Just diagnosed- terrified and alone.

I was just recently diagnosed - March 2006.  1a.  In BC, Canada.

I've finally gotten the courage to post, but have been reading posts here for weeks.

I feel alone in this - the stigma is great, and many people are ignorant or uneducated, or both.

I'm being screened for treatment next Tues.

My question was - Pegasys or Peginteron?  Any opinions or suggestions would be welcome.

[mycoldfeet]

You are never alone here, we all were scared, confused, and didn't know what to do, we all here for you and way over a hundred years of experience in all this, and this forum is like a family. Welcome, and feel free anytime day or night to talk, vent, or ask questions, there isn't anything some of us hasn't experienced and willing to share.

[bobbyullc]

I AM SORRY BUT I NEVER UNDERSTOOD THE stygma PART?  THIS IS A SICKNESS THAT 170 MILLION HAVE IN THE WORLD AND 4 MIL IN THE US.
WOULD ANYONE BE ASHAMED OF THE FLU?
PEG-INTRON IS SUPPOSED TO HAVE THE BEST SUCCESS RATE BUT PEGASIS THE LEAST SIDES. THIS IS NOT THE END BUT SOMETHING TO LIVE AROUND AND FIND A CURE.

WHAT IS YOU BIOPSY SCORE. 1 - 4 ?
BOBBY

[couchpotato]

What part of B.C. are you in? I'm on the Island and was a geno type 2, treated and cleared in '04. Husband had a liver transplant at Vancouver General in '04 also. This is a nasty virus, and although some people have a harder time than others, the tx is doable. I think the hardest past is the diagnosis and all the questions and fears it represents. You have found an excellent place to come for support and information,  most if not all of your questions will pretty much be answered here. Personally, I never cared about what anybody thought about me and my husband having hep, in the grand scheme of things, does it REALLY matter?

Mattie

[Lonestar823]

You came to the right place then Daylin.  And I'm sure everyone else began where you are, terrified and alone.  And you're quite right about ignorance being the major cause for the stigma.  I had never heard of hep c before.  Maybe I'd heard the word but it never registered. Now I know more than I ever wanted to know.  Funny the little bubbles of a world we sometimes live in huh?  Jeez, I remember my heart pounding so hard and feeling like a little animal that had to hide out.  Later on I felt like the Dragon as I've heard some call hep c was really just a rotten little virus and I couldn't wait to put the "rat poison" down (interferon) to kill it.  Not sure which interferon is best.  I ended up doing a long haul with one called infergen.  It's kinda tough Daylin but quite doable if you want to bad enough and you can tolerate the treatment.     Hold your head up high, shoulders back and one foot in front of the other.  After a little while the stigma fades because for me anyway it was mostly in my own head.  If you choose to tell friends and you loose one or two, smile and pat yourself on the back for ridding yourself from them.  We'll all be looking out for you here.

[TravisB]

DayLyn:  This is not a death sentence.  In fact this is not a disease that you may actually ever feel symptoms of.  Yes, it's something you have to deal with, but keep in mind that there are many, many people that die of old age without ever even knowing they had hepc.  You will learn to live with it and find the strength to wage a fight which you will win.  Either way, it's something you can deal with.  Good luck.

[way]

I vote pegasys. That's what I'm on. Pre-loaded very easy.  (I'm a 2b)

I have read here on this forum that there is less side effect with pegasys. And peg-intron has more sx.

I think this would be a question for your doctor.

I probably shouldn't say this but I think I read here that some who treat with pegasys and relapse, then go to peg-intron. I really don't know the difference.

You said you are alone. Do you live alone? I know how hard that is and how you must be feeling. I was alone in Las Vegas and then moved to Tennessee with family and live with brother. After I got here I found out my DX, was glad to not be so alone in this but it's still hard with no significant other.

You have friends here 24/7. I googled a support group that meets at a local church once a week and I might do that.

