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Medical Forum / Diseases and Disorders / Hepatitis / September 2006

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Excuses while on Treatment??

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Caesar - 22 Sep 2006 16:06 GMT
I have read the possible side effects of treatment: hair loss, teeth
loss, fatigue, plus others. I have only told a couple of really
trusted friends of what I have. I am single, but I don't want to worry
my family or have people in my complex start talking if these things
occur.

Family will certainly begin to ask questions if I lose my hair or
teeth. I need your help so that I can prepare myself. Any suggestions?

Also, I was vaccinated for Hep A and B, but the B did not take, even
after two tries. Why would that "B"?

Thanks,
Caesar
Gordo Mondragon - 22 Sep 2006 18:22 GMT
My experience:

It's not so much hair loss as hair thinning.  You will probably notice
it more than other people.  Some people have said that Nioxin shampoo
helps.  I kept my hair short and no one noticed it.  You might also try
using a conditioner.

I don't think you have to worry about losing any teeth - make sure and
brush well and keep your mouth from drying out, which it will.  I drank
water all the time and used Biotene dry mouth mouthwash which helped a
lot.

People have different reactions to treatment.  I remember several people
here who were able to work out regularly, even.  You will see more
people where with side-effects or who had side-effects because this is a
support group and those are the people who need it.  

If you do have stronger side-effects, they might include losing weight
and looking sort of grey and gaunt.  You can help counteract that eating
as much as you can and finding foods that you feel like eating (that are
easy to prepare is important.)

Also, I would use (don't laugh) Grape Seed Peel Off Masque by Queen
Helene.  You smear it on, it dries, and you peel it off.  Besides being
fun to peel off it seemed to pull up my skin and make me feel less saggy.

Some people get depressed and cry a lot, and some people (me included)
would suggest talking to your doctor about starting on a antidepressant.  
It can really make a huge difference.

Some people also get "Riba Rage" which is a weird thing where you can
develop a hairtrigger temper and before you know it you're yelling at
someone - even if you're not like that in general.  Learning to just
keep your mouth shut can be very useful.

You can also develop dry skin, especially on your legs, and if you don't
take care of it you can get itchy sores.  At the first sign of it use a
good skin lotion.  I used GOLD BOND ULTIMATE HEALING SKIN THERAPY
LOTION, I'd smear it on right after a shower and it worked great.

You might consider telling your family if you begin to feel bad - I know
there's a stigma to Hep C but if you say (even if it's not true) that
you don't know how you got it, that a lot of people don't, then that can
stop the questions.  I found it easier to say "the treatment is making
me sick but when it's done I'll feel much better" than to pretend
everything was OK when it obviously wasn't.

You might also want people around who know what's going on if you ever
need help with cooking, cleaning, stuff that you might not have the
energy for.  For me, there were times where everything was just TOO
DIFFICULT and I couldn't figure what to do.  Calling someone who had
offered to help was important to me and I was glad I didn't have to
explain it at the time.

It's very possible you won't have bad sides or will feel a little grumpy
and tired and everything will be OK, but I think most people would say
is that the last thing you want to do is to find yourself feeling bad
off and not being prepared for the possibility.  

There are times when making excuses is just too difficult and will
stress you, and being stressed is something to avoid on treatment.

When do you start?

Gordo

> I have read the possible side effects of treatment: hair loss, teeth
> loss, fatigue, plus others. I have only told a couple of really
[quoted text clipped - 10 lines]
> Thanks,
> Caesar
Firestar - 22 Sep 2006 18:48 GMT
> I have read the possible side effects of treatment: hair loss, teeth
> loss, fatigue, plus others. I have only told a couple of really
[quoted text clipped - 10 lines]
> Thanks,
> Caesar

C,
It's not unusual for people to fail to respond ( "sero-convert" ) after
receiving Hep B vaccine.  By "..two times.." do you mean two shots, or did
you get the full
series twice?  There is much data showing that even those that do not
sero-convert do respond when exposed to Hep B virus.  Not to worry.
Thom
tom - 22 Sep 2006 22:57 GMT
> I have read the possible side effects of treatment: hair loss, teeth
> loss, fatigue, plus others. I have only told a couple of really
[quoted text clipped - 10 lines]
> Thanks,
> Caesar

I stayed in the closet also when I discovered I had Hep-C but after about 9
months of treatment my hair loss/thinning and ghostly pallor gave me away.
Rather than make excuses I came clean when people asked and once that starts
you need to tell everyone. You might want to talk with people before you're
forced into it.

I didn't have teeth problems but suffered from gum irritations and
infections. I used a rinse made by Oral-B called "Amosan". Diligent use of
this rinse would clear up my gum problems till the next episode broke out.

If you're OK with it might want to stock up on some Marijuana. It helped me
with depression, sleeplessness, nausea and loss of appetite.

My blood sugar also shot up quite high during tx but has returned to normal
in the 10 months since completing tx.
Burke Gilman - 23 Sep 2006 00:05 GMT
> I have read the possible side effects of treatment: hair loss, teeth
> loss, fatigue, plus others. I have only told a couple of really
[quoted text clipped - 10 lines]
> Thanks,
> Caesar

Hair tends to get brittle and so it breaks off and thins out as a
result. Follicles typically remain intact and so the hair returns to
normal after you detox from Tx. If you cut your hair off, then no
problems. I cut mine very short with clippers to preempt any episodes
of hair on the pillow and other visual distractions that some HCV
patients complain of. Clippers are cheap, and I'm still using them now
post-Tx and intend to continue to do so until I've gone through at
least several weeks of  detox from the ribavirin.

