Hep C Discussion Forum

Tig · Admin

RE: Newly Diagnosed

tonib · Senior Member

My first biopsy was fine.....just had to take it easy for a day after, the 2nd....well lets put it this way.....OUCH!! And I was in PAIN they actually had to give me an xray to see why I was in so much pain....but nothing showed up...I think they hit a bone, or a muscle for the 2nd. The pain lasted about 7 days but it got less and less each day.

The first one I had it was lower and more in the "fatty" part of my belly, the 2nd one was up higher near the rib cage....don't know why the 2nd one hurt so much.

But it certainly did not kill me.....I guess after 3 children delivered natural childbirth....if that didn't kill me??lol

Member

Ok, cool. Mine is being done as a same day surgery. I feel reassured now :) Do you by chance know success rates on clearing 2b? I know many factors play into it, so just in general.

Tig · Admin

247 wrote:
So im having a biopsy on the 24th. Is that a painful experience? Do they give you any pain meds or sedatives for the procedure?

I have had three and I didn't find any of them painful. I guess it depends on your definition of pain though. You'll have some localized discomfort, sort of like a deep bruise. There's no need for pain meds after the procedure IMO. But that's between you and your doctor. I think the worst part of the procedure was getting psyched up for the procedure. After the first one I knew that it was a fairly easy process and didn't let the following two bother me. My most recent one in April was done as an outpatient at my local hospital, some are done at walk in surgery centers too. The did it in the radiology department, using a CT scan to determine proper biopsy needle placement. They started an IV and gave me some Versed, which knocked me out nicely! It takes about 20 minutes, but you don't know about any of that. As soon as they put me in the CT, they give you the medication and POOF, you wake up in the recovery room. They monitor you for an hour or so and then take out the IV. You will be required to have someone drive you there and back, no exceptions! It took longer to explain it than it took to do it, lol! Don't let it bother you, it's not difficult to get through at all.

Member

So im having a biopsy on the 24th. Is that a painful experience? Do they give you any pain meds or sedatives for the procedure?

rotting to the core · Member

247

You have been given some great insight's, as far has the mistakes made with your labs...I have had to revisit my own and see where I had been mistaken. I can't believe a Hepa would make such a mistake, if so I would report him.

As far as SSDI and SSI goes I am fighting that battle here in Nevada, 2nd appeal, the info I was given, when it comes HCV or HIV or even cancer patients, they ( SSA ) slow to act on these cases, the reason is we recover, it is no longer a automatic death sentence. So they are playing a wait an see game.

Welcome to the forum, I dont get here much but when I do I am glad I did.

Timothy I

PS dont allow yourself to become overwhelmed, the information can become mind boggling, some times personal experience helps wade through it.

mallani · Guru

Hi 247,

Personally, I would be looking for another Hepatologist. Making a mistake in ALT and VL is unforgivable IMHO. Why did he suggest 9 months of treatment? For Geno 2, the standard course of Peg/Riba is 24 weeks. Trials have found no difference in SVR between course durations of 24 or 48 weeks. There is some debate about the dose of Riba. The standard dose of Riba used to be 800 mg/day. However, most studies show increased SVR using weight-based Riba (1000-1200 mg/day). Geno 2 is easiest to treat, and, at your age, SVR rates of >80% should be expected.

Sofosbuvir/Riba should be available in 6-12 months. The SVR rates may be a bit higher and side-effects may be less, but whether to wait is up to you. There will be a high demand for Sofosbuvir when it is approved, and the cost may be a factor with your insurance. Good luck.

Member

So ihad my first visit with the hepatologist today. very underwhelmed to put it lightly. I asked about my alt because it was the only elevated enzyme at 69 a couple months ago. He said it was 41 now, great news right?! Asked about VL, was told it was around 100,000. Also great news! Well, i asked for a copy of the labs..... alt was 86, ast 41, VL 15M+. How could he possibly get it so wrong?! He ordered ultrasound and biopsy as expected, so thats good. Found out im a 2b, he recommended 9 months dual therapy with a 60-80% "cure" chance. Any thoughts or suggestions? Isnt there new meds in the works for 2s and 3s where patients are responding more favorably?

Tig · Admin

I would consider seeking another opinion before committing with this hepa. Those remarks would concern me too. 100K and 15 Million is a significant difference! There are new drugs on the horizon but I'm not versed on those genotypes and the new treatments for them. We'll find out tho! I believe the current course of treatment for GT2 utilizing Peg/Riba is 24 weeks, my original agreement of 36 weeks was incorrect.

