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Avatar universal

Wht symptoms did you have before treatment?

Hi all - this is my first time here. You all sound very caring and knowledgeable. I was just dx this week with Hep C. Having symptoms for a long time that no doc could figure out. Do any of you remember any symptoms that you have before you were dx.

Also, any advice for a newcomer? Especially when it comes to correct information from doctors and knowing what to believe. I've gone through too many docs just trying to figure out why I feel so terrible.

Thanks for all your help. I guess I'll be around here for a while - say a year! God bless you all!
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Avatar universal
Hey Everyone,
I wanted to know if any of you experience joint pain. I had an anti-nuclear antibody test done and it came back abnormal. I was told it could be for many reasons but just wanted to know if joint pain is common. Thanks!
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Avatar universal
I have had "weird" symptoms for three years, increasing in duration and intensity. All the doctors I saw, including a gastro, thought I was a hypocondriac and anxious. Every appointment I went to I would take a list a mile long and they would shove it back at me with disregard. The symptoms include:
legs aching, rash on face, throat tight, extreme fatigue, nausea, joints aching, eyes feel like they have sand in them, can't sleep, aches and pains in back by shoulder blades, dizziness, and the list goes on and on. I have spent so much time and money trying to figure this out. Finally a new (another one) internist says, "Let's check for Hepatitis also." Wow! I want my money back from all those rich docs. I can't tell you how frustrating and scary this has been. I feel like I've be on tx for three years already. And I still have to wait until next Friday to find out my viral load, genotype, etc. All my doc said about the first results were that the virus was very strong. Great. I could've gotten it 30 years ago when I was young and stupid or within the last 12 years when I needed 5 blood transfusions. All I know is I feel absolutely horrible all the time now. This just isn't any fun any more.
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Avatar universal
Hepatitis C Symptom

Many people who are infected with the hepatitis C do not have symptoms. In fact, patients with hepatitis C do not develop symptoms until they have progressed to advanced cirrhosis of the liver.
The following hepatitis C symptoms could occur:
o Abdominal pain or tenderness (right upper abdomen)
o Aches, fever, chills
o Ascites(buildup of fluid in the abdomen)
o Bleeding varices (dilated veins in the esophagus)
o Fatigue
o Itching
o Jaundice
o Loss of appetite
o Low-grade fever
o Nausea and vomiting
o Stools that are pale or clay colored
o Urine that is unusually dark
For more infomations visit

http://www.inteligencehumane.com/hepatitis-c.html
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Avatar universal
What makes you think that your dad has hepatitis?  These don't seem to be symptoms of hepatitis....Hep usually if any symptoms at all makes you tired.
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Avatar universal
hey honey,i was reading that one person that had side effect from tx,was having riggors and chills and high blood pressure from the medicene that is why i thought my dad might have hepatistis.
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Avatar universal
I want to find out about riggors and i stumble on to your forum and i am glad i found it because what i have read leave me to believe that my dad has some type of hepatitis.

If some one could help me it would be great.My dads syptoms are in the early morning he will get the riggors that shake the bed and the chills and his temperture will shoot up to 104 and his blood pressure one time jump up to 200 and then it will go back to normal.If any one has had these syptoms please let me know because the doctors can't seem to find out what wrong.
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132578 tn?1189755837
He'll remember that for a long time , but never more than the first time he steps in it and Dad's not around to help him clean it off of his shoes. (even though as fathers we stand by waiting for the inevitable "**** clean-up call)

Turn the lights off when you leave ,
but not before navigating through the piles of wisdom we all left laying around here today.

Good night
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Avatar universal
Ballerina
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92903 tn?1309904711
Welcome to the nut house. Sorry we meet under these circumstances. You've found a great place to hang out and learn about your diagnosis. We've got Ice Cream experts, bowel experts, female fish doctors who only shave their head, and guys who wear beekeepers bonnets to swim in the ocean. Oh and some folks who realy know their stuff about this treatment in case that's what floats your boat. It's a trip.

Someone should be by to push psylium husk and aloe vera shortly. You'll love her!

To answer your question, I was pretty much asymptomatic till my liver started hurting. I've done the treatment and now it doesn't. I like that.
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86075 tn?1238115091
what are you doing up so late? thought you were done with treatment and could sleep like a lil baby...or is watching those Girls Gone Wild all night commericals the only Tx habit you can't break?
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92903 tn?1309904711
But now I don't need to sleep all night!