Take care

[Forseegood]

What an excellent post from Couchpotato, really, does it matter what other people think in the long run? The way I look at it, they don't pay my car payments or rent, or even care about me one way or another after 2 minutes of consideration....if they are not friends or family.....so why the h@ll should we care what strangers think about us for having this? Unless we are going to get active and ralley for ourselves...

What I can't stand is every once in awhile, I beat *myself* up for having this, why did I hang out with those kids way back when? Why was I so stupid? ...such wasted energy, as if beating myself up now for things I did in the past would do me any good "now" whatsoever...Best we can do is go into a certain amount of acceptence and do whatever we need to do, now, to deal with this...get the best docs, everything we need to do as far as testing procedures, etc....

Daylyn: of course this is easier said then done, and so many people do it, but I hope you can be as positive as you can be under the circumstances...and not do a six month freak out like I did, where I just sat around and thought it would be the END of me...cause that was 5 years ago now and I'm still tickin...for myself, positive media in the form of funny movies and books, and counseling and meditation helped tremendously to get me out of that slug like state after diagnosis...be well...

[DougV]

Kind of depends on weight.  Pegintron is weight based so some doctors prefer it for larger people.  Pegasys is same dose regardless of weight.  Statistically there is little difference.  Pegintron is available both in redipen and as powder you self mix.  If you travel a lot the powder is the way to go as it does not need to be kept in the fridge.  I preferred the powder, hated the redipen 'cause I found it awkward to hold and didn't trust it.  But I think almost everyone else in the world likes the redipen better.  Unsure if pegasys is available in powdered form or not.

Best of luck.  

Doug

[rearfang]

Welcome to this forum, and I am sorry for your diagnosis. We were all where you are at one time, so you are not alone among us. As TravisB said, try to remember that most people die WITH Hep C, not from it. I know there are some, so I do not mean to minimize the seriousness of the virus, but just want to provide some perspective. As for the treatment options, I have heard different things about whether or not one is better than the other, but I don't think any of it is proven, I did 48 weeks on Pegasys w/ few side effects and am approaching my 6 month post PCR and hope/pray I am still negative. Keep us informed as you learn more about your status.
Lauren

[GrandOak]

First of all welcome, I think you've come to a good place for help and support.

Many of us are at or have been where you are at.  Some, like myself, struggled through the initial stages of diagnosis, biopsy, beginning tx without knowledge and alone.  IMHO having been ther done that, you're fortunate to not have go that route.

As for your questions, I think you would find a variety of opinions and an equal number of studies for and against one treatment over the other.  Few, if any have actually done head to head studies for these treatments, and the one I am aware of was largely funded and heavily staffed by one of the companies which produces the recommend treatment (imagine that).

Personally, I am on the Pegasys/Riba and also like the preloaded syringes.  I've never had to mix a formula, so am not familiar with how easy or complicated that can be.  Having been one of those bad IVDU for a short time 30 years ago in my youth, which is where I probably contracted this insidious disease (shame on me for playing a possible part in the stigma, but I never reached the point of having track marks and physical atrophy) and a breeder/exhibitor of dogs who vaccinated my own dogs, I never was bothered by the thought of SQ injections.  Couple that with my recent experiences of having to draw Procrit and Neupogen from multiple vials (more than I care to count these days), I don't think I would be hampered by having to mix and injection like PegIntron requires.

My suggestion would be to go with the treatment your doc is most familar and comfortable with you using.  That way he/she will be more on top of your treatment should to become more complicated, as it seems many Geno 1's tend to do.

[Pdilly]

Hello there.  Do come and join us when you need to.  We all have been where you are now at one time or another.  It is scary.  I too found out in March.  I think I cried for 2 weeks. Now I realize I can live but have to do the nasty treatments.   Hopefully you have some support where you are.  I have told very few and mostly my family.   They are all supportive and that has been so great.  I have a tendancy to hide things and go it alone so this is a whole new approach for me.  ANyway have you had any of the tests yet?   I am geno 2  stage 2-3 and grade 2-3.  I start treatment Sept 29th.

[jmjm530]

Oh, the stigma thing. I'm sure you'll get lots of different input here but here's my two cents.

