Im am pretty upset

I just found out that I tested positive for the Hep C antibody.

I am so sad.  I dont know what is going on.

now I have to call around for insurance and stuff/dont qualify for Medicaid since I am not broke.

I need to schedule for 1 more blood test to check out what my viral load is if there is any at all, but all signs point to a viral load whatever that is.

I am sooooooooooooooooooo sad.  :(

[NYgirl]

Well we all know how you feel since we have ALL been in your shoes before.

I am at work and don't have time this minute to type a lot but let me tell you one thing - it's NOT a death sentence or anything at all.  You have a disease BUT there is a CURE and as those of us in here can testify to you - the treatment is doable.

You are not alone.

What Genotype did they say you are?  You should try to have a biopsy before you make any decision about treatment or not - if your liver is not badly damaged you most likely can wait until you DO have insurance - but if it is in worse shape then you should figure something out (the companies that make the meds DO provide help!).

I would seriously consider having a biopsy before any decision - it might help you make life a bit more tolerable to know exactly where you stand.

Best of luck

[FlGuy]

Testing positive for the antibody does not necessarily mean you have HCV.  Your post leaves out a little context. It obviously came out of a blood test.  Are ther other results, in addition to the antibody?  Anything like AST or ALT listed? No need to freak out at this point, until you have further tests done.  If you have further results from the test, post them for further input.  There are no docs here but there are folks who are knowledgeable and can give you hints and suggestions.  When are your follow-up tests?

[Moniker]

Almost fifteen years ago, I was diagnosed with hepatitis c. I felt the way you do. I was shocked that I might actually be mortal. Since I was diagnosed, I've had fifteen years of very good health. Now I'm treating - I'm almost on week 32 now, and I will do 49 weeks of treatment in total. The treatment seems to be working well.

Hepatitis c is usually a slow disease; you can live a very normal life with it. You should never drink alcohol, and you should try to live a healthy lifestyle. It's not a death sentence. Your doctor will advise you if you want treatment. Take it one day at a time. It's really ok.

Bob

[NYgirl]

That's great advice that we should always remember to give to people who have been diagnosed - and it totally zipped over my  head to even advise not drinking a drop.

Thanks for a great reminder. Sometimes I get so stuck in the nitty gritty of the disease that I forget the most BASIC of things!

[can-do-man]

Flguy is right, no need to panic. Good luck to you

[strator]

Hey Bob- off topic, I spoke to the nurse from the VA group. She suggested tat some of the people treating there have used a Camphor & menthol based prescription for the itch. I'm trying to get my dr to prescribe it. The itch has turned into a major battle, stealing sleep and any decent attitude. She  didn't know what the name of it was though. Have you used this or know what it might be called?
Thanks,
Don

[friole]

ogreat.  Like nygirl said, we've all been there and are still alive to tell.  It is importanct to know that you can test positive for the antibodies and not have the active virus.  Sounds like your doctor is now going to do the PCR test which will tell if you do have active virus.  As soon as you find out those results (don't panic) and post them here.  It is curable, if you do have the virus. Check out this sight for a lot of valuable information.  You can start with the sectio for newly diagnosed, and go from there.

http://janis7hepc.com/

Strator -- menthol is what gives Gold Bond its bite (and I don't think that helped you).  Camphor - can't you get a little tube of campho phenic (sp?) that you use for fever blisters and try that?  I also think that Zim's Crack Creme must have camphor in it because they say it smells like cloves.  A google search of camphor and menthol came up with Tiger Balm.  -- I think that is pretty readily available in pharmacies.  I am sorry this is lasting so long for you. You aren't wearing polyester, are you? I am convinced that even in cotton/poly blends, as they age the fibers break and poke into my skin.  I have thrown a lot of poly away on tx. Hope it gets better, Kathy

[bobbyullc]

ONE THING YOU SHOULD FIND OUT IS IF THERE IS ANY LIVER DAMAGE. IF NOT YOU MAY HAVE YEARS LEFT TO MAKE A DECISION ON WHEN TO TREAT AND THE DRUGS ARE GETTING BETTER. I WOULD ASK FOR A BIOPSY TO DETERMINE HOW BAD IT IS. YOU ALSO NEED TO FIND OUT WHAT GENO TYPE YOU ARE. GENO DETERMINES HOW LONG THE TREATMENT IS AND WHAT THE CHANCE FOR RECOVERY IS.
DO NOT PANIC OVER 4 MILLION PEOPLE IN THE US ARE LIVING AND DEALING WITH HEP C.

