New to HepC & Def. Scared!!!

Greetings to all you Brave individuals that have already been thru this journey, are still going thru it or have a loved one that is going thru it. I just found out about a month ago that I have Hep C Genotype 1. According to my Gastroenterologists this is the most common type but also the hardest to treat.

A little about me. I'm 38,M and usually weigh around 155lbs. but now I'm down to 139 with no loss of appetite. I have an ultrasound, endoscopy & colonoscopy scheduled for the 28th & 29th of this month. So far this is the results I've gotten:

Albumin 4.5
Bilirubin 0.5
Bilirubin Direct 0.4
Bilirubin Indirect 0.1
Alkaline Phosphatase 75
Protein 7.5
ALT (SGPT) 158
AST (SGOT) 103

My Dr said he would go into more detail after the other procedures are done but has left me in the dark until then. My symptoms started out as muscle pain, extreme fatigue, and was 1st thought to be due to Hyperthyroidism but then the Hep C was discovered. Now I have a new symptom that just started about a week ago. My left eyelid twitches every couple of minutes for a few seconds the whole day. Thanks to your resources page I found out this could actually be contributed to the toxins in my blood not being filtered out properly (Hepatic Encephalopathy).

After these procedures are done and I'm deemed healthy enough to have the liver Biopsy done then I will probably start Ribavirin/Interferon/Telaprevir...Which out of the 3 I'm really scared of the interferon treatment. But I have a 7 year old daughter and I owe it to her to do whatever it takes to extend my time here on Earth with her.

But this new symptom eye twitching) really has me worried since it involves toxins going to the brain. If anyone here has any similar dealings with this symptom and can explain to me a little more about my test results it would be greatly appreciated.

Also, I'd just like to say that I've been looking at many different support websites and think I've finally found a place to call home. You guys(and gals) seem really caring and at this point in my life it's great to deal with people that are not ignorant to my disease. I pray that anyone that has any involvement with this disease, either personal or a loved one, has a speedy recovery.

Bigedawg

Post Edited By Moderator (hep93) : 5/17/2013 10:30:31 PM (GMT-6)

          hey bigedawg,  welcome..i am also geno 1 and have been dealing with this for 40+ years.  i just finished treatment with the int/rib/telep.  i did 48 weeks of tx and have been clear of virus for 15 months. 

            your dr needs to do imaging and biopsy, to go along with your bloodwork.  this will give ur doc the info he needs to start tx, or wait and monitor. 

           this is a very exciting era for hep c.  new tx are doing great in clinic trials and some have filed to the fda for approval. 

           let me know how your biopsy goes          barry

Welcome to our forum Big Dawg and yes we do care... eye twitching can be from a number of different things.. stress can cause it like was mentioned. You definitely are in the right place.
Sandia

Hi BD,

Welcome to the forum.

I help moderate here and we are glad you found us.

Connie, our fearless leader has been in the hospital but will chime in when she
Can. She is almost 2 years post transplant for Hep C and liver cancer (HCC).

I am caregiver to my partner who is 2 years post transplant for Hep C, alcoholic cirrhosis and HCC. Mike was fully decompensated before transplant and really sick.

Connie was not so sick but her tumor was growing rapidly ... At 5 cm they take you off the tp list. So she luckily made it in under the wire.

Dany has autoimmune hep and is doing well.. She chimes in to help those folks.

Take a good look at the articles in the Resources folder.

Ask your questions and be sure to try the search feature -- put a symptom or test or a person,s screenname -- and read the old posts

Best,
MamaLama

BD

You need to think about the anti viral treatments for HEPC as if it is a chemo with side effects.

If the tx works, you can be free of the virus forever! That is a huge motivation as HepC causes some pretty awful symptoms, can cause HCC, and death without transplantation.

The sides are worth it. Hopefully the new drugs are easier to endure and that you get into a program and reach svr - sustained viral relief -- without side effects.


Best
MamaLama

          big dawg,  side effects are different for everyone.  some people cruise right thru tx and some suffer.  most of what you read on the internet and forums are the troublesome stories. 

          in the mean time start reading all you can.  knowledge is power!!  before starting tx ask your tx dr about side effects and what there policy is for staying on top of blood disorders, rashes and gastrointestinal issues. the flu like sx are manageable with small amounts tylenol on shot days and the following day. always run anything you take by your doc.  there will be anxious days and some depression.  i thought i could handle the depression, because the last 2 times i treated i was fine.  well i started an AD this time and it really helped me stay calm and gave me a can do attitude.  

           there are no dumb questions here.  anything that concerns you , post it and tell your doc.        barry

Welcome Biggie,
I am themiz. My husband is themister. Sorry to hear of your dx, but glad you found us here. about the eye twitch, glad you mentioned seeing that info. I need to look into that info. Themister started with dry eyes that turned into eyes not staying open, lots of blinking, etc. It was dx as Blepharospasm. Curiously, this started 1.5 years post his first treatment (failed) for Hep C geno 3a. I recently mentioned that I have a feeling this is related to his liver or the treatment. It is not a twitch, this is slamming shut eyes. It may be as dx, yet unrelated, but thanks for the heads up on eye twitch. Something else to research:) Hugs, big welcome, and take care of you. themiz

Hi Bigedawg,
I am new to this forum 2. My husband has hep C. Stay strong, thoughts and prayers to you.

Hey, Dawg, and welcome to the forum. Sorry I am late to welcome you, but as MamaLama/Carol mentioned, I was in the hospital Mon. and Tues. for yet another surgery (I've had many related to post-transplant problems.)

Actually, the treatment with the worst side effects is the Telaprevir. I was headed to the 3-drug tx, but now Mayo has decided to no longer prescribe it as it's too harsh on patients and many were dropping out. So I'm waiting for the next thing. It's very important to get treatment and beat the hep C. It causes so many problems, progressing slowly but surely. It CAN cause liver cancer, so your family needs to educate themselves. It is also the biggest reason for liver transplant in the US today.

I've never heard of HE causing eye twitches. However, I don't think you would be able to articulate all that you did if you had HE. So I wouldn't worry about that now. HE is more of an end-stage liver disease problem.

As you get your results, please let us know. about 5 mos. ago, I was prescribed a mild antidepressant, Lexapro, for situational depression (all those surgeries!) I had planned to start on one anyway, prior to beginning treatment. I didn't like the idea because I'd taken ADs decades ago and hated the side effects. The doctor assured me that Lexapro was entirely different. I don't notice a huge change, but I believe it's helped me cope much better with 2 more surgeries and the death of someone close to me. So I would recommend an AD before you start treatment, since depression is a common side effect.

Hugs,
Connie

TR everyone's experience is different. Every person here has a different pathway. As has been said here before liver disease is not for sissies. There is a lot of information here but remember not all applies to you. Take a look at the information under the tabs. We offer support and encouragement.. we are not doctors but can offer answers to some questions because of our own experiences. Hang in there. Sandia