Hep C Discussion Forum

dustbear · Senior Member

RE: New here lots of questions

Terry · Senior Member

Hi Barnacle Welcome to the board. You will get lots of encouragement here and don't worry most of us have had this for years. I also think I had it since the seventies and am a stage four but just getting on the right treatment and staying the course should get you back on track.

Cinnamon Girl · Guru

Hi Barnacle, welcome from me too. It is very confusing at first, we all understand what it`s like trying to take in and make sense of so much new information. As Tig56 said, you should be able to get copies of all your lab results, and we`ll be happy to try and guide you through anything you don`t understand. It`s a good idea to make a few quick notes when you see you doctor, and try to make sure you get answers to all your questions.

Let us know when you have more information, and just take it step at a time until you have a clearer picture of what your options are. Keep in touch!

Tig · Admin

It's difficult to understand all of that information. Especially when you've got 2 or 3 doctors throwing it at you from both sides! When you have these tests done, remember that you have a right to get copies of those reports. I recommend you do that and keep a copy in your own file. Many times I've been glad that I did. You can also request copies of your old test results. That's very beneficial when determining your progress or history. Keep your chin up and always try to approach this positively. It makes the entire process easier to navigate. Good luck!!

Barnacle · Senior Member

Thanks for the replies folks.

I had a lot of info thrown at me by various Drs so I may not have digested much of it. I do know I have gen 1a and as far as the Fe result that showed up in my most recent bloodwork. As far as the other numbers I will get the Dr to spell it out for me and take notes cause I have no idea what any of it means at this point.

mallani · Guru

Hi Barnacle,

As others have said, we can't give much advice without knowing basic things like Genotype, Viral Load, Liver Function tests and Fibroscan reading.

Could you tell us how Haemochromatosis was diagnosed? Was it from the Iron Indices, family history etc? Obviously this has a big impact on liver fibrosis and HepC treatment. Previously, phlebotomy was combined with SOC for HepC patients, but now it seems essential to try to drop the Ferritin before any treatment. Like Tig, I disagree about Fibroscan being more accurate than biopsy- in your case, I would have thought a biopsy was essential for iron-staining, to accurately show the degree of iron overload in the liver.

Both the haemo. and chronic HepC will hasten your development of further liver fibrosis, so hope you can get both successfully treated. Keep us posted. Cheers.

Tig · Admin

Hi Barnacle and welcome to the forum! I'd like to echo one request made earlier. Would it be possible to provide us with some additional information regarding your disease? We need info like your genotype and if possible, the results of your blood tests. Tests like your CBC and differential, LFT's (AST, ALT for example). You mentioned having had a Fibroscan done, do you know the results (actual reading in kpa)? Was it done a year ago or when? I don't believe your doc was entirely accurate about the Fibroscan being more accurate than a biopsy though. They are getting better but the biopsy is still considered the gold standard when determining liver health and fibrosis. I would get some additional information from a board certified Hepatologist or a board certified Gastroenterologist, trained in HCV management. That is quite important!

We've got others here that have gone through phlebotomy or blood letting procedures that can give you personal information on their experiences. Determining when to treat for one or the other is determined by fibrosis scores and other results as well. Providing those lab results can help us provide better information and opinions. There are new treatments on the horizon, including some recent approvals that are being debated as we speak. Determining your genotype will help determine what you take and for how long. The higher your fibrosis score generally determines length of treatment and can be indicative of actual liver damage. Since your fibrosis score is considered a 3, I would want to seek treatment options now versus waiting much longer. It's a great time to consider it! A Hepatologist is best trained to discuss those choices with you.

Utilize the search function mentioned and if you have any additional questions, please feel free to ask. When you can, please use the New Member section to introduce yourself. You're among friends and I hope we can be here for you as any needs arise! Good luck!!

JoAnneh · Guru

Glad you found this site.
It wS invaluable while I was on
Triple therapy. I had Hep C since around
1976. I achieved SVR this year.
Keep us updated on your doctors advice.
I needed to start ASAP as I had developed
Mild chirosis; therefore I was on treatment
For 48 weeks.
Feeling good these days and so grateful
The medicine worked.
This forum is rich with the latest information
And people just like me and you
Fighting to save our liver!
Treatment is working for lots of people.

Larry2384 · Member

Barnacle,

I am new user and just 3 days into my treatment of Sovaldi and Ribavirin. I doubt that I can answer any of your medical questions but there are a lot of knowledgeable people here who have been answering my questions and all have encouraging words and have made me feel welcome here. Like you, I am nervous about starting this treatment and the possible side effects but so far I haven't had any to speak of.

I believe it was a good decision to join this group and hope you share the same experience. There is a plethora of information on this site.

What genotype are you dealing with? I am very fortunate to have gen 2b since 1974 if you want to look at having hcv as being fortunate. Supposedly, it is the easiest to treat and the most responsive to therapy. My doctor has been telling me for past 4-5 years that my hcv is becoming more active too and my red and white blood count numbers are very low whatever that means. I decided to get treatment and am among the first to get to try the new FDA approved Sovaldi (sofosbuvir) by Gilead Sciences. It was just approved last week and the pills hit the pharmacies here last Friday and I was the very first in line.

Welcome to the group! I can't help much with your medical questions but am here for you if you need encouragement!

Larry2384

newmex · Senior Member

Barnacle, Welcome to the site. You can find tons of advice, experience, and always an encouraging word here. Don't worry, every one is nervous starting out. There are people on here at every stage of the disease, and on almost every imaginable treatment and trial. You can find loads of info thru the search at top, or just post a question, but I imagine most will want some more info, like genotype, viral load, etc. I am also kind of new on here but will do any thing I can for you.
I am on teleprivar ribavirin, and interferon, sucky, but do-able. There are several people on here on some of the latest trials and they sure seem better, but all depends on what you need. Some available now and, like in my case, the ones I am looking at might be a couple years down the road, and I'm not sure I would want to wait. So, welcome, glad your here, And hang around a while, bet you will find its well worth it. Let me know if I can help you any way.

Barnacle · Senior Member

I have likely had HCV since about 1972. Family Dr originally was just watching it doing regular blood tests. I don't know or understand the numbers but about a year ago he said it was becoming more active and I should look into treatment.

Originally it was going to be a biopsy but ended up getting fibroscan which is far less invasive and I am told more accurate.

I have stage 3 fibrosis but specialist is more concerned about hemochromatosis. The Dr that interpreted the fibroscan said lets treat the iron first before we worry about the viral treatment. He was going to discuss this with my specialist and suggested regular phlebotomy treatment.

I am hoping this will reduce some of the damage already done and possibly by the time that treatment is complete (6 months) some new drugs will be available as I have heard rumors of better treatments.

Anyway that's where I am at right now. Glad you folks are here. Looking for any encouraging words as I am a little nervous about all this.

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