I was out to my favorite town of fairfax for some music. What's up with my favorite poster?
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86075 tn?1238115091
oh, I betcha your favorite poster was that old Farrah Fawcett one, or the one with Raquel Welch in hairy drawers...you were prob a pretty excitable kid I reckon...
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92903 tn?1309904711
<b><i>Were?? I'm not dead yet!</b></i>

BTW, You can get the Farah poster on ebay. Don't ask how I know that off the top of my head.

nite-nite time.

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132578 tn?1189755837
Hi Ballerina ,I cant believe this!!! I was young and stupid once too!!!!and now I'm not young anymore. There are a whole lot of us here that were young and stupid and I can think of no better company to keep than this group of once young and stupid people.

I was dx in fall of 2004 , exposed in 1975 , HCV 1a ,initial VL 2.17 million , bx grade 2 stage 3. Tomorrow I do shot 11 of 48.
I think  , for me , one of the good things is that time is flying by , thats generally not good when you are our age , but I cant hardley believe its been 11 wks already.
I think I can actually say I never had any symptoms at all. Nothing ever really seemed to out of the ordinary and I was in what I considered pretty good health. A chance blood test started this wonderful roller coaster in motion.
You seem like you are dealing with it pretty well and that will go a long way in helping deal with the tx. You mentioned you have some experience with depression and I assume anti-depressants . They will probably play an important role in your treatment. The meds most of us are on disrupt production of seratonin and it becomes quite easy to loose your sense of well being while in tx.
Its possible if not probable that you will develope anemia from the Ribavirin and if not dealt with swiftly it will make this already difficult task much worse. Many of us are dealing with that very problem , but there are "rescue meds" we can take that are a God send. Talk to your doc about rescue meds ahead of time and find out what his tx program is for dealing with the anemia.
It wouldn't hurt to discuss it with your insurance company  too just so you know where you stand when it comes to getting the meds approved .  As you have found while reading , there are some wonderful , caring , intelligent people going through the same treatment that you will and they have a wealth of knowledge in dealing with the side effects , both physical and mental. There really is so much to learn , I learn something new everytime I come to this site. Knowledge of whats going on in your body and taking an active role in your treatment will keep you from feeling like its out of your hands.
I have to shut up and get off of this PC.
God bless you and good luck , visit your friends here often
and I'll keep an eye out for your posts. Good Night.
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Avatar universal
I think the people close to me would type me as an A, but I don't know what I am. I have to have things set in motion or I am truly at wits end. Once the biopsy was scheduled I felt a tremendous relief. I knew that the process had officially begun and that helped a lot. For the last month I have been watching my enzymes trend upward and I knew they weren't going to normalize on their own. And I was a bit angry that things weren't started sooner. But, I have to remind myself that this is a large clinic that has been doing liver transplants longer than any center in the world and I know they have a lot sicker patients than me and I realize my enzymes weren't soaring so I felt it wasn't a run away rejection. But, as I said in an earlier thread, there's no pain like my pain, and I wanted immediate attention. Once I screamed loud enough I got the biopsy the next day. I'll tell what's a weird state of mind: hoping for rejection. Karen was asking me how it could be anything else and I just said - hey, it could be HCC - how do we really know? It sure looks like rejection but until the sample is looked at we don't know. So I am hoping that I have a mild case of rejection. I never thought I would say that. Thanks Ina for thinking about me. Mike
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Avatar universal
ballerina,
Welcome to this site. It was truly a lifeline for me as I struggled through the early days of coming to grips with all that hep c brings with it. I echo the thoughts of others: Learn all you can, read and understand your labs/bloodwork and keep copies. Know your options, be your own advocate, and try to stay positive.

Mikesimon,
I hope too, that it is a mild case of rejection, if that is the best you can hopr for. I'm so sorry for your problems and will keep you in my thoughts and prayers.
Lauren
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Avatar universal
"ballerina says: any advice for a newcomer? Especially when it comes to correct information from doctors and knowing what to believe..."


Welcome the Hep C ballet company !