I only told a few family members and one or two friends. I work by myself so that was not an issue. However, it has been an issue for a number of folks here and from what I've read, the recommendation is not to disclose at work unless you really have to, and then just maybe to your immediate supervisor.

[Sweetie6852]

Join the fridge brigade - someone posted that to me and it made me laugh.  I start today with my first tx. And the PegaInterfuron is in the fridge like the 10,000 lb gorilla.  Again I was petrified when the Dr told me.  It was how could I have that and what is it and how did I get it. The unknown is scarey.  I'm single and high stress job and it's like I'm at the peak of my career and this has to happen now.  But I'll be tougher, more educated, more empathetic to others going through this and I will get through this, but I won't be able to do it alone.  I researched, and learned a lot.  The people you discuss things with here, you think sometimes they read your mind and tell you things you haven't asked yet but were going to. They become your support and you can learn from the experiences.  Everyone here is so helpful, caring and kind.  You need a positive attitude and a will to get better and you will.  Good luck and welcome.

[strator]

DayLyn,
Welcome to the forum. You sure are talking about a familiar place, with the fears and the worries in the beginning. We humans should all  put our heads together to come up with a name for that room, where we feel overwhelmed and alone and afraid and uncertain about the future. I

[FlGuy]

Which interferon to use? In the words of William S. "2a or not 2a" or "2b or not 2b".  As you know the are two choices with traditional combo therapy Alpha 2a or Alpha 2b.  Studies that I've read show not appreciable difference in the effectiveness of either.  If you research further you'll see a lot of these studies are sponsored by the drug makers themselves and the people who conduct a lot of the studies are funded by the makers.

I am facing the same choice and don't know what to do. The first time around I used Alpha2b (Shering's).  I got to undetected virus levels and then relapsed after treatment (tx). So I've decided to take a scientic approach to the decision. But, I am undecided even with what scientific approach to use.  But, it will be one of coin tossing, rock-paper-scissors with my self (this one needs more thought), throwing a syringe a a target while blindfolded, or by polling this group (ala Family Feud).  So stay tuned.

One hint, if you are a heavy person (and I don't mean ponderously thoughtful but ponderously large, alpha2B might be for you).  If you are normal size Canadian, it's back to a toss-up.

By the way, love your geese but they **** all over my neighborhood.  Good luck.

[Moniker]

Don't feel too alone; you have this web forum. Maybe you could find a support group in your area. There is a good support group at my VA Hospital in Connecticut. It's a good place to find out more about treatment, and to know that your not alone. There might be a hep c a support group in your area.

I didn't worry about the stigma; I told everybody about my hep c and treatment. I didn't have any problem. People we're nice to me. Maybe it would be wiser to not tell people because if you tell one person, you better expect that everyone will hear about it. Still I told people and nobody seemed to shun me or anything. When I talked about it, I always said that hep c isn't casually contagious, you can only get it from blood transfusion, or if you share a tattoo, or that sort of thing. People gave me a lot of nice support and they still wanted to go out with me, or come over to visit.

Bob

[jmjm530]

Day: and many people are ignorant or uneducated, or both.
------------------------------------------------------------
(With my best DeNiro Voice)...."Ya talkin' to me !!!!   :)

---------------------------------------------------------

Pegasys or Peg Intron?

Not surprisingly, the studies sponsored by Roache suggest Pegasys and the ones sponsored by Shearing, suggest Peg Intron :)

Probably most people here treat with Pegasys and probably because their doctors recommended it and probably because Roache (makers of Pegasys) have a bigger marketing budget in the States.

Personally, I treated with Pegasys -- successfully I might add -- but from what I've read and heard, to do it all over again (and believe me I have no desire to :) ) I'd probably go with Peg Intron due to the molecule size and some other stuff I really don't understand all that well.

Molecule stuff aside, Peg Intron is dosed per body weight, while Pegasys is dosed the same for all weights. Therefore an argument could be made that if you're on the Twiggy side, you get more drug for the pound (kilo in your case) if you treat with Pegasys. On the other hand, if you're on the heavier side, Peg Intron may make more sense. There's also the issue which drug your medical team has more experience with, however I imagine the managment of both is fairly similar.

