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715633 tn?1249518882



This is my first time writing but I need some serious advice ( serious that is too me). I have been reading other's questions and issues to get a feel of what the Hep C virus really is. I am so confused to what I need to do...

A little about myself...

VL 12K, liver biopsy stage 2 grade 2, I received the virus from a blood transfusion in 1990...My doctor's advice is to wait a year for the new drug but wants to leave the final call up to me because she said, my VL could possibly jump higher in the year waiting. My problem is I am achy all the time with headaches. I want to get this virus out of my system so I can be active again with my children and husband. I just dont want to start the current treatment and it doesnt work only to have to go through it again. What can I do to relieve the achiness and headaches...I was prescribed tramadol.  
I dont even call my doctor about my achiness and headaches because I feel there are so many other people who need their assistance more than I do with such a low VL,
Any advice...
13 Responses
Avatar universal
what genotype are you?
715633 tn?1249518882
I am genotype 1b
9648 tn?1290094807
Are you sure the achiness and headaches are from the hep C?

Just asking because I was having a lot of achiness and it turnred out to be a vitamin D deficiency.
715633 tn?1249518882
When I have mentioned the achiness to my doctor they never ask or said anything about a possible Vitamin D deficiency always that a side effect to Hep C. I will ask them to check me for that. Thanks.
9648 tn?1290094807
My regular doctor never spotted it. I went to an endocrinologist and she's the one who figured it out.

What kind of doctor are you seeing?

BTW--I'm doing one of the "new meds" on a clinical trial. Also 1b. The statistics are against us when it comes to treating with the standard meds, so to me it made no sense to jump in until the odds were more in my favor. I wasn't having any symptoms with the hep C, though. Every time I thought--"ah, it's finally the hep C getting symptomatic", it would turn out to be something else.

The problem is, that if it *isn't* the hep C causing the achiness and headaches, treatment won't make  go away. And treatment could make you feel really bad for a whole year--or not, and even give you new problems--or not.

IMHO you want to get as many of the odds in your favor as you can before you start.
Avatar universal
I'd recommend starting treatment. You have a low VL. You don't have an easy genotype to cure, but you don't know how well you will respond unless you begin treatment.
619345 tn?1310345021
I do not agree with the above statement of just jumping in to treatment "to see how you will respond"  I am sure many others here will also not agree
you need to first see your current physical condition
Age is a factor if you are young it is better for you
however if you have the following issues

IR insulin resistance  type 2 diabetes which HCV can cause you will lessen your chances by a considerable percentage of clearing  and bring on full blown diabletes

Thyroid issues  Will make the problems worse with treatment and cause problems that may or may not be the cause of you being taken off the treatment

RA  Arthritis and neuralgia or Fibromyalgia  this can worsen

your symptoms may not be HCV related but related to other conditions that HCV has caused over the past years you have had it   I know all my issues which I would not have known if not for this forum and the great people here who have helped me

Better to be well prepared going in  that is my opinion you have a lot of homework to do
in research and more blood tests   Viral load flucutuates and you can bring viral load down pre tx with sups and you can insulin resistance  

Just better to be well informed and that is what you are here for so ask many questions

best of luck to you with your doctor and Welcome to the Forum
Avatar universal
I also don't think that anyone should start treatment just to see how you will respond. The decision is a lot more complicated than that.

given that you have the hardest to treat genotype, and only moderate liver damage, you reasonably could wait for the new drugs projected for 2011. These new treatments promise better cure rates with less exposure to these toxic drugs.

as to your viral load potentially increasing over the year, unfortunately, if your doctor actually said that, then she is not very informed.  viral load is absolutely nothing to do with disease/fibrosis progression. you can have high viral load and very little damage. you can have low viral load and a lot of damage. what's more viral load t up and down, often dramatically, all in the same year. My guess is your doctor is not a liver specialist (hepatologist) and while I do agree with the recommendation to hold off treatment, you might seriously consider seeing hepatologist at some point before you actually do treat, or simply to get a more knowledgeable opinion.

-- Jim
Avatar universal
Never jump into anything but love.

It`s the stupidest advice in the world for a Genotype 1 with little damage to jump into a taxing treatment with such poor odds of success and unknown long-term side effects. Only in specific circumstances (medical, financial, personal) would a person with his head on his shoulders and his eyes open plunge into treatment. This isn`t a night out at the bar.
Avatar universal
I agree with everyone above....it's not an easy to choice to make. If you don't have any pre-existing medical conditions, it might be a good option for you.
648439 tn?1225062462
On the other hand, I jumped in and have done research post beginning, which was frightening.  I mean I jumped in but I did have a plan and had been following treatment protocols superficially for years with my practitioner! However, I could have stopped at any time - right? I am 1b, low viral load, no damage, 55 years old.  I am responding very well to treatment and the odds have gone up for me to 90% chance of success.  I am tolerating symptoms, not well, but am sure I made the right decision.  One reason for this is that the chance of developing other health problems along with the HCV is high when your immune system is compromised by the HCV.  Balanced against that is the long term possible side effects of the tx.  Had I not done so well, I would have stopped and waited, I would never have done 72 weeks of treatment with my history.  As it is, I am considering stopping at week 24 and re-treating at a later date if I need to - I was <15 at Week 4 and UND at Week 12.  Depends on what the hep dr says.

715633 tn?1249518882
Thanks to all for your comments!
Avatar universal
IF you do decide to move forward with treatment--something to consider.
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