Hep C-Genotype 2

Hello to everyone, I am a 30 year old female,Newly diagnosed with Hep C-Genotype 2. Viral Load approx 1,500,000. The funny thing is that I have had Hep C since 1982 and never knew I had it.  I recommend everyone order there old medical records. So, Im on my third week of treatment and feel soooo sick.  4 pills a day and one shot, thats about all I can handle.  The First week was terrible aches and pains everywhere. Second week was fine. I thought I would be able to handle it. This week OMG I cant stand for long periods of time. I feel so tired, I don't want to work.  Majority of the time I can't concentrate on what Im supposed to do.  I also have the urge to yell at people-I guess thats why they just Prescribed anti-depressants. Has anyone stopped working because of this -gone on disability? Will this get better?

[imbetternow]

I'm a 50 year male with Genotype 2 and started at 1,5000,000. Did peg combo treatment in 2004. 6 pills a day and injection a week. I had no problems at all but am considered a non-responder to peg.

My doctor prescribed Infergen. Problem was, my insurance company would'nt pay for it. My doc got some samples and I did 210 days of Infergen/combination therapy. I cleared but my doc couldn't get any more samples so he put me on Peg to try to maintain. I relapsed.  I feel pretty good about Infergen doing the job but just can't get the finacial help to acquire it.

You'll have good days. Enjoy um! Finish your treatment if you have access to the drugs.!! Try to stay busy and not dwell on the way you feel.

Good Luck,

Wes

[NYgirl]

LOL you should realize that most of us in here have had it for that long too and none of us knew it either :)

It's a darn lucky thing that we found out that we DO have it so we can take care of it.

We must have all been at one wild party that we forgot about one night huh?  :)

It would be nearly impossible to get disability unless you have another condition unfortunately.  It would be VERY hard to prove that a condition you didn't even know you had was causing you to be that ill you couldn't work (they just don't understand how hard treatment is).  I come to work every day wishing it was time to go home. When my hemoglobin dropped DRASTICALLY in a week and I could NOT handle it (I kept fainting when Iwould try to stand) is the only time I took sick days regarding this (two).  I've taken a total of 3 and it's NOT been easy but I have to have money.

Why did they put you on the daily shot? Did you relapse before? That makes no sense for a geno 2 at all, maybe I read soemthing wrong.

I am a GENO 1A and 1B and they only started me on weekly Peg-Int and a 1a/1b is about as bad as genotype you could think up to get.

Or did you mean a once a week shot?  I'm on 1,000 Riba/and Peg and it's not easy but after 31 weeks I keep reminding myself...another one down.

Sounds like you need your hemoglobin checked - I hope you ARE having weekly CBCs right now right?

[Alady1620]

I have heard from many, many people that unless a person has another condition in addition to the hep c, that he/she will not get diability.

Of course, if you work for a large company, you will fall under FMLA laws.

[doglover28]

Tracy,
Thank you!  I can't get in to see a specialist until the 16th of May.  I am 42/female.  Most likely contracted this between the ages of 15 and 17.  I wish I could get in to see a doc earlier.  The one I am going to works at Duke. I guess that is good since it's a academic place.  I don't know

[doglover28]

I hope I made the right choice on a doctor. I found him from a Hep C website.  The doc wasn't that much help.  He told me to call if I couldn't find a doc to treat

[amirtracy]

It doesn't sound like your dr. is very compassionate.. personally speaking, i LOVE my dr. and his nurse. they are so there if i need anything, always returning my calls, etc. I don't even have insurance and they treat me well!! you deserve that kind of treatment. you should demand it. i'm from NC originally but only know of dr.'s in fla. now, i'm sure many more will be on who can recommend a doctor...take care and try not to worry. (I'm 40 yr. old female. 2 boys...)


If anyone can suggest a dr. or treatment facility for her?????

[doglover28]

Thanks!
How long ago were you diagnosed?  I keep trying to be positive, but I keep thinking it has been a death sentence. I have been in good health. Dr. picked up on it during routine exam. ALT was 48. Had me come back for another liver panel (ALT went down to 24), and tested positive for Antibody. Then had the additional test to confirm the virus.  Now all I keep thinking is liver failure. I know I should think positive, but it's hard

[doglover28]

Hi All,

I just got my results today.  I am a 1A.  I am freaking out. I've heard 1A is the hardest to treat.

