Check in

[Guest guest]

Check with your doctor, the new drugs are out. I am a living monument to the new drugs. I was in a clinical trial and I am undetectable a year later, looking forward to a long life.

And by the way, I just got a job working for Caremark, it is a local drug company. Hee Hee, I am loving life.

Love

Janet

"There are souls in this world that have the gift of finding joy everywhere and of leaving it behind them when they go"

Frederick Faber

To: Hepatitis_C_Central Sent: Tuesday, September 13, 2011 9:01 AMSubject: Re: Check in

Hi Everyone,

I've been on no mail for a few years and have decided that it is time to come back and get involved again in the group. Our story..

My daughter moved in with us when she was 6 years old. Her bio parents have Hep C and unfortunatly her mother lost her fight when was only 5.

started treatment at 6, (peg and ribavin) initially responded, but unfortunatly the virus returned. The side effect was to ruin her thyroid as well so now she is on Thyroid medication.

Fast forward a few years, she is know 14 and doing great. Low viral count, stage 2 fibrosis of the liver, still hypothyroid issues but over all a normal teen. We homeschool due to her constantly getting sick at public schools. Every little sniffle gets her sick for weeks. Our plans for the future is to get her graduated from highschool early then start treatment again before college. That way she can just focus on getting healthy while still living at home with me so I can nurse her, maybe have her take some online classes if she is up to it. So that is what we are getting ready for. With her being a youth we have to wait longer for the new drugs to come out, they test everything on adults first then once that is established they can start trials on kids.

She is also on Dandilion and milk thistle pills which I pray help. I think the hardest thing for her is the brain fog. even though she is not on medication currently there are times that she just can't think. I do believe it is more than the average teen brainlessness LOL But admit that it hits hardest durring algebra

I have a question for anyone if you have read this far. If you have a child with Hep C did you start Social Security Assistance for them. I am thinking about getting her enrolled so that it will be easier once she is an adult if she continues to struggle with the disease.

Shayne Mom to (6) Conception (8) Naomi (9) (14) (ARMY airborn 82nd)

Be the kind of woman that when your feet hit the floor each morning the devil says ~~

"Oh Crap, She's up!"

[Guest guest]

Hi Shayne,Did I read well that PEG and/or Ribovin destroyed her thyroid????I could not find this side effect on the internet.Thank you for the post.Jan P.HCMFrom: Shayne Rivers

To: Hepatitis_C_Central Sent: Tuesday, September 13, 2011 9:01 PMSubject: Re: Check in

Hi Everyone,

I've been on no mail for a few years and have decided that it is time to come back and get involved again in the group. Our story..

My daughter moved in with us when she was 6 years old. Her bio parents have Hep C and unfortunatly her mother lost her fight when was only 5.

started treatment at 6, (peg and ribavin) initially responded, but unfortunatly the virus returned. The side effect was to ruin her thyroid as well so now she is on Thyroid medication.

Fast forward a few years, she is know 14 and doing great. Low viral count, stage 2 fibrosis of the liver, still hypothyroid issues but over all a normal teen. We homeschool due to her constantly getting sick at public schools. Every little sniffle gets her sick for weeks. Our plans for the future is to get her graduated from highschool early then start treatment again before college. That way she can just focus on getting healthy while still living at home with me so I can nurse her, maybe have her take some online classes if she is up to it. So that is what we are getting ready for. With her being a youth we have to wait longer for the new drugs to come out, they test everything on adults first then once that is established they can start trials on kids.

She is also on Dandilion and milk thistle pills which I pray help. I think the hardest thing for her is the brain fog. even though she is not on medication currently there are times that she just can't think. I do believe it is more than the average teen brainlessness LOL But admit that it hits hardest durring algebra

I have a question for anyone if you have read this far. If you have a child with Hep C did you start Social Security Assistance for them. I am thinking about getting her enrolled so that it will be easier once she is an adult if she continues to struggle with the disease.

Shayne Mom to (6) Conception (8) Naomi (9) (14) (ARMY airborn 82nd)

Be the kind of woman that when your feet hit the floor each morning the devil says ~~

"Oh Crap, She's up!"

[Guest guest]

Hi all,

Well I'm in day 5 of triple combo therapy with Teleprevir. So far not too bad,

although I do have waves of nausea that come and sometimes stay... but not

intolerable. Some other fleeting things like irritability, hot/cold, headache,

and of course fatigue, but I feel better than I anticipated. So part of me says,

" well take it one day at a time, perhaps it gets worse as time wears on. "

I have a few questions if you don't mind.

