with
diet and mild excercise. On the 10th week I was tested and found
undetectable for that test. genotype 1a 10 million viral load.  .

Wish you the very best.

> I am one of those people who always gets the "Possible Side Effects"
> listed on the package. Long read here:
[quoted text clipped - 56 lines]
> > Thanks,
> > Caesar
elmoemerson@webtv.net - 19 Sep 2006 01:20 GMT
Great news, Bugsy!!
elmo
//////////
I am on my 5th month of tx. I lost 65% of my hair and 12 lbs. l feel leg
and muscle pain more than ever. I started the first 2 weeks with very
mild effects.. I thought the whole treatment process was going to be
like placebo side effects. Then at week 10 or so I started to feel the
harsh reality of the treatments. I am gradually feeling better with diet
and mild excercise. On the 10th week I was tested and found undetectable
for that test. genotype 1a 10 million viral load. .
Wish you the very best.
flifla wrote:
I am one of those people who always gets the "Possible Side Effects"
listed on the package. Long read here:
At the beginning of treatment, I was unable to perform the most basic
tasks. My first shot I came down with a terrible headache and feeling of
sadness and tiredness. I felt that just opening my mouth to talk was
itself a huge task. I felt just AWFUL. I needed help to do the most
basic of household tasks. I had a funny taste in my mouth. I sweated at
night and felt hot and cold. I became nauseuous. My body hurt all over,
in a weird way. I felt as if I had been exposed to Uranium! As the
months went by, I was able to make do and got my energy back. Then new
sides started. Hair loss- big hair loss. Itching. Crying (anti
depressants- get on them now! before it starts!) Rage- get on something
like Ativan or else you could get into major fights- not kidding. Pale
pale skin. You will turn "blue-ish" and look 15 years older. You will
have aches and pains. My headache and backache have never gone away. I
simply got "used to it".
Extremely dry skin.
Your teeth might fall out. Not kidding. I have seen major teeth changes
since TX. Sleep with your mouth closed. Use Maalox as a mouthwash- the
chemical reaction helps the moister content? in your mouth. I have been
on treatment now for 6 months and my side effects have changed. You will
find that each month or so the complaints will range from one thing to
something new.
I now have horrible leg cramps, fungal issues on the skin (got an RX
called Alcortin, a cream) the fungus gave me sores on my scalp and
itchy-ness all over (nice, thinning hair with SORES) and my eyesight has
gotten blurry. Forgetfullness: you will forget what happened yesterday,
last night, or entire conversations. You might get lost driving on a
familiar road.
I have to say, I took temporary leave from work. I have since gotten
"better" and returned back to my same old job. I am debating as to
whether to get on disability again. The frequent Dr appointments you
have to show up for are a real drag, and sometimes your Dr might call
you to "come in rught away! Your white blood cell count is low and you
need a Neulasta shot!" try telling your employer you suddenly have to
leave. It's hard.
I HAVE read from some on treatment that they have little to no side
effects. I really don't know how this is possible! Not with what I am
going through, and the very nature of the medications. Good luck asn
STICK WITH IT. Although I have been through real hell here, I am
determined to go throught the whole year.
Caesar wrote:
Ok, you've been diagnosed with Help C and the doctor wants to begin the
accepted method of treatment of Interferon, so what is one to expect? Is
the shot used in conjunction with something else and I have read posts
where people say they go "crazy" and all of that during treatment, some
must stop it and so on.
Would someone take the time to explain all of this to us newbies, both
who post and who are afraid to, so that we get a general idea of what to
expect and/or could happen, in detail?
I will be seeing the doctor in a few weeks, I hope. I would like to know
some of this so that I can ask the right questions and have some
knowledge before I see him again.
Thanks,
Caesar

http://community.webtv.net/elmoemerson/DocElmosHepFile

http://community.webtv.net/elmoemerson/TheFamilyAlbum
Caesar - 19 Sep 2006 01:40 GMT
Will the hair loss return after treatment?

Caesar
greyhackles - 19 Sep 2006 03:19 GMT
>Will the hair loss return after treatment?
>
>Caesar

I don't know if my case is prototypical or unique (well, I know it's not
"unique") but it's not like I actually lost hair follicles. Rather, the hair
shafts became so thin over time - and desiccated, no doubt - that the
"coverage" was not only reduced (due the thinness) they also broke easily.
Heck, a restless night on the pillow about 4 months into therapy could result
in dozens of helpless victim hairs. Not to mention what was left of my
naturally very curly hair went dead straight in the offing.