[amirtracy]

http://www.infergenaspire.com/wt/page/index

this link has information about help w/ infergen. you might have to call the patient reimbursement number for the most help. i don't have insurance so i've researched all the programs. i'm on schering=ploughs "commitment to care" program which pays 100% of meds and delivers to my door monthly. there's programs for rescue drugs too if you  need those...best of luck to you.  tracy

[amirtracy]

Hi. It's hard NOT to freak out but most of us here are geno 1's... I'm 1b. 1's make up roughly 75% of all genotypes in the US. I was praying i'd hear 2 or 3 when my lab work came back but i didn't. it's harder to treat and treatment is twice as long but the odds are still worth it to me. I'm week 9/48. Waiting and the fear of not knowing are the worst things about this whole process. and it is a process. but know you're not alone. that others are here for you. there are some brillant minds and kind hearts in this forum who know more than any doctor ever will about this disease. best of luck to you and try not to panic. it's just the beginning...not the end.   tracy

[can-do-man]

Being from duke he should be good. Getting in to a good hepo takes time so may 16th isn't so bad. Best of luck to you and put together a list of questions. I know the wait is terrible but with hep-c you have time to make sure. And if you don't think much of him look around. Again take care

[doglover28]

Thank you.  I guess not knowing what stage I am at is freaking me out the most. When my primary called with the news today, he said he didn't think I was in Liver failure yet.

[can-do-man]

not to be nosy, but does the 28 mean your age? If so then the odds of your liver being in to bad of shape is real low. Plus i think you would know if you were in liver failure. Im a stage 4 and grade 2. Is there any special reason you think your in liver failure?

[can-do-man]

Should have added that your primary should know if there was any hint of liver failure.

[can-do-man]

same here i found out thru routine tests. And yes the wait is the worse.

[amirtracy]

I was diagnosed Oct. 19, 2005. I couldn't afford a biopsy until January 6th so for 2 1/2 months i was sure it was as bad as it could get. but it wasn't. i was stage 2. grade 1. plenty of time in other words. i contracted hcv thru drugs almost 20 years ago. i drank heavily until i found out. my point is that i totally abused my liver for many many years and at 40 i'm stage 2. i know this is hard but chances are you're fine. the waiting is the hardest part, i think tom petty said. ;)
This forum will be a lifeline for you. Any questions or doubts, just ask. the people here are AMAZING.  please try not to worry tooooo much. you'll be just fine.   tracy

[Pdilly]

I understand totally what you are going through.  I found out via a blood test.  I have an appointment next tuesday (its taken me 4 weeks to get in to see him) and  hopefully he will do the usual blood tests to determine the viral loads etc.  The wait is terrible and that is what everyone says.  I always hear people say they got it here or there.  I have no idea personally when I got it. I feel good and don't feel like anything is wrong.  I wonder if that is normal....  Any of you who are in treatment...how did you find out?   Was it a routine blood test or were you having problems and then they checked?

[amirtracy]

i found out thru routine tests. i never had any symptoms except some swollen glands. i'm new into treatment. week 9. and like nygirl says it's "doable". for me anyway. so far anyway...best of luck to you.  tracy

[dyce]

My friend , I can relate to the wanting to yell at every1 on this stuff. I wonder if there's gunpowder mixed with this riba?

[can-do-man]

Your just doing what we all do, if you were in liver failure it wouldn't be the silent Killer. Your a geno 2, young, and female, all them things are greatly in your favor. Alot of docs don't want to bx geno 2 or geno 3. most see no need to since your odds if you treat are around 75 to 85%. So that should tell you something. But do get a bx. Its an easy thing to have but scares most people. It did me, But theres nothing to it and since your going to duke they know what their doing. Any questions just ask any of us here, any test they do someone here has had it done. Believe me your going through the worst part of this whole thing. The worry and wait. Then when you think your going to start you usually end up waiting more.

[doglover28]

No, the 28 is my birthdate.  I am 42.  No particular reason that I feel like I am in Liver failure.  I'm not retaining fluids or anything.  I feel fine. I guess it's just from all the stuff that I've read about it being a "silent Killer."

