New Diagnosed

[Willfightit]

I was diagnosed with Hep C several months ago.  I have probably had Hep C about 37 years, since about 1970.  I have generally not had any noticeable symptoms until recently.  I have decided to go ahead with the treatment and will likely start in about 2-3 weeks.  I am African-American, genotype 1a, 54 years old, and have a viral load about 511,000.  It is my understanding that I have all the factors that make the virus difficult to treat.  Despite the so-called odds, I am determined to move forward with the treatment.  Can anyone offer me any advice.  How do you feel about my chances at SVR?  What are the typical side-effects that you experience?  Do you have any advice on things that I should do to help make the treatment successful?  Please respond.

[GoofyDad]

Push for the bx - or one of the non invasinve tests - fibrosure or fibroscan. Knowing where you stand might make decisions easier if yu need to consider aborting or extending treatment, or even early termination due to a great response. With little damage you can play a little looser.

The single thing yu can to in peparation is get in shape. The less body fat the better - and you can plan on loosing some muscle mass - so whatever you can reasonably layer on now may pay dividend down the road.

I used to live in Maryland. Visit a few times per year. Western shore, on the South River.  Heard the weather's been really nice this week.

Take care - good luck - and be well.

[Lady Lauri]

Welcome Barry. I am type 2b,(very 'lucky' there) starting tx next Tues, been on this site @ 2mths. It's helped me more than any of ALL the researching I've done. ( while researching is good, this is friends in hep walking in your shoes, with so much exp. and knowledge.) My 'terrified' has gone to 'scared' on this site :} I am learning much and much more to learn and I have no doubt that these people will help me every step of the way thru tx. You seem pretty calm and level headed, that will help. Fear started taking over my life.
To both you and revolution.... the biopsy was nothing. They numb the site and I did with no sedation. I got a pain in my shoulder (a nerve) for a little while, but still didn't need the shot they offered. It was so fast, seconds. With all else to worry over right now, don't waste 'stress' on that one. And I am a real wimp in all medical things. You really should get one, finding out I was stage 3 changed all my thinking, decision on tx now. Plus knowing the damage is important in needed lifestyle changes.
You'll be fine. Personally, an IV is worse!
I wish you both the best and easy tx and SVR :}
                                                                                     LL

[PrettyPoisonNoMore]

You are meeting some great folks with lots of knowledge.  I have already treated and am SVR.  I also had 1A.  Your viral load is low which is good.  You may also want to check out the janis website.  It is a great resource of information on hep c.   The address is www.janis7hepc.com - just start reading and researching.  Treatment made my thyroid go hypo, and now that's back under control and I feel pretty good.  Good luck!

[Willfightit]

Revolution and Trish77, thanks for your feedback, I really appreciation all the information and sharing.  I have been reading a lot of books and surfing the web for information.  I do exercise and try to follow a good diet.  I failed to mention that I was also diagnosed with hyperthyroidism.  The thyroid problem is new.  I am being treated with methimazole for the thyroid problem.  I would to proceed with the treatment while I am fairly healthy.  Thanks for all the responses, and more importantly, the concern.

[Trish77]

Hi will :)

Similar but different here.  Diagnosis about a year ago and took me nearly a year to see someone about it so all my information is coming now.  My viral load is 1.3 million, my genotype is 1a/1b.  I'm a white, 46 year old female and I've had it for 20+ years.  I had my biopsy yesterday ... it really is an easy and quick procedure, the hardest part is thinking about it before you go and the hardest part of the procedure itself was having to do leg exercises to keep them from cramping up!!  They got annoyingly achey!! Some people get shoulder pain, I did for a short while and then it went away. I get my results next week and I look forward also to having all my pieces together.

I will most likely do tx because of many reasons on the plus side at this time in my life and very few on the minus side at the moment.  I have coverage for 80% of the meds, maybe all of it and I'm scared to death to wait in case I can't afford it later on. That's only part of my reasons for proceeding but it definitely plays a part.  

My doc also said that the biopsy wouldn't change the need to do treatment, that my viral load alone made it necessary.  However, I asked for one anyway because I want and need to know what stage my liver is at.  I will let more experienced people here tell you the marjority of what you need to know, however I will tell you in my opinion to go for the biopsy.  You should know how your liver is doing and my doc told me that a biopsy is the ONLY way to know what shape your liver is in.  The biopsy results will help you round out your thinking on your decision whether to do treatment or not.  I would read a great deal before you make a final decision as well.  If all my other factors were not lining up so heavily on the plus side for treatment..a liver that's in comparatively good shape might make me wait for the new drugs expected out in 2009.   Read, read, read.  Ultimately the final decision is yours to make based on your own situation.  

I came to this site two weeks ago and I feel ready to do battle.  I give the majority of the credit for that to the people and information shared on this site.  Forewarned is forearmed and I feel armed and ready as much as you can be without actually experiencing it.  Nothing can totally cover that off.

I wish you good luck and you have good company here in your fight. Keep posting and keep us posted.