But...In a little more than two weeks, it'll be one full year since End of
Therapy for me. And all my hair is back to exactly where it was at the
beginning of my little adventure. That doesn't suck :-)

If you start at it early, there is a hair shampoo/treatment that can be
beneficial (and damned if I can remember the name right now). And switching to
a silk pillow case doesn't hurt. And avoiding obvious aggravating factors
(hair dryers, repeated washings, harsh shampoos) will all help reduce the
impact...

Cheers

/greyhackles
Waterspider - 23 Sep 2006 08:15 GMT
> Will the hair loss return after treatment?

No. The hair loss will END after treatment.
elmoemerson@webtv.net - 19 Sep 2006 01:18 GMT
Sounds par for the course, Flifla.  Your description of tx so far is
much the same as mine was.  Hang in there, the best is yet to come.
You've only got 5 months left, you're more than half-way thru.  
elmo
///////////
Re: Newbie: treatment side effects? Here are MINE  

Group: alt.support.hepatitis-c Date: Mon, Sep 18, 2006, 2:57pm (CDT-2)
From: kmakhl@yahoo.com (flifla)
I am one of those people who always gets the "Possible Side Effects"
listed on the package. Long read here:
At the beginning of treatment, I was unable to perform the most basic
tasks. My first shot I came down with a terrible headache and feeling of
sadness and tiredness. I felt that just opening my mouth to talk was
itself a huge task. I felt just AWFUL. I needed help to do the most
basic of household tasks. I had a funny taste in my mouth. I sweated at
night and felt hot and cold. I became nauseuous. My body hurt all over,
in a weird way. I felt as if I had been exposed to Uranium! As the
months went by, I was able to make do and got my energy back. Then new
sides started. Hair loss- big hair loss. Itching. Crying (anti
depressants- get on them now! before it starts!) Rage- get on something
like Ativan or else you could get into major fights- not kidding. Pale
pale skin. You will turn "blue-ish" and look 15 years older. You will
have aches and pains. My headache and backache have never gone away. I
simply got "used to it".
Extremely dry skin.
Your teeth might fall out. Not kidding. I have seen major teeth changes
since TX. Sleep with your mouth closed. Use Maalox as a mouthwash- the
chemical reaction helps the moister content? in your mouth. I have been
on treatment now for 6 months and my side effects have changed. You will
find that each month or so the complaints will range from one thing to
something new.
I now have horrible leg cramps, fungal issues on the skin (got an RX
called Alcortin, a cream) the fungus gave me sores on my scalp and
itchy-ness all over (nice, thinning hair with SORES) and my eyesight has
gotten blurry. Forgetfullness: you will forget what happened yesterday,
last night, or entire conversations. You might get lost driving on a
familiar road.
I have to say, I took temporary leave from work. I have since gotten
"better" and returned back to my same old job. I am debating as to
whether to get on disability again. The frequent Dr appointments you
have to show up for are a real drag, and sometimes your Dr might call
you to "come in rught away! Your white blood cell count is low and you
need a Neulasta shot!" try telling your employer you suddenly have to
leave. It's hard.
I HAVE read from some on treatment that they have little to no side
effects. I really don't know how this is possible! Not with what I am
going through, and the very nature of the medications. Good luck asn
STICK WITH IT. Although I have been through real hell here, I am
determined to go throught the whole year.
Caesar wrote:
Ok, you've been diagnosed with Help C and the doctor wants to begin the
accepted method of treatment of Interferon, so what is one to expect? Is
the shot used in conjunction with something else and I have read posts
where people say they go "crazy" and all of that during treatment, some
must stop it and so on.
Would someone take the time to explain all of this to us newbies, both
who post and who are afraid to, so that we get a general idea of what to
expect and/or could happen, in detail?
I will be seeing the doctor in a few weeks, I hope. I would like to know
some of this so that I can ask the right questions and have some
knowledge before I see him again.
Thanks,
Caesar

http://community.webtv.net/elmoemerson/DocElmosHepFile

http://community.webtv.net/elmoemerson/TheFamilyAlbum
Waterspider - 25 Sep 2006 23:13 GMT
> Ok, you've been diagnosed with Help C

Waaaay better than being diagnosed with Hep C <g>
 
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