ALSO THERE ARE SEVERAL OF US WHO ARE GETTING FREE DRUGS FROM THE DRUG CO. AND YOU MAY QUALIFY.

BOBBY

[cuteus]

maybe the local state clinic can do the viral load test for a nominal fee, based on a sliding scale.  If not, you can call Quest or Labcorp to find out how much will it be. It can range bt 200-400 bucks.  IF and only IF that one is positive, you then have to schedule other tests to determine genotype and liver damage.BUT  First, get the confirmation that you still have the virus. No sense in scheduling anything else at this point.  You can be one of the 20-30% who cleared the infection on their own.

[strator]

Thank you, I did a search also and Sarna came up. I'll also check on Tiger Balm. I had the  same thoughts about the menthol in TrAGB. It does provide some comfort but only for about 20 min sometimes. Almost good news-Tylenol pm w/benadryl got me some relief last night but only to be canceled by 4 charley horse attacks that nearly brought me to punching holes in the walls. Lost more sleep. On top of it between shoveling from the nor'easter, and working all day on more outside church securiry lights Friday, my finger tips have exploded with cracks again. Hurts to type or bend em. There was a point the other night where I felt like the itch if not resolved could actually derail tx. I had to pace for 1/2 the night, felt like I was gonna implode.
What kills me is I KNOWE HOW GOOD I have it compared to most.  Not the brutal anemia some suffer or other bigger problems.  Stupid itch is consuming me. Last time I talked to my doc, he said 'yeah thats a lousy sx.' He pulled one woman off tx because the rash and itch spread to her face.
I know there's a solution, I'll find it if h doesn't. If it get's in the way of feeding the family through work it might be a problem. In the meantime I wonder where strator's positive attitude has gone. But if I  gotta struggle to 'heal' to really heal I'll fight unless it really starts hurting my family. I just spent a few minutes apologising to my kid for how I've been acting lately. He understands it's the meds, and the itch, but it stinks. Dad feels terribe for me but he can barely walk the last few days. He moans all night in pain. Tougher bird than me.
Thanks again,
Don

[NYgirl]

Strator

Please dont think that complainning about the itch is not as serious a side as the anemia. You know I've had both BAD but...let me tell you equally ANY side when it is happening to YOU is a problem.

The Gold Bond only helps on a long term basis if you use it constantly for about a week - until it really gets rid of the dry skin...if you can OVER moisturize with some really good lotion for a good period of time it will help heal the dry skin which also affects the itch (not just the ribarash)  The menthol does help at first but fades.

Did you try using HydroCortizone .1 where it's really bad?  Sometimes I get itches that are SO BAD that I rip my skin off and until I can find that tube I can't handle it.

The Ambiens...I am going to ask about the new time release version hoping that if there is a little bit more in my system I won't wake up after three hours as well.  I go to bed at 11 and wake up at 2pm every night itching my AZZ off - and cannot get back to sleep. Last night I tried to trick it and went to bed at 9 and I woke up at 12:30 - it was worse.

Since we are on the same week maybe we are having the same problem....

Looking forward to 22?

[strator]

Thanks lady. I just tried some Sarna. So far so good, although I've said that about everything. BTW I believe I'm on shot 23 this week. I'm on the Goofy schedule.
Don

[GoofyDad]

Y'all are gonna need to start keeping your own schedules pretty soon, here. And I'm not all too sorry about that, BTW ;-)
<hr>
I like Cetaphil moisturizer. I get it in a jar because I can apply it more liberally by the gobfull. Forsee has another one, that I bet is even better.

I also have an RX for Clobex ointment. It's like a cortesone on steroids.... har-dee-har - I crack myself up. Anyway, that seems to chase the itchy spots away in a day or two. I mean, I've always got something going on, but it's never too bad. The Clobex came from a dermatologist - she likes to use the strong stuff from the get go. Nip things in the bud.  

Hope something here is of use......

[amommy]

I am so sorry to hear about your itchy rash troubles.  That just sucks.  I have a couple of suggestions, though I'm sure you have tried just about EVERYTHING.  Try Boudreaux's Butt Paste.  It is OTC, but it is for diaper rash.  Also, make sure you are not taking hot showers and that you are running a humidifier constantly.  I KNOW it won't fix the source of the itch, but I hope maybe it will provide some relief.  Also, spoil yourself and make sure you have high thread count sheets on your bed.  You may also want to try a more mild detergent such as ALL free and clear or something like that. I have had good luck with Burt's Bees products.  They have a "baby bee" line of products.  One of the lotions is a milk and honey lotion.  That works well for lots of different things.  I will continue to rack my brain for some other ideas!  Thinking of you.