Anyway, welcome to the discussion group and try and learn as much as possible before making any decisions.

All the best.

-- Jim

[Mister beagle bailey]

Welcome to the forum, and just know you'll never be alone here.  You'll find a lot for support and knowledge on this forum, from people who care.

Hang in there and let us know how you make out.

Beagle

[rifleman]

Jim works by himself because nobody can stand to be around him for long.
Just kiddin, Jim.  How did those beverages taste w/ your triple lobster platter?
As for pegasys v. pegintron. . . . .  My opinion is that Pegasys is like Jennifer Aniston and Pegintron is like Angelina Jolie.  Jennifer is very nice, but sort of vanilla.  Jolie is salsaaaa.....
DJL

[jmjm530]

I guess that would make Consensus Interferon (Infergen) more like Scarlett Johannson :)  Yeah, Lobster dinner was great with a couple of cold ones! May have to repeat soon. Hope this finds you well.

-- Jim

[FlGuy]

If Pegasys is Jennifer Aniston and PegIntron is Angelina Jolie then ribavirin must be Roseanne Barr.

[Snookmiester]

No wonder I threw up after ever Riba!!!!!!!!!! Agggghhhhh!!

But personally, if I had the choice described to me like the ole' Rifleman put it, it would defiantely be Pegintron for me. I have Anniston at home already!

[cuteus]

welcome to the place you will call home during tx, a lifeline. Ignore the hissing fits when they happen and enjoy the happy chats and jokes. \
Choose any of the interferons, they are statistically the same as stated by some. Some that have relapsed with Pegintron try Pegasys and get SVR and some that relapsed with Pegasys try Pegintron successfully.
Members have said that pegasys was easier on the sides so I chose it. I liked the vials because I squeezed every drop out into the syringe. After they switched me to the prefills, I was mad!  But the prefilled syringes are very convenient to have.  
I got my SVR with Pegasys/copegus after 72-74 wks of treatment.

[beamishboy]

what if the medicine is insulin??

[Kalio1]

Hope you keep visiting here, it can really help. As to the people who judge you...bear in mind at least one out of every 10 of them has Hep C too they just dont know it yet. Hold your head up high and remember you dont need OR want judgemental, self righeous people as friends! There are lots of people with Hep C that were infected when they received blood products prior to 1992. People were infected thru vaccination guns and in many other settings, the general public is totally uneducated about it. Its bad enough to find out you have it, you dont need any more stress! Glad you joined us here.

[DayLyn]

You are right!  I have spent the last 15 years teaching my children that what other people think doesn't matter.  I guess I have to take my own advice....

I can guess that everyone here has probably felt this way (alone, afraid and emotional) atleast once.  It's nice to know that I'm not alone.

You all are a godsend.

I liken it to being all alone on a little tiny raft in the middle of a huge ocean with nothing in site, and then realizing that there are thousands of other people rowing toward you.....

:)

[DayLyn]

I just wanted to say - I read your news yesterday, and added you to my prayers last night.

Today, you are on my post, with kind words and compassion for me - what character you have.  There are few people that I have met thus far in life that will measure up to a guy like you.

You are a phenomenal person - and I am grateful to have had the opportunity to talk with you.

Best of luck to you - with such a positive attitude, I can't help but know deep within, that good things will come back to you.

[Tater-ToT]

LMAO.... Thanks for that vivid mental...
I invisioned Rosanne in that movie when she played that character with the hairy mole on her face.... Gack!
:0

[Snookmiester]

You are definately sick my man, sick I tell you!!! LOL

[Forseegood]

Glad you mentioned the happy chats and goofyness as well as everything else....I thought they were going to go the way of the platypus...if they go, I'd go, this place would be far, far too serious an informational site that I could go get elsewhere anyway....I like the fact that we can mix it up here a little bit...makes it entertaining, like the inimitable Mary Poppin says...a spoonful of sugar will make the medicine go down...with qualifications of course, we need a little control and discretion along with everything else...

