Re: Information needed on treatment with Pegasys

[Guest guest]

I have taken both of the drugs you have and I am now taken peg. It seem for me to be easier than the other two. LaDonna

[Guest guest]

Suzie,

It sounds like your quality of life has suffered with the constant

fatigue, and your liver is already in cirrhosis, so why not try the

pegasys? If nothing else it will help to stop progression of the

cirrhosis. If your liver continues to progress through the later

stages of cirrhosis, the fatigue, etc. will seem like a picnic

compared to what people living with end stage liver disease go

through. Yes, the treatment is tough. It's a form of chemotherapy,

but through my support group I have found many people who are

tolerating the pegasys much better than the old interferon that I was

on 2 1/2 years ago. And many people are becoming undetectable. Talk

to people about it (since you're so isolated, you probably don't have

a local support group, but if by chance you do, it may be very

helpful to you to check it out) and weigh your options. Whatever you

choose to do, we are here for you.

P.S. I've been undetectable since Nov. 2000. and the fatigue is a

thing of the past :-)

> Hello , my name is Suzie . I'm a SWF who lives with a 21 year old

> Siamese cat so I don't have a really big support group. I tested

> positive for hep c in 1996 ( I think , my memory's giving me

> problems ) and was diagnosed with cirrhosis in '97.

> At the time I was seeing a gastroenterologist who was pretty

> aggressive treatment wise - he put me on alpha-intereferon in '97

> and when I didn't respond he got me into a study for interferon and

> ribivarin in '98 or '99 - I didn't respond to that either . He was

> talking about me going on pegasys but he died suddenly due to an

> autoimmune disorder .

> Since I live in the GWN ( great white north - thunder bay

ontario

> canada ) it took a while to get a new doc . I'm now seeing an

> infectious diseases specialist who also wants me to go on pegasys.

> I'm wary of anything that is interferon 'cause I got almost every

> side effect you can both times that I was on the stuff and I don't

> really want to go through that again and not get any response out

of

> it. My test results are poor - ALT has never been below 68 usually

> around 150 to 200 , AST lowest 55 average 150 to 200, my platlets

> are low and I'm starting to lose my memory . I'm exhausted all the

> time but I'm not doing anything ! I was diagnosed 2 years ago with

> diabetes and because of the shape my liver's in the doc put me

right

> onto insulin (4 shots a day).

> I'm new to this whole computer thing - a friend lets me use his .

> I hope I haven't messed up on anything.

> If anyone can help me figure out whether I want to take the

> Pegasys or not please do - I can use all the help I can get.

> Thanks

> Suzie

[Guest guest]

Hi Suzie nice to meet you. I have never heard of the meds you are speaking off. I am currently in the middle of a twelve month treatment of peg-intron/ribaviren.

I have 5 months to go.. I understand the tired, memory loss and loow counts.

I am immunosuppressed due to the treatment but my viral load is now undetectable.

Bonnie

[Guest guest]

I have taken the peg for one month now and it is a lot easier than the other treatments. I am a little run down but not like I was with the other treatments. I can still go to work and take care of my family. I will only be on the treatment for six months. I have five left to go. ladonna

[Guest guest]

Souns like your daughter and I are almost on the same does..

I take 5ml of peg intron weekly and 600mg of rebitol 3x a day.

The treatment is hard. I am loosing my hair and am constantly sick with upper respritory infections. The treatment seems to aggrivate my asthma.

I will keep your daughter in my prayers

Bonnie

~*~ A Bonny Garden ~*~

[Guest guest]

I truly understand the fatigue. I work 9 hours a day Tuesday through Friday at a very Busy Pediatric Practive. The weekends leave me sick and ill.. After I inject I run a 102 fever until monday and have all those awful flu symptoms.

even after 6 months of treatmeny I still get a butt kicking every weekend. LOL

Antotrher fun side effect is severe bone pain. It is awful, I take percocet or vicodin. Does anyone else get horrible pain in their spine after injection?

I also have vertigo from treatment and have to take meclazine to keep my head from spinning like a top.