[Moniker]

Hi Don,

Sorry it took me so long to get back to you; I was out all day.

The liver doctor at the VA gave me something called "Men-Phor" But when I went to the dermatologist, the dermatologist said that "Aquaphor" is what I should use. I switched to the "Aquaphor". Both products seem to help a lot. The "Aquaphor" is the best. I think that any real thick skin cream will help a lot if you put it on once or twice a day.

Bob

[ohgreat]

ohmygosh... thank you everyone for writting.  I dont feel nearly alone now.

today was so tough.  My work is so demanding lately as we work to get this software ready for our client and my life is kind of upside down with this and my personal stuff.  It's been really hard to concentrate, and even more hard to hold back and not post here earlier during the day when i am at work.

I really appreciate all the feedback.  It feels like I've been fortunate to bump into a really close group here and it will help me out a lot not feeling like such a fool.

I guess maybe I could be one of the 20%-30% people, but I dont know.  Why would

NYGIRL: A Biopsy sounds painful and expensive!  im just so scared.  when i was 21 I lacerated my liver.  I drank heavy in my 20's on that.  I stopped for almost 4 years at 29, then started up again last year.  My liver is probably shot!

FLGY: my ALT was 122 first blood test and then 103 second 2 days later.  She told me normal was 20-75 and that mine should at least be around 90.  And they detected the antibody.  Thats really all i got. :(


MONIKER: Oh man.  I completely quit smoking today.  I stopped drinking last Friday when I got the scary call about the high ALT level because Ive always had this terrible fear that I have HepC.  I've really been freaked out and im commited to start living healthy again.  So the treatment is tough?  Because soon I am going to be working from home and maybe it would be good to go through a rough treatment if I have the luxury to do it at home.  oh man....

CANDOMAN: oh...ok... good grief!  :(

STRATOR: Itch?  its going to Itch?  Whats going to itch?!?

FRIOLE: IT's Curable?  when I google it, i get there is no cure or vacine.

BOBBYULLC: Yeah, i guess thats the next step after they test for HCV. :(  I dont hold out much hope for my liver.. ive been pretty rough on it.  Since 4 million people have it, how come they dont just make a cure already! thats 1% of americans that have it!

CUTES:  I do plan to get some insurance, the Viral test is $232.  So all these test are adding up to the cost of a year of discounts from medical assistance program.  I dont hold out much hope that I dont have it, or that I am some 20-30% of people that can naturally get rid of it.  Finding out that I had the antibody and it wasnt just fatty liver has really gotten me down.  should i just expect the worst and be pleasently surprised if i get good news??

Rest of the thread about itching...

OMG WHAT THE HELL ARE YOU PEOPLE TALKING ABOUT WITH ALL THE ITCHING AND BUTT RASH STUFF!!  OMG WHAT AM I IN FOR?


i miss my girlfriend...  i am soooo sad.  :(
but thanks for the kind words.

[PasoPerson]

I have quite a regimen, works great for me, but don't know if you would be the same.  Might be worth a try, because, like you, I was scratching my arms and legs raw.

My hepatologist @ Shands Teaching Hospital, Gainesville, prescribed Atarax anti-histamine to be used "1 or 2 daily, at bedtime as necessary".  He also prescribed Clotrimazole and Betamethasone Dipropionate Cream, USP 1%-0.05%.  It's a very small, 45g tube, so I use it sparingly on face eruptions and other rather new rash.  Twice a day for several days usually clears up problem areas, but I have a hard time being diligent about that.  So when itch starts being severe (forget how I look, only care about how I feel anymore), I use the next product on all itchy areas.

Prescribed years ago, and still swear by LAC-HYDRIN 12% CREAM.  It contains ammonium lactate equiv. to 12% lactic acid, cetyl alcohol, glycerin, glyceryl stearate, laureth-4, light mineral oil, magnesium aluminum silicate, methyl and propyl parabens, methylcellulose, PEG-100 stearate, polyoxyl 40 stearate, propylene glycol & water.  I put it on the really, really itchy spots.  Kills the itch (once your scratched, open wounds quit burning, lol).

And the seven square inches of my body that isn't covered in a rash ... I use Aveeno Daily Moisturing Lotion - but it has to be that name "with Natural Colloidal Oatmeal".  Tube also says "relieves and protects dry skin, moisturizes for 24 hours" ... and it does.  