Trish

[revolution]

Hey there, I'm newly diagnosed also.  My biopsy is next Tuesday, and am eager/terribly frightened to have it.  At least then I fugure there will be one more piece of the puzzle in place.  I'm 1b, and vl is 6,630,000, not sure how long I have had it but figure about 25 years????
Lots of information on this forum, from what I have read eat right, exercise, get up and do what ever you can, and be informed/involved with your treatment.  
Your name says it all, fight.
Sandy

[frijole]

Love your nickname

Push for the biopsy.  It will help you make decisions as you go down this path.  There are many many here who wished they had had the biopsy up front.  You said you now have symptoms.  What are they?

My advice would be twofold.

First, get a copy of every paper -- every test run right from your first viral load test and genotype test and every blood test.  Should you decide to change doctors later, it will be important  (My records are more complete than my doctor's were).  It is also important throughout treatment.

Second, find out before treating your doctor's thoughts on testing and protocol.  Since being African American, you are harder to treat, ask for more PCRs (viral load tests) than SOC (standard of care which is weeks 12, 24 and 48).  Get them done at 2, 4, 6, 8 ..... if your insurance co will pay for that many.  At least week 4 for sure!  Also ask for the most sensitive PCR tests available.  Find out which lab you will be using -- most use LabCorp and Quest altho there are others.  Don't settle for a test with a sensitivity down to 50.  PLEASE!

keep posting here and ask lots of questions.  good luck
frijole

[Willfightit]

Hi Hither, hope treatment goes well for your husband.  Glad to also have your support.  After I start my treatment, I am going to ask my Hep Doc if I can take SAM-E and Photosome Milk Thistle.

[hitherdither]

Oh, meant to add he's taking Milk Thistle and Omega 3 fish oil.  And vitamin C.  I think the milk thistle really helps and the Omega 3 I think has brought his cholestral down to normal range.

[hitherdither]

Hi Will, sounds like you and my husband have the same dx.  He's 57, white and has 650,000vl.  He'll be starting tx in the middle of Oct. He didn't get a bx because he has low blood platelets which still bothers me.  He was told he's  had it for about 37 years also.  He has no symptoms other than being tired and only a little.  If you decide to treat you'll have lots of company and lots of good people to see you through. You have come to the right site.  But if you can get a bx that would be a good thing. At least you'll know what your liver is doing instead of going in blind like we are. Good luck!

Hither

[Willfightit]

Jerry, I will consult my Doctor about the bx.  He is a Hepatologist and did not order one, he said it was not necessary.  I might add that he is also a teaching Hepatologist.  I also tried some supplements and did not get any results.  I believe some of the herbal and vitamin supplements that I took my have aggravated my condition.  I also took milk thistle, but did not feel it contributed to aggravating my condition, the other herbs I feel were the source.  I am going to read your post.  I am so glad that I came to this forum.

[Willfightit]

Hi Deb, I live in Maryland and am male.  I am still forming an opinion about my Doc, try to assess his level of expertise, he is a Hepatologist.  He did not influence my decision to start treatment. He advised me that African-Americans do not respond as good to treatment and cautioned my that there are some serious potention side-effects.  He further advised me that I should not be discouraged from starting treatment because African-Americans do not respond as well as others. I welcome any support that you and others can give me.  Hopefully, at some point, I can offer support to others in the forum.  
Barry

[orleans]

Hey. I was dx 2/06. As I educated myself about this disease I was wary of the treatment with it's substantial side effects both during and post tx. I got a bx 1/07 and it came back a scary stage 3. I am asymptomatic, if fact I feel really pretty good. I am loathe to risk my seeming good health. If it were not for the blood test I would not know I was sick. I tried dietary supplements hoping to buy sometime. There are new treatments just 2 or 3 years out. That has not worked out. (Check out my post on the other side "My experience with supplements" for the details. So I am on the verge of starting treatment. I have an appointment with my hepatologist  on Thursday. I would very much like to get into the Telaprevir trials (phase 3 is to start up shortly). You might want to do a bx before you make a final decision about starting tx. You never know, your liver might be in decent shape. I am a little surprised your Dr would be willing to treat you without one. Is He/She a gastro. or hepatologist. My first Dr was a gastro. and not so experienced with hep c. jerry

[debnevada]

You really came to the right place.

Are you female...you might have given a hint in your post but i'm so brain dead these days.
Tell us about your doc, where you are located, etc.

Will, there are no typical side effects. It is really different for everyone; i wish i could be more precise.

deb

[Willfightit]

Thanks Jerry for the feedback.  I have not had a bx, just an ultrasound.  Despite not having the bx, I decided to go forward with the treatment now, instead of waiting and having my immune system further weakened as I age.  Have you been treated or will you be treated?  How are things with you?

[orleans]

Hey,  1a is the toughest geno type and African Americans do not respond as well to treatment from what I understand. 54 is not that old (me too1a,  54 w/ hep 37 years) vl not that high either,many here are in the millions. Have you had a bx yet? You've stumbled on to a great site. Just stick around and all of your ? will be answered. Sorry for your dx, we will all be pulling for you. jerry