-- Edited by Tig56 on Tuesday 10th of September 2013 03:42:09 AM

Member

I know my diet contains way too much processed foods, and fatty/sugary foods. I'm a big coffee drinker, and used to take sugar in my coffee, but have since switched to Splenda. Artificial sweeteners probably aren't the greatest thing either. So now that I know what NOT to eat, does anybody have any ideas on what to include? Throw anything at me :) I too, like you Lisa, feel that smoking causes me many harms. I can tell my body is strongly advising me to stop. Every morning I wake up with eyes red as you could ever believe, but they don't itch at all, so it doesn't feel like an allergy. *shrug*. I used to drink and do drugs, but have been sober since 4/26/10, I could also tell my body was telling me not to drink, so I was probably HCV+ even back then.

As for the all oral meds, these are in the works now? Do they still include interferon?

Very encouraged by all of your replies smile

Loopy Lisa · Guru

Hi again 247,

I don't use sweetners either as they can be just as bad I heard. Just make little changes here and there and before you know it you will start feeling better. Regarding red eyes, I had exactly the same, I used to use eye drops some days as I looked like I had hayfever or something. They have generally cleared up now.

The new meds that are coming on the market that are interferon free are for genotype 2 and 3 due at the end of this year, beginning of next year. They are already far into trials for genotype 1 and 4 for an all oral regime, and it is expected within 2 years no genotypes will require interferon injections. If you are OK with interferon the odds of curing now are also very good, but I myself cannot stand needles (slightly phobic) so I would rather chew off my left foot. :P

I guess processing everything takes time and changes won't come overnight, but don't give yourself a hard time either if you can't kick certain habits. With all the new meds coming out, most of us will be cured and won't have to worry so much about our health. Saying that, choosing to live healthy for life can never be a bad option ;)

-- Edited by Loopy Lisa on Tuesday 3rd of September 2013 05:22:26 PM

Kellie · Senior Member

Hi there 247,

I've read lots of books over the years on healthy living and nutrition. One of the most basic books is called "Back to Eden" by Jethro Kloss. It was written in 1939, but the info still rings true. Lots of good info about lifestyle and nutrition.

There's another called "Prescription for Nutritional Healing" . It's a great reference book and has a great section on nutrition.

It's never too late to make small changes. These, over time, add up to feeling better and being able to enjoy all the things life has to offer.

I didn't start regular exercise until I was about 36 or 37, so like I said, it's never, ever too late smile best to you

and... yes, follow your gut when it comes to your body. In the years before diagnosis I found myself gravitating towards things that would be good for my liver - even without knowing I had the virus.

-- Edited by Kellie on Tuesday 3rd of September 2013 04:53:14 PM

Matt Chris · Guru

Hey 247

Check out in General Discussion area of the forum for the topic "Foods that your liver loves" this can help With some food choices.

Also stay away from fried foods and bad fats, try to find ways to include Avacado in your diet it's a perfect liver food.

Matt

-- Edited by Matt Chris on Tuesday 3rd of September 2013 05:11:10 PM

mallani · Guru

Hi 247,

Welcome from me, as well. I had HepC for over 40 years, and didn't really have any symptoms. Biopsy and Fibroscan showed cirrhosis back in 2008, and I was lucky to be offered Rx with the Victrelis triple for 48 weeks. The treatment knocked me around, but I'm lucky in that I have cleared the virus. I've developed some arthritis which may be Rx-related but that is gradually improving.

You've been given good advice by other Members. Ah, the smoking......... Unfortunately I still smoke ~5 cigs/day. I virtually gave up during Rx, but I'm too stupid to give up entirely. I have some electronic cigarettes from London that I'm about to try. I really only started smoking when I gave up alcohol in 1996- it was my feeble protest! Give up if you can. Cheers.

Matt Chris · Guru

Hey 247

Welcome to the forum you have found a good place with warm caring members.

You have allready made some very good decisions, having a Hepatologist to render a helpful guidance is a very good choice. He will hopefully have a opinion on your current status and best future options. At your age it's likely you have time to wait for the all oral Meds. It will be in the next two years that they will be available. As far as HCV trials you also would be a good candidate for one of them, as long as your tests come back in the normal range with no other health issues you should be good to go.

Nows the time to make changes to a healthier life style, quit drinking, smoking and change to a healthy diet.

It does not come all at once but over time it can really help the body and mind to adapt to your new condition.

Hoping the best for you.

Matt

Kellie · Senior Member

Hey 247, all very good questions - The first hep dr I went to for the first 9 years saw my labs & ultrasounds every 6 months, looked at the time I've been infected and my lifestyle (no alcohol, lots of exercise, vegetarian) and always told me I had a low chance of cirrhosis and fibrosis. My current hep doc at Scripps Green in San Diego, at the beginning of this year, told me I could skip the biopsy if I was going to do treatment anyway.