And I could never understand why some people think this type of banter would somehow eclipse the straight hep c info, this place is screaming with hep c info and always will be...hope youre well...

[DayLyn]

I'm just curious - why would you have to take treatment for 72 weeks.  That's a very, very long time.  How in the world did you cope?  I thought that 48 weeks was the longest tx.
Are you SVR still?
What is your genotype?

Thanks for the thoughts - I appreciate it.

[FlGuy]

You'll probably hear from Rocker on that spoonful of sugar comment.

[DayLyn]

Thanks for the supportive words.  How far into treatment are you?  It's great that you have family to help you out!

I live alone with my kids.  My family live in another province, too far away, and very busy with their own lives.  

Some days it's really tough, and others not so bad.  I've found out that I don't really have that many good friends.

The second you freak out a little they all seem to disappear.  That is the part that's really getting to me.  I moved to BC away from my family 15 years ago.  When the ex and I split, I was truly alone, but it was ok cause I had great (not) friends.  Since this all came about, I've realized that I don't really have any great friends.....

I'm a bummer - I'm always tired, and can't go out "partying".  I'm naseous alot of the time - so no road trips for me.  Basically, I'm just no fun anymore....

Sorry for whining - it's been one of those days.
:)

[DayLyn]

Thanks to everyone!  I cried reading your replies.  Oh, to be accepted.  

I have three children and an ex.  My family all live about 14 hour drive away.  My kids are 10,13 & 15.  They are wonderful, but are kids, so just want what they want, and don't understand why mommy can't do it all.  

I live in an upper middle class neighbourhood, in the Fraser Valley and it's enough of a stigma to be a single mom here - having hep c ....well, people are cruel.

Time to move, perhaps :)

I have been reading this forum for weeks - the kindness and support here is extraordinary.

Thanks again.  

[ex-city-slicker]

Hi, I just got DX last week.  I also am terrified and did feel alone until I found others on line. .  I cryed off & on all last week. Have you dicussed TX w/your docotr yet.  What has helped me over the last week , is understanding HEP c is not a death sentence, but it is going to be a battle.  I'll be glad to be part of your support system as I start my journey to battle this V.

DS

[ex-city-slicker]

Hi, I just got DX last week.  I also am terrified and did feel alone until I found others on line. .  I cryed off & on all last week. Have you dicussed TX w/your docotr yet.  What has helped me over the last week , is understanding HEP c is not a death sentence, but it is going to be a battle.  I'll be glad to be part of your support system as I start my journey to battle this V.

DS

[DayLyn]

It's nice to not feel all alone...  

The news is hard when you first get it, I guess it takes a little while to get used to it.  I still haven't.  I am going in on Tuesday to discuss which treatment the specialist thinks is best.  Will be staring on Sept. 22nd.  I am halfways excited to get started on killing this thing and halfways completly terrified.

Please keep me updated, and let me know what is happening with you - we can go through this journey together.

I wish good luck, comfort and strength to you!

Day

[DayLyn]

I know what you mean about needing the day off.  I spent one whole day at the spa - just cause.

I was exactly where you are about three months ago.  Gosh, can I ever feel your pain.

I found out from routine bloodwork prior to heart surgery.  I was worried about everything under the sun, but never, in a million years did I think I would have hep c.

I go see the specialist tomorrow, and yes, I have tons of questions - all written down - three pages full.  I am to start tx Sept 22nd.  I will keep you posted for sure.  I would like nothing more than to have someone to go through this with.  People in our lives who don't have hep c just will not ever understand.  Please feel free to e-mail me @ ***@****.

I will add you to my prayers tonight Donna.  Funny - I was never religous....