1)I'm told to stay out of the sun completely, wear sunscreen and cover up. The

rash from the sun can force you off treatment. Anybody had any experience with

this?

2) I suppose I'm bloated is what you call it but my stomach is sticking out like

I ate a huge balloon and is actually painful. Anyone experience this. I'm

cutting down on the amount of food, as I feel like that is all I do, but this

seems odd.

3)Did you feel worse at the beginning, or middle or end or does it come and go.

Thanks so much

Hanging in there,

[Guest guest]

Actually I got the rash from the sun, still get it. I wear a hat,sunscreen. It occurs around my eyes. It doesn't hurt just looks funny. But the hat and sunscreen keeps it from spreading.

With me it came and went. I had my good days and my bad days.

Don't let the treatment make you a shut in. I did what I thought I could do. I traveled, I went on hikes,(okay, I walked slowly) but I was out there. I even went to the beach, swam,collected shells.

Love

Janet

"There are souls in this world that have the gift of finding joy everywhere and of leaving it behind them when they go"

Frederick Faber

To: Hepatitis_C_Central Sent: Tuesday, July 31, 2012 9:41 PMSubject: Check in

Hi all,Well I'm in day 5 of triple combo therapy with Teleprevir. So far not too bad, although I do have waves of nausea that come and sometimes stay... but not intolerable. Some other fleeting things like irritability, hot/cold, headache, and of course fatigue, but I feel better than I anticipated. So part of me says, "well take it one day at a time, perhaps it gets worse as time wears on."I have a few questions if you don't mind.1)I'm told to stay out of the sun completely, wear sunscreen and cover up. The rash from the sun can force you off treatment. Anybody had any experience with this?2) I suppose I'm bloated is what you call it but my stomach is sticking out like I ate a huge balloon and is actually painful. Anyone experience this. I'm cutting down on the amount of food, as I feel like that is all I do, but this seems odd.3)Did you feel worse at the beginning, or middle or end or does it come and

go.Thanks so muchHanging in there,

[Guest guest]

Being on treatment, living on the coast of NC and having a boat is hard for me not to be in the sun. It is extremely dangerous for most people to be in the sun on any medication and this is no exception. I went out a couple of weeks ago and I use the childrens 50 sunscreen (so it doesn't burn my eyes) and I stayed in the shade as much as possible. I also kept a Tshirt on and still got burnt on the bottom of my legs and the top of my feet (I would really hurt if I didn't have some protection on). I plan on staying out of the sun as much as possible.I haven't had a problem with bloating so I would probably check with your doctor, that could be serious. Last time I got very bloated I had problems with my colon and almost died. Please pay close attention to

that.I felt worse in the first 12 weeks and that is the incivek. Do rest every moment you feel tired and don't be concerned about what others think. This is my third attempt on meds (incivek being new this time around) and I was miserable on treatment one and two, but, I didn't pay attention to hydration at all (that means no caffeine and if you must, make up for it with caffeine free liquid). I feel 100% better staying dehydrated. I drank coke last weekend (what do we call that...ADDICTION, lol) and my eye balls were so dehydrated they felt like they were going dry up to nothing. I feel in my body what I put into it and I'm sure all patients are the same in hydration. So stick with the 12 weeks on incivek and it will get better as long as you take care of your body with much moisture (that includes your

head).Love,Sheila To: Hepatitis_C_Central Sent: Tuesday, July 31, 2012 10:41 PM Subject: Check in

Hi all,

Well I'm in day 5 of triple combo therapy with Teleprevir. So far not too bad, although I do have waves of nausea that come and sometimes stay... but not intolerable. Some other fleeting things like irritability, hot/cold, headache, and of course fatigue, but I feel better than I anticipated. So part of me says, "well take it one day at a time, perhaps it gets worse as time wears on."

I have a few questions if you don't mind.

1)I'm told to stay out of the sun completely, wear sunscreen and cover up. The rash from the sun can force you off treatment. Anybody had any experience with this?

2) I suppose I'm bloated is what you call it but my stomach is sticking out like I ate a huge balloon and is actually painful. Anyone experience this. I'm cutting down on the amount of food, as I feel like that is all I do, but this seems odd.