So I skipped it. Triple therapy is indicated for my genotype 1a. My doc was very very positive I would be cured. The treatment is challenging to say the least and it's working fabulously. My starting vl was in the 500,000 and I went und by week 4.

In 2002, when I first found out, my vl was under 100,000. Over the last 10 years it's been as high as 5 million and as low as <100. My symptoms have been mainly severe fatigue, joint pain, foggy thinking and depression. The depression more so now. I believe they haven't even begun to scratch the surface of all the sx this virus causes.

I did it now because of the great medical insurance that I have, a kick ass hepa team and the ability to take 24 weeks off of work. All these factors are not guaranteed for my future. Carpe Diem friend.

Happy to be treated now, 4.5 weeks to go!!!! Thanks for asking. smile I may have waited if I would've known about the insurance thing being in place in the next few years.

I found lots of stuff on the web about hcv, but you must check the dates of the article. There are lots of old outdated things.

Oh yes, your body will be happy when you drop the cigarettes and move around daily - take care!

Member

Anybody have any recommendations about books or literature to read on HCV?

Member

I have some neurological symptoms, but dont know that theyre related. Typically when i wake up im very stiff and have weakness in all extremeties. Also in quite a fog for the first several hours of the day. And tge fatigue, my goodness! Some days it can be downright debilitating, but im sure lifestyle and diet plays largely into that. Ive become quite sedentary, and smoke a half a pack of cigarettes a day. Im sure quitting smoking, eating a better diet, and exercising regulary will greatly improve anyones condition. Hasanyone experienced any skin changes?

Cinnamon Girl · Guru

Hi 247, welcome from me too. Here`s a link to some up to date fact sheets and pdf files you might find useful regarding social security, from the HCV Advocate website. Scroll down to the section labelled `Insurance and Benefits`....

http://www.hcvadvocate.org/hepatitis/living_w_hepatitis_C.asp#2

About having symptoms with Hep C, I`m one who did suffer for many years from quite severe fatigue as well as aches and pains in joint and muscles. I finally did my treatment in 2010/11 and have been in much better health since then. It does vary quite a lot from person to person though.

Keep asking questions, someone will always try to help.

Tig · Admin

There are a few. Use the search function (above) and start looking. I don't know what SSDI thinks about it. It took me 4 separate appeals to finally obtain approval and that wasn't for HCV. It depends a lot on the government. There are times when they approve you right away for anything and then there are the times they refuse no matter what. I had to get an attorney and fight for years. It's hard to say what this administration will do...

2oldman · Member

I searched 'ssi' and found a few. Your results may vary.

I'm 65, been carrying 1a Hep C around for over 40 years with nothing but a bit of peripheral neuropathy (PN) in my feet. Lately, however, the PN has accelerated to the point where my feet are like cold bricks. I'm a bit nauseated as I write this, which, may be the C, but I have no idea.

My latest blood work showed normal AST and ALT. I've been a healthy non-drinker most of my life, so my liver has been spared. As I'm starting to realize, it's not just the liver which is at risk. There are all kinds of mildly annoying to downright nasty symptoms. I'm hoping to hold out for a less brutal treatment than interferon, but I'm not sure I can hold my breath that long.

Member

Do you know of any discussions here regarding social security disability?

Tig · Admin

Symptoms are varied and wide. Some people never have any symptoms, that's why it can go undiagnosed for decades. Some experience persistent fatigue, joint pain, you can find several symptoms. I didn't experience much in the way of symptoms before treatment and after I failed treatment in 96, I went back to living normally, again without symptoms. I decided to try triple therapy this year because my biopsy and some additional tests proved the damage caused by HCV was worse.

Member

Do you have any symptoms from the HCV itself?

Tig · Admin

Yes, I'm currently undergoing triple treatment with Victrelis. My treatment info and labs are listed on my signature (bottom). This is my second attempt at treatment and so far it's going well. My last VL tests done on Aug 15th showed the virus as undetectable! My highest VL was 5 million and lowest was 2 million (before Tx). The triple treatment is long and can be full of side effects, many unpleasant. Depending on your biopsy you may be able to wait for one of the easier courses of treatment. The thought of a 12 week single drug/day treatment is very appealing! Currently I'll be on treatment for 28 to 36 weeks if the VL remains undetectable.