Regarding hep c symptons before being diagnosed. You will probably get a whole range of opinions on this, but just remember, lots of people have a whole host of unexplained symptons their whole life and most do not have hep c. Those that do will sometimes attribute those symptoms to hep c when indeed they may not be related. Of course they could be related but it's very hard to tell.

About doctors. Yes, it can be frustrating. It seems like they spend two minutes doing a diagnosis and the majority of time treating you based on that diagnosis. I really think they have it backwards. And some say, it's harder to get a doctor to change his initial diagnosis than a leopard to change his spots :) In fact, sometimes it's easier if you don't have faith in a doctor's diagnosis, just to go see another.

My advice with hep c and doctors is to see a liver specialist who are called hepatologists. Most general practioners and many gastroenterologists simply do not have the training, experience, and treatment base both to evaluate your condition, and to treat you in the most effective way, that is  if treatment is actually warranted. I saw three heapatologists before deciding whether or not to treat, and while some may disagree, I do not consider this excessive for such a very important decision.

In addition, try and do as much independent research as possible,if that's something you feel comfortable with. Just be very careful of your sources, and generally avoid any web site or  source that is trying to sell you something.

As far as discussion groups like this, they are also a great source of information, as well as support. However, there is also a lot of inaccurate information in all discussion groups, including this one, so you have to be very careful to check and double-check everything you read -- especially when you're new to this and have no context in which to place people's comments. I would NEVER make any important treatment decision based on anything you read on the intenet without first checking it with multiple sources including a liver specialist. You might also check other web sites like Janis and Friends http://janis7hepc.com/ and Hepatitis Neighborhood https://www.hepatitisneighborhood.com/ for additional information and also for alternative points of view. As you will find, different discussion groups have different personalities, and sometimes it's better to sample them all.

Hope this finds you relatively well and up and dancing again soon.

-- Jim
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131817 tn?1209529311
I had symptoms like others, extreme fatigue, depression etc. The couple I didn't realize were the skin problems. I had this awful stuff on various parts of the body that seemed like ingrown hair. I would not go away. On top of that I had lichen plantus, which is HEP C related. That went away with script cream. When I started tx the skin lessions I have had for over 3 years started to disappear!  I have scars from picking at them, but they going away! I couldn't wear shorts it was so ugly.

I haven't heard anyone mention this one (don't know if it has a name). Maybe someone else has heard of it?

Started out (after initial diagnoses and problems from getting it) with no symptoms going for 5-6 years at least.
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Avatar universal
Symptoms....symptoms...ah yes...where do I begin? Tired, very very tired...I can't keep up w/ most little shopping trips or long all day treks to the city...I need to sit down and rest or get something to eat because of my low blood sugar...then the dizzy spells....I'm sort of having one today but not as powerful as usual, just a queazy slightly 'boat like' feeling...then the rashes...yes the rashes...and the stomach pains...BUT keep in mind that not all symptoms point to HCV, I have Barretts Esophagitis and a 'markedly enlarged stomach' which causes delayed gastric emptying so my stomach and the RUQ pain is from that usually, so not all RUQ pain is liver related...my liver is in fabulous condition oddly enough...

And welcome to the forum...I was a pretty frequent poster for a while and then just sort of haven't been posting lately...I think it was the religious talk that turned me off...but anyway, there's all kinds of folks in here so hold on, it can be quite the ride!
Cin
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Avatar universal
Thank you so much for all your well wishes and great advice. My mother died from cancer in 1988 after seven years or symptoms and doctors telling her she was a hypo. She had us do an autopsy and the cancer was everywhere. She was 60 years old. Very sad. So I don't have much trust in the medical industry.

I do feel comfortable with my internist. When I saw him last week he immediately referred me to a heptologist (is that how you spell it? - guess I better learn!) I am fortunate that I live close to one of the best teaching hospitals in the nation. Top in liver transplants (hopefully won't go there).

I really appreciate the humor on this site - it does so much good to laugh - great medicine!

Thanks for the encouragement about my son. We'll know Monday.

God bless you all! I already feel a member of a very special family. Thanks.
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86075 tn?1238115091
Hi, welcome, what a pretty handle, I used to take ballet myself...back in the paleozoic age when I was a kid, ha ha! anyway, please don't take this wrong, cause I do plan on treating with conventional meds sometime soon, but I have been using a supplementation and a few herbs to help me with my symptoms and they help "a lot."