Because Tx often causes dry mouth and typically suppresses the blood
neutrophil count and thereby causes a lowered immunity to bacterial and
fungal infections that might attack the mouth, I got my teeth cleaned
as soon as I could at the beginning of Tx. Minor periodontal problems
can be aggravated by dry mouth or reduced resistance to infection that
is associated with Tx. More severe periodontal problems might
conceivably lead to tooth loss under treatment, but such problems lead
to tooth loss anyway. I doubt very much that it will happen, but imo if
you lose teeth you might as well attribute the change to a history of
substandard dental care and/or chronic periodontal disease rather than
associate it with any particular side effect of HCV Tx!

Based on all my experience, both personal and vicarious, fatigue is a
universal problem among patients on interferon and ribavirin. Some
people adapt better than others, that is all. You will probably feel
like you are dragging your a.s and it may be obvious to other people
from time to time, depending on what you normally do. In situations
where you are normally sedentary, it's most likely that other people
will not notice any changes in your activity level. It remains true,
however, that this state of fatigue is one of illness, and when an
individual falls ill a normal response is for the person to socially
adapt by a mode of apology for the impact the illness has on other
people. Consequently, if you become too fatigued to keep regular
activities that you share with other people, you might be compelled to
explain to some of those people that you are sick, rather than let
those people automatically assume that you've lost interest in the
shared activity. To be sure, there were a couple times during my Tx
when it proved necessary for me to account for myself by explaining I
suffered disability as a result of side effects related to antiviral
chemotherapy.

Additional to the problems of fatigue, other side affects of tx that
present social impairments are impaired mental acuity and reduced
emotional stability. How difficult these problem are varies a great
deal, but it's almost certain hat you need to adapt and communication
with others may be a required part of that adaptation just like it is
in the case of fatigue. You arguably will not be the same person, and
you may be compelled to explain that to those you are close to. You
might need to explain, for example, that you can't think clearly or
that you feel exaggerated emotions that sometimes distort your outward
behavior. In my case, for example, it was compulsory that I explain to
my young son, who I live with, that my occasional episodes of outright
craziness were at no time his fault.

Long story short, I think it unlikely anybody in your *complex* will
notice or care that you are on tx. You might find you take the elevator
instead of the stairs or that you prefer to avoid conversation as is
usual for a person that's not feeling well, but that's about it. If
consistent with my own experience, mostly what will be going on with
you will be an inside job, a battle between just you and the dragon.
Therein lies the rub: You will fight alone.
-bg
Sourdo - 24 Sep 2006 05:59 GMT
well if you have sides like I did, there ain't no hiding it.

I found it easier to avoid people. Most people didn't understand, even good
friends. They would, in good intent, say something like "But you LOOK
good!", and I would bite my tounge from saying "GO f.ck OFF", hehe...

I had the hep a and b, but the a didn't take. I had to have a booster when I
went to Peru and Chile. Especially Peru, nice country but poor and
unsanitary. Why the f.cking "a" didn't it work?

My hair didn't fall out, more like it broke off, brittle and gray. Even the
hair on my legs broke off. And of course the two "little moons" of bare skin
on my hairy belly where I did my shots.. It grew back after a few months.

I found it easier to tell everyone what I was doing. No shame that way.

Russ

Signature

Russ

http://www.tannersacre.com
sourdo55 at yahoo.com

> I have read the possible side effects of treatment: hair loss, teeth
> loss, fatigue, plus others. I have only told a couple of really
[quoted text clipped - 10 lines]
> Thanks,
> Caesar
Ally - 24 Sep 2006 13:29 GMT
> I have read the possible side effects of treatment: hair loss, teeth
> loss, fatigue, plus others. I have only told a couple of really
[quoted text clipped - 10 lines]
> Thanks,
> Caesar

If you don't want to say the "HepC" word, just tell them you are being
treated for a "liver disease" which is true. But I am with everyone
else on this, it is easier to come clean then try and pretend nothing
is wrong. In my experience I found that more people want to help you
then shun you.

Ally
cwk - 27 Sep 2006 08:17 GMT
> I have read the possible side effects of treatment: hair loss, teeth
> loss, fatigue, plus others. I have only told a couple of really
[quoted text clipped - 10 lines]
> Thanks,
> Caesar

I've been pretty open about what's going on.  The occasional
"Howdjuhgiddit?" question comes along which I answer quite truthfully
"Idunno."  I've got an idea, but frankly, that's my business.

Being open about it has spared friends and neighbors some alarm.  I'm
now almost 36 weeks into the 48 week program and there's no doubt that
I'm showing some miles.  My hair is thinning and getting fine, my skin
is kind of parched looking, and I'm tired and look it.  Basically I
look like I've aged five years in the past nine months.  I talked with
an acquainance who works with my wife. I didn't mention my health, but
she went running to my wife the next day at work asking "What's
wrong??!?"

p.s. Don't worry too much about losing teeth.  Take care of your teeth
(brush, floss, rinse) and keep hydrated.  Dry mouth causes much of the
damage associated with treatment.  Keep up your cleanings and let your
dentist know you're on treatment.
cwk - 27 Sep 2006 08:23 GMT
[....]
p.p.s.  When I finish this nonsense people are going to wonder whether
I have a nasty old portrait somewhere.  One of the thoughts that keeps
me truckin'.
 
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