[doglover28]

Can Do,
I am hoping the Liver isn't too damaged.  I would kind of like to wait until the end of August to treat.  I'll just have to see.  The 1A freaked me out because I read it's the hardest to treat, but it's the one that most people have.

[can-do-man]

Well im also a 1a, So when you find out you have little damage you might want to talk to him about these new drugs. Either way by time you get the bx, and back to the doc. then other tests that they can think of. I really don't think you could start before the end of august anyway.

[Mister beagle bailey]

Welcome amd sorry your having a hard time.  I'm a geno 2B also and have 7 weeks let.  For me the first week was the worse,  Make sure you drink a lot of water and keep an eye on your HGb for anemia.  My HGB dropped as low as 7.1, and I'm also on procrit.  If you haven't already done so, get a script for procrit.  We call that and other drugs rescue drugs, as many here get anemia from the meds.  It also takes 4 to 6 weeks for the procrit to kick in.  I promise you the sides will get better in time.  Thank God like me you have only 24 weeks of tratment.  Also buy GOLD BOND TRIPLE ACTION LOTION for the riba rash, i started using it before treatment started and I'm on week 17 and no rash so far. If you have any questions just post them and you will be answered by all.

Hope this helps,

Beagle

[amirtracy]

Hi. and welcome. sorry you're suffering so. have you have your blood checked weekly? sounds like you might be getting anemic.? there are people here who are better suited to respond but i just wanted you to know that it got easier for me after the first 3-4 weeks. i don't need rescue drugs YET but the initial drop in hemoglobin did make me feel like you described for a week or so...i hope it gets easier for you. there are people here who can help... best of luck,  tracy

[doglover28]

no, I'm a 1A.   I was hoping he would say 2!

[strator]

thubbard - Welcome here. Treatment can be pretty up and down and how you feel ths week may be totally different from next week. Stay close to the board here when you can and you'll find that you kind of get the hang of it by osmosis..and asking questions. Aren't any definitive answers to how each of us will do on treatment but...
I'm on week 32 and still doing construction 5to 6 hours a day, a single parent of a 14yro with my 83yro Dad here mostly in a wheelchair(tho he's a bull), and maintaining a full lifestyle. I had no idea when I started if I'd end up layed up unable to work but so far with the help of people here and my body getting used to it. Some have it a lot rougher but you can only do what you can and take steps you need to change. With me I told my family I'd be taking more naps,and I do plan them into the day, I'd be getting mood swings,etc.
I break my day up into sections and that allows me to stay active, which really seems to help.BTW I've had this since probably 1975 and only found out 3 years ago.

doglover- I'm a geno 1a w/a starting viral load of 18.7 million. I was a drunk and addict for close to 30years, starting my days with a 1/2pint or pint of vodaka before breakfast. So I was SURE my liver was just a day away from failing when they told me I had hep c and I read up on it. At the time I hadn't been sober too long and the brain cells were shaky enough. Turned out I'm a grade 2, stage 1 to 2, I took over 2 years working on my sobriety, seeing a therapist to prepare for treatment, and joining a hep support group. Bottom line is this disease (just like the treatment) can effect us individuals in a very random way. Right now, you need to take the energy that is so easy to put into worrying about what your results will be, and get as much education on the liver and hep as you can. Don't overwhelm yourself though. Make a list of things you want to find out and assign 1 or so a day(or week)  to yourself. This is a disease and treatment that requires patience to deal with(I always had very little but I'm learning). Your grading and staging results will NOT change by getting worked up over it. It also can put you in a bad spot emotionally if you get too optimistic on the expectations of good results. They'll be what they are and you like all of us here will find the best track to traetment for you-if it's even needed.

Both of you be well, this is a great gang to go through this with,
Don

[zero limit]

Being treated for HCV does not qualify for disability?  How about anemia as a result of sx, or depression?  I pay for both short and long term disability insurance where I work.  May not qualify? Something else I need to look into without tipping my hand.

You folks are full of surprises!  I'd like to hear more detail on this subject another timt.  

Good nite to all,

zero

[JPinNOLA]

Good morning.  My first post.  55 yr old male, contracted in '72.  Week 7 starts tomorrow.  Lucky, I'm Genotype 2, hope the 24 weeks hold true.  Like others posting every week is different.  First & second week, nothing.  Third week, migrane (migraine) for six straight days, never had a migrane (migraine) before.  Think of the new experiences :)  Now fatigue constant, but blood work still ok.  This weekend swollen lymph nodes, had a couple of bad nights while body fought infection.