For me that is, some people say they havent' helped them much, (but then you never know just how they approached it, my editorial there)...but I like to think I know what I am doing because I've consulted with many docs and nutritionists, etc pertaining to this...I am not advocating that you do this, just telling you that this is what I do for myself for the time being before treating, and I should say I have little liver damage, I'm a stage 1 with pretty good labs...

Also, I'm sure you know by now that conventional interferon treatment is the only thing that will eradicate the virus for good, although there are some good therapies in trial coming up soon, which look promising...before you ponder all these questions, please see exactly where you stand in your disease, how much liver damage through biopsy, etc. and all your blood labs, etc....

With me, I'm in the hep c minority of people who experience hep c "flare-ups" for lack of a better word, I know a lot of hep c people and only a few I know manifest their symptoms like this...I can go for like six to eight months with very little symptoms, just fatigue for the most part, and then I get some symptoms that all come at the same time and last for maybe a few weeks...

Increased fatigue, constipation (a bit) a little bit of a fluey feeling but not bad, increased body heat, and this is really weird, but my urine gets a lot clearer (it's always kind of clear because I drink a lot of water) and I need to urinate a bit more then usual, I just don't feel as well as I usually do in a flare up...but like I say, I think my supplementation regimen and my good diet helps a lot with these symptoms, I once stopped everything for 2 and half months, and I really felt sick, sick, sick, nothing like that since...

For the time being, make sure you take extra, extra good care of yourself, if this isn't your lifestyle normally, try to make it so now, even though I realize it's hard for some people not used to it...eat a lot of veggies and fruits and grains, good water...look up a good liver friendly diet...there are more studies coming out that show that a good diet will help a lot in terms of disease, our bodies need all the anti-oxidants and nutrients to help on a cellular level...and get some exercise, etc...

One of the best things though is a real positive attitude, I know that's hard being first diagnosed, but I hope you won't do what I did and waste that first year after diagnosis being so freaked out and depressed, did'nt do me any good and I could of been studying and finding good things out for me to do instead that is empowering...best of luck to you...
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Avatar universal
Hi and welcome. Sorry to meet you under these circumstances but since you're here you should know i was young and stupid once too. Now i'm not and BTW neither of my 2 sons is hcv positive.  It's hard to relax but chances are very slim they were infected. This is one big hurry-up-and-wait game so read and learn and try not to drive yourself crazy.
I had fatigue, liver pain, spider veins that were not hereditary, and who knows what else?
Please post any questions 'cuz there's lots of smart and EXTREMELY funny people here. Sometimes i take funny over smart. It helps. Best of luck to you and stick around.   tracy
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Avatar universal
I was always at a docs office,....stomach problems, pain would flare up so fast I would double over with pain. I remember lying in bed one night all curled up, afraid that I had somehow "poisoned" myself, the pain was that severe, and that scary, and I just couldnt make sense of it.
I also went bask and forth with constipation, then the runs, I also have GERD, I do not know if that exacerbated the whole thing or not, I was taking my nexium at the time.
I lost 30 pounds BEFORE going on tx (treatment) because I was not able to eat one thing with out immediate stomach pains, hey like a beaten dog, I just stopped eating, it was easier to starve than to go through the pain. Stupid I know,...but all the docs just treated me like I was some kind of hypochondriac, its embarrassing ya know.
Anyway, welcome to the forum, we have alot of good people here, never take anything as "gospel" always do research on your own as well.
lilmoma
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Avatar universal
I had right upper quadrant pain and I had no energy whatsoever and always felt run down.  My doctor thought it might be gallbladder and ran 2 different tests on that.  Then, ran LFT's and noticed that they were elevated.  He ordered a Hepatitis panel after that and it showed positive to HEP C.  That was in 1992.  But, back in 1985, I had a test done at one of the DOC-In-A box clinics and was told that my results looked like at some point in time that I'd had some type of hepatitis non-A/non-B.  That doctor told me that it was nothing to worry about, sent me on my way and did not caution me about drinking. So, I still drank.  Since 1992, other than an occasional glass of wine early on, I have not drank.  I used to drink like gobs of hard liquor and wine.    By the way, I had also tested positive for high levels on my CMV titer and my EBV titer.  I believe that M.K.Andrew also had those tests and had the CMV.  Well, that's about all.

Susan
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