3)Did you feel worse at the beginning, or middle or end or does it come and go.

Thanks so much

Hanging in there,

[Guest guest]

Being on treatment, living on the coast of NC and having a boat is hard for me not to be in the sun. It is extremely dangerous for most people to be in the sun on any medication and this is no exception. I went out a couple of weeks ago and I use the childrens 50 sunscreen (so it doesn't burn my eyes) and I stayed in the shade as much as possible. I also kept a Tshirt on and still got burnt on the bottom of my legs and the top of my feet (I would really hurt if I didn't have some protection on). I plan on staying out of the sun as much as possible.I haven't had a problem with bloating so I would probably check with your doctor, that could be serious. Last time I got very bloated I had problems with my colon and almost died. Please pay close attention to

that.I felt worse in the first 12 weeks and that is the incivek. Do rest every moment you feel tired and don't be concerned about what others think. This is my third attempt on meds (incivek being new this time around) and I was miserable on treatment one and two, but, I didn't pay attention to hydration at all (that means no caffeine and if you must, make up for it with caffeine free liquid). I feel 100% better staying dehydrated. I drank coke last weekend (what do we call that...ADDICTION, lol) and my eye balls were so dehydrated they felt like they were going dry up to nothing. I feel in my body what I put into it and I'm sure all patients are the same in hydration. So stick with the 12 weeks on incivek and it will get better as long as you take care of your body with much moisture (that includes your

head).Love,Sheila To: Hepatitis_C_Central Sent: Tuesday, July 31, 2012 10:41 PM Subject: Check in

Hi all,

Well I'm in day 5 of triple combo therapy with Teleprevir. So far not too bad, although I do have waves of nausea that come and sometimes stay... but not intolerable. Some other fleeting things like irritability, hot/cold, headache, and of course fatigue, but I feel better than I anticipated. So part of me says, "well take it one day at a time, perhaps it gets worse as time wears on."

I have a few questions if you don't mind.

1)I'm told to stay out of the sun completely, wear sunscreen and cover up. The rash from the sun can force you off treatment. Anybody had any experience with this?

2) I suppose I'm bloated is what you call it but my stomach is sticking out like I ate a huge balloon and is actually painful. Anyone experience this. I'm cutting down on the amount of food, as I feel like that is all I do, but this seems odd.

3)Did you feel worse at the beginning, or middle or end or does it come and go.

Thanks so much

Hanging in there,

[Guest guest]

I'm in week 15, so I'm done with the Incivek. I never got the rash, I did, and still do, get frequent nausea, go from hot to cold instantly, get headaches, irritability & tension, joint & muscle aches, and most of all the extreme fatigue. I take an injection of Procrit every 5 days to help build up my red blood cells.

I just take it a day at a time, and like you said, I move very slowly! Most people don't understand, they just think I'm lazy, but my friends know the score. So no one else matters anyway.

I find it hard to drink enough water! It's a battle. But I manage.

To: "Hepatitis_C_Central " <Hepatitis_C_Central > Sent: Wednesday, August 1, 2012 9:02 AMSubject: Re: Check in

Actually I got the rash from the sun, still get it. I wear a hat,sunscreen. It occurs around my eyes. It doesn't hurt just looks funny. But the hat and sunscreen keeps it from spreading.

With me it came and went. I had my good days and my bad days.

Don't let the treatment make you a shut in. I did what I thought I could do. I traveled, I went on hikes,(okay, I walked slowly) but I was out there. I even went to the beach, swam,collected shells.

Love

Janet

"There are souls in this world that have the gift of finding joy everywhere and of leaving it behind them when they go"

Frederick Faber

To: Hepatitis_C_Central Sent: Tuesday, July 31, 2012 9:41 PMSubject: Check in

Hi all,Well I'm in day 5 of triple combo therapy with Teleprevir. So far not too bad, although I do have waves of nausea that come and sometimes stay... but not intolerable. Some other fleeting things like irritability, hot/cold, headache, and of course fatigue, but I feel better than I anticipated. So part of me says, "well take it one day at a time, perhaps it gets worse as time wears on."I have a few questions if you don't mind.1)I'm told to stay out of the sun completely, wear sunscreen and cover up. The rash from the sun can force you off treatment. Anybody had any experience with this?2) I suppose I'm bloated is what you call it but my stomach is sticking out like I ate a huge balloon and is actually painful. Anyone experience this. I'm cutting down on the amount of food, as I feel like that is all I do, but this seems odd.3)Did you feel worse at the beginning, or middle or end or does it come and

go.Thanks so muchHanging in there,

[Guest guest]