Between these four items, my body is afraid to itch.  (Seriously, it still itches from time to time, but nothing like before).

I hope this works for you ... God bless,
Carolyn

[strator]

Hope no one minds but I thought I

[friole]

CArolyn, how are you? I haven't seen you post for so long. You are still treating, I gather?  I am so glad.  It sounded like a rocky road for awhile.  Please let me know how you are?

[Moniker]

Hi Don,

   The other thing the VA gave me was Hydroxyzine HCL 25MG tabs. The bottle says to take one every eight hours as needed for itching. The Aquaphor cream worked so well that I didn't use the Hydroxyzine. I didn't want to take more medicine; I'm already taking so many things. If you want the Hydroxyzine, I'll give it to you. When is the next support meeting at the VA? Aquaphor skin cream is available at Walgreens - and they also have some less expensive skin creams which work well too. You need to apply the cream often, and put it on thick. It helped me a lot.

Bob

[strator]

Hey we know what your feeling, but you need more info firs. You'll stress yourself out before you even know the 'ifs' or anything. A fes years ago I had no knowledge of hep c and thought my life was over. What a different ballgame when I got a little knowledge. Still learnin but now see no dark impending doom clouding the long future I plan. o The itch is my side flavor of the week. It'll go away. Some people don't even get sides. Don't stress, get your tests, talk to your doc, ask questions here. You'll find a lot of help.
Don

[cquest]

ohgreat-The shock will wear off soon so just don't make yourself crazy in the meantime, ok? We've all been there and you're lucky you found this place!

strator- The doc gave me a prescription cream called 'Clobetasol Propionate USP, 0.05%' and it seemed to work on the rash. You all know I am the rash queen so if it worked on me then it might work on you!
Cin

[nyhepc]

a beautiful story, happy valentines day to you too, albiet a day late.
while treatment can be so consuming to each of us, there ARE other important things in our lives.  your writings help to keep me foscused.  is better to think about love than anemia!!! :)))  thanks
lorrie

[beamishboy]

strator-thk yu once again for the inspirational posts...glad to see you waxin poetic again...probably not new advice,but,i believe drinkin tons of water& keepin the lotion liberally plastered on,whatever type yu chose-works for me...Don,i always 'preciate your writing,yu make treatmnt so much more DOable-thank you!!!!!
Ohgreat-yu found the best support forum ;unfortunately,hepc is pretty much prerequisite-hang in there;read some archives-gain knowlege,strength from the brave,smart,funny people who just keep sloggin on;we will help you out of this swamp..GOOD LUCK ALL

[friole]

Yes, Hepatitis C is curable.  If you read this forum and the archives, you will find posts discussing SVR - sustained viral response.  Most forum members post their 3,6, and 1 year results post treatment.  I am not sugar coating it.  Everyone does not clear. However many can and have.

[strator]

Hey thanks folks. Interesting variety. i will probably go in for my monthly cbc today so I plan to pass some of these suggestions on to my dr. Very interesting that looking up one of the meds pasoperson mentioned said...itching and inflammation can be caused by swelling of the blood vessels due to things released by our immune system. I have to go back and see just which one it is....foggy today. The Sarna worked pretty good last night til I went to bed. Seems to get worse at that time, maybe cuse the system slows down? I'll let ya's know how it all works out.

Bob-thanks. I believe the group is the 4th Thursday of the month. I have to call there so I'll try to find out for sure.
The Sarna worked pretty good last night til I went to bed. Seems to get worse at that time, maybe cuse the system slows down? I'll let ya's know how it all works out.
Don

[NYgirl]

NYGIRL: A Biopsy sounds painful and expensive!

Nope it's not painful AT ALL believe it or not...it's nerve wracking because you are of course SURE it's going to be a killer but NOTHING!  Your liver doesn't have nerves like that - the lining around it does but NOT the liver. It's such a quick thing too.  Ask around in here and you will find out that everybody who was in a total PANIC in here will tell you it was a PIECE OF CAKE!  Honest.

I drank like a FISH too. IN fact I'm sort of surprised I left some behind for you to partake!!!  I am SURE that this is the worst thing I did to my liver because well it REALLY REALLY helps to aggravate and progress the disease.  Of course...I probably did enough damamge without the stupid HepC anyway.

You know Inteferon can help to FIX your liver NOT Just cure the disease.  so you have a good chance of being CURED and FIXING a bit of the condition of your liver.

It's WORTH the biopsy to find out exactly where you stand - it's the BEST way to help you make the decision that there is.