Member

Thank you both for the replies. Tig, did you go through any treatment, if so, what was your experience? It's my understanding that VL is not an indicator of the extent of damage, so I certainly won't work myself up about that. To Kellie, what was the factor that led you to choose the triple therapy, not having been biopsied? I'm happy to hear that you're continuing with the treatment. Have you responded favorably? What were your VL's at their highest and lowest, and which genotypes are you, if I may ask.

Tig · Admin

Hey 247, welcome to the group! Your VL can and does fluctuate and right now your VL is high but I've seen people with much higher numbers. So I wouldn't do a lot of worrying about that. Your AST and ALT aren't that high at all. Your appointment with the Hepatologist will provide you with the direction I think you're looking for now. They will suggest some additional tests, like a biopsy for example. There are other tests available to help determine your liver's overall condition, like an ultrasound and a biopsy. A biopsy is truly the best method of determining inflammation and fibrosis. Here in the USA it's considered the gold standard to diagnose them. I would recommend that be part of your work up and predict your doctor will too. I've had three and they were easy to get through. At your age I think you would be an excellent candidate for treatment. Your liver may be in such good condition that you may be able to wait for the new treatments coming soon or can get on one of the new trials being offered. The advantage of the newer medications is the lack of serious side effects. Honestly, I think your future looks very bright! Keep a positive outlook on everything and you'll be fine!

Loopy Lisa · Guru

Hi 247,

I have type 3 like Jill did, I was diagnosed with Fibromyalgia and all sorts of things until this year I finally got to the real root of the problem, Hep C. I have improved so much since cutting out bread and sugar (imbalance in gut flora) and smoking! Smoking is of course the hardest habit, but the fogs I had are lifting alot. Saying that, I still need to sleep too much sometimes and other times I have insomnia with hours lying there like a baked potatoe.

I actually get the idea a lot of my problems are more smoke related than hep C related, but it's hard to tell, because smoking could aggrivate the condition? All kinds of little ailments are clearing up one by one, bit the nicest is whiter teeth and eye colour. Saying that, it could be the sugar, but probably all combined where not too great for me. I am not bloated thanks to removing largely processed food such as bread and pasta and cutting down on dairy products. I did read that this is a common problem with Hep C sufferers, they don't tolerate too much processed foods.

Exercise is a great way to feel good, it helps me anyway.

I had a biopsy this year, I don't have any liver damage, normal liver ALTS but the top side of normal.

I think Hep C does a lot more than just attack the liver but it is a new disease and they still don't really know why some people react in certain ways and others not. I guess it has a lot to do with out own genetic make-up.

If it makes you feel any better, I was told smoking is not good for you per se, but it is not specifically bad for Hep C. After reading so many people on here telling of giving up drink, drugs and doing everything to help them recover, I thought well I can stop smoking too. Best decision I ever made! :D

I am waiting for the new drugs, so I want to be healthy as an OX til they arrive! :D

There is plenty of information on the site and the internet, but stick to medical info rather than personal tales. :)

-- Edited by Loopy Lisa on Monday 2nd of September 2013 10:51:38 PM

Member

Hello friends! I'm a 34 year old white male newly diagnosed with hep c. After complaining about random symptoms to my primary care for nearly a year, he finally ordered labs that included a liver panel. My AST was in the high range of normal, and ALT slightly elevated at 69 I believe. Hepatitis antibody tests followed and I was positive for c, viral load after that, which was 7,250,000. I was finally referred out to a GI/Hepatologist who ordered extensive labs before I even saw him (first appointment is 9/9/13). I'm sure I will know my genotype then. I'm expecting to be a 1, just because of its high population in the U.S.A.

I suppose I just want to start a discussion with others in my position that can relate, and hopefully build some friendships, and figure out a way to contribute back to those in this forums community.

Any advice, input, direction, guidance, etc, is appreciated! Do you have a viral load this high? Do you know others that do? Would you think I would be a candidate for treatment? I have not been biopsies or had any imaging done of the liver.

Hope to talk soon!

Kellie · Senior Member

Hi 247, and welcome! My alt and ast's were on the high range of normal for years also, even days leading up into treatment. I'm currently on triple tx with 4 weeks to go. Triple is tough and the results are good. I've never had a biopsy. I didn't think it was necessary all these years considering I was always so healthy with great labs and I was going to do treatment regardless. I haven't drank alcohol since 1989 and been a vegetarian since about the same time. I exercise or move daily. I contribute my somewhat good health to these things, even though I believe I was going to have more issues from the hcv as I aged.

There's lots of new treatments down the pipe coming soon. This is a great group. Best, Kellie

-- Edited by Kellie on Monday 2nd of September 2013 05:48:21 PM

-- Edited by Kellie on Monday 2nd of September 2013 05:56:36 PM

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