[ex-city-slicker]

Dear DayLyn,

Pleas call me Donna, as that is my name.  I was very happy to see your response, it made me fell better, almost made me cry. I see a gastro doc. on 9/28. I have been very emotional all last week.  I was just DX on Wed., but I got the news in the mail,last Sat.  I applied for life insurance & was rejected. When I read the letter, it felt like I was given a death sentence. I have a positive outlook on life & have overcome many things.  This is just 1 more to add to the list.  I went into some of the chats rooms on other sights, and felt worse, afterwards. I want to connect with someone through this who will understand, and stay tough.  I think that is you! It great to meet you, please stay in touch.  Your doc. appointment is before mine, I'll be thinking if you. Are you going to write down questions for him/her. I have been checking information online like crazy. Today  I' m going to give myself a break and go out to buy a new pair of shoes!

Your new friend,Donna

[ex-city-slicker]

Hi DayLyn,

I was thinking about you.  How did you make out at the doctors?  & how was the SPA?  My anxiety level is alittle high, I think it will be until I see the Doctor on 9/28.  

Donna

[DayLyn]

Good morning Donna.

The dr. went well.  I am very pleased with my new specialist.  It took me a few tries to find one that I felt comfortable with.

We discussed all the treatment options (there aren't many), and decided that Pegasys is probably the one for me.  I will be seeing him again, prior to starting treatment, so I have some time to think of any more questions.  

My start date is still Sept 22nd.  I will keep you posted on how that goes, and what is happening.

I remember waiting for that first appt. - what a horrible few weeks that was.  I didn't get much info. that first time, the Dr. spent about 5 min with me, told me to go get some blood tests, and come back in 6 weeks.  Boy, was I devastated!

I hope this is not the case for you.  Where are you at?  Have you had any blood work done yet?  Do you have a specialist?  I hope you're hanging in there.  Do you have support at home? A Where do you live?

Take Care. I'll keep you in my prayers.
Day

[ex-city-slicker]

Hi Daylyn,

I have been watching for your response. I start reading through some of the other postings and find it upsetting some times.  I had blood work done @ my PCP to confirm the the DX. The PCP made an appointment for me w/the specialist. I have no idea what to expect. I have tryed not to think about it, and have been keeping busy. What is Pegasys?  Do you have symptoms?  I have lived in NH almost 3 yrs.  I am from Phila.  I moved to NH for some peace.  I like the mountains. I live w/someone. We have been together 6 yrs. He is supportive, although I have been spending too much time alone on the weekends, because he is working. I don't have any close friends. I have work friends, but  I would not  share my HVC Dx with them. I am going to go hiking, w/a few co-workers on Sunday.

Take Care,
Your in my thoughts, and I do pray.

Donna

[DayLyn]

Hi again Donna....
I did post my e-mail earlier- feel free to use it.  I know how hard it is to feel alone - but u r not.  U have me.  Anytime.  Pegasys is the standard treatment for HCV, along with Ribavirin.  I have to keep it short here - I'm at work, but please do send me an e-mail.

Keep me posted on the Dr. and labs, and such.  

Yes, I do have some sx.  mostly sick to my stomach and fatigue.  I also have very sore bones and achey (achy) muscles.

I've been somewhat depressed as well, but have to keep your chin up and smile on your face......

Take care.  I hope I hear from u soon.

Daylyn

[sunspot]

Your first shot is tommorrow. Let us know how it went. I have my fingers crossed that you have no sides.
Dana

[DayLyn]

Thanks for posting.  I have had my treatment pushed back, which is a real downer.

My doctor thinks I'm a little "underweight" and wants me to try and gains a few pounds before starting.

We are meeting next tuesday to do the needle training.  I will be weighed on Friday, and maybe set a new date then.

:(

Daylyn

[bowdeen]

hi i am new here too i posted a couple of times here. i am in bc canada too.hope tou are doing well.my treatment starts jan 2.this is a great place to come and get support and lots of information.good luck.your in my preyers.

[sunspot]

I hope you see this post as it is a bit old and I missed your reply in Sept. I never hear of underweight being a factor in treating. Over, yes but not under.


bowdeen
Why don't you post at the top of the more active threads?I ask because not many folks are bottom feeders, like me, and you will get more responces that way.
I hope you are well today.
Dana