Glad to hear that it is do-able.  I will be starting my treatment around the 15th of this month.  Just got started on Prozac yesterday.  Congrats for making it past the Incivek!  Tricia

 

I'm in week 15, so I'm done with the Incivek. I never got the rash, I did, and still do, get frequent nausea, go from hot to cold instantly, get headaches, irritability & tension, joint & muscle aches, and most of all the extreme fatigue. I take an injection of Procrit every 5 days to help build up my red blood cells.

I just take it a day at a time, and like you said, I move very slowly! Most people don't understand, they just think I'm lazy, but my friends know the score. So no one else matters anyway.

I find it hard to drink enough water! It's a battle. But I manage.

[Guest guest]

Hey Twee,

Nice to hear from you. I share all of your symptoms but I'm so glad you

mentioned irritability and tension. I don't feel depressed at all, I'm actually

used to feeling unwell physically, but I feel very fragile and irritable and

there's no knowing what will send a flash of anger up my spine (and sometimes

out of my mouth!). I'm not crazy about that, I'll be furious with some minor

comment someone makes, then I'm telling a touching story, and I can't hold back

the tears. I'm laughing at myself and crying at the same time. I was hoping this

was temporary!

Another thing, I'm Canadian so our bilirubin scores are different than yours but

normal is 0-20 and I was 12 before I started and after week one I'm 23. I'm

waiting to hear from the doctor if they are concerned. Did anyone have that

problem?

By the way, I heard that the Incivek side effects can last for a month

afterward, so hopefully some of that will go away for you, although I think my

nausea is the Riba and I know my husband had headaches throughout his treatment.

Anyway, have a great weekend everyone.

>

> I'm in week 15, so I'm done with the Incivek. I never got the rash, I did, and

still do, get frequent nausea, go from hot to cold instantly, get headaches,

irritability & tension, joint & muscle aches, and most of all the extreme

fatigue. I take an injection of Procrit every 5 days to help build up my red

blood cells.

> I just take it a day at a time, and like you said, I move very slowly! Most

people don't understand, they just think I'm lazy, but my friends know the

score. So no one else matters anyway.

> I find it hard to drink enough water! It's a battle. But I manage.

>

>

> ________________________________

>

> To: " Hepatitis_C_Central "

<Hepatitis_C_Central >

> Sent: Wednesday, August 1, 2012 9:02 AM

> Subject: Re: Check in

>

>

>  

> Actually I got the rash from the sun, still get it. I wear a hat,sunscreen. It

occurs around my eyes. It doesn't hurt just looks funny. But the hat and

sunscreen keeps it from spreading.

> With me it came and went. I had my good days and my bad days.

> Don't let the treatment make you a shut in. I did what I thought I could do. I

traveled, I went on hikes,(okay, I walked slowly) but I was out there. I even

went to the beach, swam,collected shells.

> Love

> Janet

>

> " There are souls in this world that have the gift of finding joy everywhere

and of leaving it behind them when they go "

> Frederick Faber

>

>

>

>

> ________________________________

>

> To: Hepatitis_C_Central

> Sent: Tuesday, July 31, 2012 9:41 PM

> Subject: Check in

>

>

>  

> Hi all,

> Well I'm in day 5 of triple combo therapy with Teleprevir. So far not too bad,

although I do have waves of nausea that come and sometimes stay... but not

intolerable. Some other fleeting things like irritability, hot/cold, headache,

and of course fatigue, but I feel better than I anticipated. So part of me says,

" well take it one day at a time, perhaps it gets worse as time wears on. "

>

> I have a few questions if you don't mind.

>

> 1)I'm told to stay out of the sun completely, wear sunscreen and cover up. The

rash from the sun can force you off treatment. Anybody had any experience with

this?

>

> 2) I suppose I'm bloated is what you call it but my stomach is sticking out

like I ate a huge balloon and is actually painful. Anyone experience this. I'm

cutting down on the amount of food, as I feel like that is all I do, but this

seems odd.

>

> 3)Did you feel worse at the beginning, or middle or end or does it come and

go.

>

> Thanks so much

> Hanging in there,

>

>