Bonnie

~*~ A Bonny Garden ~*~

[Guest guest]

Hi Gare good to hear from you again. I was worried about you. I am really fatigued and constantly nausea. I can handle that and it is better than other treatments. I am really sick the first day of the shot. Fever, chills and aches. I usually go to bed and stay there the evening of the shot. I have a problem with rashes a couple of days after the shots. The eye doctor said my tear duct are drying out so I have to put drops in now. Still it is better than before. The headache get me once in a while.

Take care and I'll say some prayer so that you will get a new liver. LaDonna

[Guest guest]

Hi Ladonna and others who have done peg

It's Garry I have been on peg since feb 7 and if responsive they want yr course of tx I agree with LaDonna not as nasty but for me still get sick for about 4 days after injection but more run down and light nauseous feeling all the time can not handle any pressure on may meds to compensate.

I am( end) stage 4 cirrhosis. And have geno type 1A did seven months last yr of rebretron interferon and ribavarin.

I am having lung problems this round that I did not seem to on first one.Can't keep bronchial open all full of flem....Still constant heavy physical fatigue. Meds for depression suck and I will be quitting those very soon....For now I wonder if I should be going through as I am end stage and was total non responder last time alt 'were low to start 100 and finished at about 570 after 7 months of tx..

They were down to 350 before peg.. and now at about 200 but still can tell I am working 12 hrs a week but will not be able to for long.. it is running me down.but still only into this almost 2 months I did same on rebetron took dive in alt's in first few months then sky high again.

Another treat is I have developed infections in my teeth which is just great and losing some fillings.... seems like my teeth are getting soft?? not sure..

But another 8 pills a day to battle that on top of all others.. oh well what Can I say.

I hope this finds you all well

as always you re in my prayers Daily

Gare

PS I have not been on it was to much to deal with for while all those waiting for livers hang in there...and be try to make best of each day

Re: Information needed on treatment with Pegasys

I have taken the peg for one month now and it is a lot easier than the other treatments. I am a little run down but not like I was with the other treatments. I can still go to work and take care of my family. I will only be on the treatment for six months. I have five left to go. ladonna

[Guest guest]

Bonnie,

{ Antotrher fun side effect is severe bone pain. It is awful, I take

percocet or vicodin. Does anyone else get horrible pain in their spine after

injection? I also have vertigo from treatment and have to take meclazine to

keep my head from spinning like a top. }

I have been off treatment for almost 6 months now, genotype 3a - now

undetectable, blood test in a few weeks for next... the bone pain or joint

pain, I didn't have it while on treatment, but since being off treatment,

it's hell... I don't take anything for it, as it's best to not give the

liver things bad for it... I've had severe dizziness for about 4 years now,

again not treatment related, just hepatitis c related...

Princess

[Guest guest]

thx Ladonna

bad news was in resesutation unit they could not get blood pressure up all weekend as I passed out at home on sat morn due to long story... re side effects. I got absessed teeth and anti biotics got me severe cramping so quit. Then on wed got nasty headache and got worse till I was passed out on floor on sat morn. called 911 and to make long story short had bowel infection that got away and they got it in check but 20 hrs in unit first..

No I think when I quit meds for teeth,they drained into stomach and gave me infection.Plus antibiotics I stopped made the infection harder to deal with I guess .

Anyways with end stage cirrhosis and week 10 of peg they freaked with the amount infection needed to be deal with > it felt like I was going to puke up a lung..lol

but feel stronger today and guy next to me in room was I worse shape so I thought oh well can always be worse...Evewrybone in my body was screaming in pain. One thing I learned personally was I am sick of not taking things for pain next time I get major toxic head I will be taking major pain relief was not good to let it get away as it was sign of infection out of control.

Take you all and hope your well and trying to stay happy and healthy

As always you are all in my prayers

Re: Information needed on treatment with Pegasys

Hi Gare good to hear from you again. I was worried about you. I am really fatigued and constantly nausea. I can handle that and it is better than other treatments. I am really sick the first day of the shot. Fever, chills and aches. I usually go to bed and stay there the evening of the shot. I have a problem with rashes a couple of days after the shots. The eye doctor said my tear duct are drying out so I have to put drops in now. Still it is better than before. The headache get me once in a while. Take care and I'll say some prayer so that you will get a new liver. LaDonna

[Guest guest]

What was your viral load when you started Bonnie?