You will be fine - there are loads of caring people in here to help whenever they can. Just keep asking questions when you have them.  It helps.

Remember you are NOT alone.

[cuteus]

oh great; don't give up hope, at least two, (maybe 3) people posted last yr that they were positive for antibodies and later came back to tell that the PCR was negative for viral load. Naturally, we have not heard from them since.  They went on with their lives. Hopefully it will happen to you. If it doesn't, you are extremely fortunate to have come accross Med Help. This place was my learning place as well as my lifeline during treatment. Hep c is curable, more so now with the new meds.
Just get the test, and go from there. Don't worry about the biopsy yet. One suggestion, mention that if the test is positive for the virus, you want it genotyped, it might save you taking another test and more money.  If your spendown qualifies you for Medicaid, go for it. There are some states (NY is one) that have insurance other than Medicaid for folks that don't qualify for MA. Slowly unschock yourself, and TRY to relax a bit.  Fear will ease its stronghold as you learn more about HCV.

Pasoperson. great suggestions for strator! I too was prescribed the Atarax and it worked well. Plus, it has other nifty uses, like tranquilizing effects. It is used for delirium tremens, among other things. I also use lac hydrin or similar product, but I find Ulactin a better lotion for me because of the urea component. It brings the moisture to the skin surface where it is kept by the other ingredients. It also has lactic acid.
over 30 yrs ago, I was prescribed both the lactic acid and the urea in the skin compounds I used. It saves my skin from scaling and itching from dryness. great suggestion, and I hope others can benefit. I buy mine online for only $12 a bottle and free shipping if I order certain amount. I order 6 to 7 bottles at a time.  I tried many things, like Keri lotion, when I was a child and they always left greasy marks where my skin touched furniture. With Lac hydrin and ulactin that does not happen.
stay well

[PasoPerson]

Hey, I am still hanging in there, for sure.  I am a stubborn cuss and WILL beat this one way or the other.  Initial VL was 1.3 million.  

Won't get into long story, but at 24 weeks I was a non-responder to Inteferon.  VL dropped to 49,000.  Better than not at all, but not enough to continue w/Inteferon.

I am now on "consensus" Infergen, daily shots.  Also still taking my 5 Ribavirin daily.  I thought it would be terrible, but so far so good.  It's only been a week, we will see what's coming.  GREAT IDEA - Forget who suggested it, but called specialty pharmacy and told them I needed to inject with THE smallest needle possible, like maybe neo-natal.  I got it and cannot even feel the injections.  Y'all remember that if you have to go to daily.

My PCR will be done every 4 weeks for at least 12 weeks.  Depending on my response, and how I'm handling daily stabbings, I will continue to one year with daily shots OR stop all meds and wait for a clinical trial for slow/non-responders toward the end of this year.  

Sides so far include losing about 80% of my hair ... now can appreciate what folks with bald heads go through in winter.  I'm freezing without a hat!  And the ever loving riba rash.  Those are the two biggies right now.  Oh, Procrit of course, and my best friend Paxil.

I'll try to keep you posted, feeling better now.  You are right, it was tough for awhile.  Learning to pace myself was a big breakthrough.  When I'm tired ... I QUIT.  That was my mistake before, trying to push and get more stuff done than I was capable of.

Thanks Friole for asking about me.  I've missed you guys here and will try to continue sticking around.  Prayers always appreciated.  Prayers from me to many of you have been constant.

God bless -
Carolyn

[miss moneypenny]

hi,

you've had some excellent advise so far, and it really is true that we have all been where you are now, and it is not the best seat to be sitting in, but it really does get better - even if you are not one of the 20-30% who clear on their own, you will get through it. You just need some time to get informed, get results and get your head around it. We are all here for you and we know how you feel.

Take care and try and take it easy, and by the way I drank plenty for years before finding out I had the virus and was sure that my liver would be shot, but had very little damage.

xx

[strator]

Awesome. I got home from taking Dad to the VA Hospital(urinary infection), was running late to get my cbc but junmed on here to write down the names of everyones suggestions. Had missed paso's Atarax this morning(was looking up creams)but saw cuteus' post. Wrote it down put in pocket. Ran to drs for cbc. The nurse says so how ya doing. I told her I'm living on an hour or 2 sleep a night rom the itch. First words out of her mouth-Atarax. The other nurse uses it for her kid for a skin condition. Pickin it up tonight. Thanks, if I finally sleep I'll dream some good thoughts your way.
pasoperson- wish you the best on the dailies. My 'consensus' is you're a true warrior.
Be Well,
Don