Two questions.  Have developed the rash.  Has anyone else had good luck with Gold Bond?  Also, injecting in legs, not much fat on my legs and they are looking pretty bad.  Anybody injecting in belly?  Not a plesant thought.

Several posts state that it gets better as you go along.  Mine has been worse, and different, each week.  When does the law of diminishing returns kick in?

Thanks for the posts.

[Mister beagle bailey]

Welcome to the forum, I am a 2B also and have 7 weeks left of treatment.  I do the shots in my thights and belly, I switch.  For me the beginning of treatment was fine, not many sides, then my HGB dropped to 7.1 and I needed a transfusion to stay on full meds.  Then I did fine again but the last 2 weeks have had a fever on and off of around 101.2.  
I started using gold bond before starting treatment so for me it worked as I still have no rash.  But Goofy dad had posted something that worked for him and with this brain fog I can't remember what it is.  I hope Goofy sees this and will post what the med is, the only thing I remember is it starts with a C.

I should also mention that I had anemia before I started treatment.

Hope this helps,

Beagle

[strator]

Welcome to post toast pastry world. This is a great place for help getting through tx and hep c info, not to mention help getting through life in general.

Rash: A lot of people swear by the Gold Bond. It didn't seem to help me but maybe it was just because the itch had suddenly come on fast around week 12 or so and got so bad it would wake me from sleep and feel like my BP was going up.
I think though just like we can all react to the meds different it's the same with cremes, lotions and anti itch stuff. I've had better luck with the Aveeno body wash and Aveeno daily moisturizers. So you might have to try a few things(actually I use WalMart's generic brand.) When it got real bad it would keep me from or wake me from sleeping, my dr prescribed Atarax which is hydroxine, others here had told me about it.

(Hydroxyzine depresses activity in the central nervous system (brain and spinal cord), which causes relaxation and relief from anxiety.
Hydroxyzine is also an antihistamine. It blocks the effects of the naturally occurring chemical histamine in your body. This makes hydroxyzine useful for treating allergic conditions, especially those that involve the skin, such as hives, itching, and rashes.)
It kinda knocked me out so I only used it a few times at night. Haven't needed it since but still use the lotions.

Belly shots: I've been taking the pegasys shot in the belly since the beginning, ((I'm on wk 32, geno 1a). Never tried the thigh cause not much fat there. Not a heck of a lot on belly these days but I go in at a 45dg angle. I just alternate each week back and forth and grab an area left or right of belly button about 2" below it. Other than  a handful of little red spots I haven't noticed any pain other than twice a minor sting.
Keep us posted  and ask, ask, ask...
Be Well,
Don

[strator]

Just wanted to add-the Aveeno(or knockoff)I use is the one that has collodial oatmeal in it.

[doglover28]

Can Do,
What new drugs were you referring to back in the thread?
Pam

[can-do-man]

Theres 3 that so far are looking good, Still 2 to 4 years from getting to the market. Plus remember their still in trial so anything could go wrong. But so far things look really good.

The leader they say is vertex, then schering-ploughs SCH 503034 and also looking very good is Idenix NM 283. Theres a couple people here in the NM283 trial now. One of them goes by alady1620. The 1620 might be wrong but i know the alady is correct

[doglover28]

Hopefully they will more apt to cure the 1 A genotype, since that's the hardest to treat.
You all have been my saving grace.

[can-do-man]

geno 1s are what their working on with these new drugs and trials

[doglover28]

I guess there is no need to make my decision until after the biopsy.  I'm just glad I am not as freaked out as I was. I truly thought it was the end

[doglover28]

You are totally right about not getting worked up.  I went for a long bike ride in the woods today and didn't even think about Hep C.  Thank you for your words of wisdom.  It's crazy to be trying to guess what it will be. I'll just deal with whatever it is and instead of worrying for the results...I'm going to enjoy each precious day.

[doglover28]

You are totally right about not getting worked up.  I went for a long bike ride in the woods today and didn't even think about Hep C.  Thank you for your words of wisdom.  It's crazy to be trying to guess what it will be. I'll just deal with whatever it is and instead of worrying for the results...I'm going to enjoy each precious day.