What's the real story

[JMar63]

I found out that I had Hep C after deciding to give blood for Lent. I received a letter informing me of this disease.  I wanted to curl up and die. And after reading some items on it, I just cried. I can't cry now.  Too numb. I am assuming that I am "lucky" to have Genotype 2. Liver enzymes are normal and an ultrasound showed everything to look good structurally. I was told I would be taking interferon and ribavirin for 6 months.  But I am freaked out. I know I don't have to have a biopsy which I was dreading. He wants to see me in Sept. to start the treatments. I have never been so scared in my life. I try to make light of it with close friends and family regarding the weight loss part of it,,as I'm trying to lose weight already. I know I have to do this. and I will. I have been thru a lot. But I need actual side effects from you guys. You know that the internet gives you 1000 possible side effects. I think the one part that scares me the most is how it affects you mentally. I already take xanax, elvavil, celexa and lamtical. (I'm bipolar but not medically controlled. I have learned to remedy it with helpful friends). What is going to to happen to my mind when this starts? Please help me~

[tlhorton23]

I sure wish my husband and I had read this 8 years ago, before he underwent 10 months of the maximum dose of Interferon/Ribavirin...Not only did the treatment NOT work, but we have been dealing with the long term side effects from what we now have to assume is permanent brain damage, ever since.  We thought because he was young and had so little liver damage, that we were doing the right thing by being proactive with this treatment...he is now 100% disabled, 70% from the side effects of treatment over the disease itself.  The only thing we were told, going in, was that there might be some temporary mood changes during treatment...we had absolutely no idea of the risks involved...to this day, he still has very minimal liver damage, it's actually the same now as it was 8 years ago, despite still having this disease...however the severe cognitive and personality changes caused by the treatment have never gotten better...We bought into the fear that his doctors induced 8 years ago about the 'dangers of not receiving treatment' and I'm still furious about this...given the fact that, at the time this treatment was the only game in town, we thought we were making an informed and responsible decision...and we've been paying for it ever since. It would have been nice to know, going in, that my husband was actually a guinea pig instead of a patient...

[JMar63]

I have still battle with getting this done and over with or waiting. And to top it off my dr wants to take me off xanax or go to a psych dr. I am going to the head doctor. I've already made an appt. This will be better for me I think, when it comes to dealing with the emotions behind this. I know it sounded like I had gone completely over the edge but that is my personality. I have learned to "freak out" very well. lol  Now it's just hurry up and wait. I will be glad when I get to see the hcv dr and find out exactly what's going to happen. Just trying not to have anxiety attacks. Between this, being disabled, going thru a divorce and my mother possibly having dementia or Alzheimer is just overwhelming. Just keep praying~

[JMar63]

;-))

[crossroadsec]

Glad to hear the calmness in your last post. This is a great time to get ready for treatment by learning all you can about side effects, diet, and exercise. This is a great group. They will see you through this.
Good luck! Karen:)

[JMar63]

I have called my doctor and left a message about the Sofosbuvir. I won't know anything until then. I'm sure he'll check it out. I trust him. I also told them that I would like to wait until this drug is available. So it's a just hurry up and wait situation at the moment. I really don't want to take the shots. I hurt every day of my life anyways. I'm not sure I could handle much more pain. I was going to go to a pain clinic for some chronic problems and get some pain medicine. I am going to call the pain dr and see what they suggest I do. I feel much better about the disease and its effects on the body. I am much calmer and definitely more informed. And for that I am thankful.

[Dee1956]

I am so glad you are going to wait.  You have the opportunity to try a tx that does not include Inf.
I would definitely wait until the new drug is approved.  I finished tx  with Incivek, Inf, Riba, 17 months ago.
If I could have waited for the newer drug I would have however I was already in to cirrhosis so could not wait.
The new drug is for people who have never treated before and it has a good outcome in the trials with many less side effects.

Good luck

[rambleon40]

Here is an interesting opinion of one gastroenterologist with 45 years' experience:

http://www.news-medical.net/health/Hepatitis-C-treatment-no-benefits-and-possible-harm.aspx

[klonny55]

Hi Jmar,

Since my earlier post in this thread I have made the definite decision to wait for sofosbuvir to be available. I have F2-3 fibrosis and am genotype 2 like you. I feel extremely lucky to be in a position to be able to wait a short period for the non-interferon treatment because of being a gen 2. Most with HCV are not in this position. If something goes wrong with the sofosbuvir approval, which seems very unlikely, I can opt for the interferon treatment at that point. I don't want to tell you what to do but I thought I would share my thinking because it sounds like we are in a similar place. I was just diagnosed in late March of this year, only 13 weeks ago. There has been much to learn and absorb. I read what Hector wrote the same night I posted in this thread on June 18:

"Instead of starting interferon based treatment in 3 months, wait and start Gilead's Sofosbuvir and Ribavirin treatment in about 6 months (when it comes to market) and based on the odds you will be cured in the Spring of 2014. It really doesn't get any better than that."

Those words really resonated with me. Good luck, it sounds like you are on the right track now to find out more and make an educated decision.

Best wishes

[dontworry_behappy1]

whew!  : )

[JMar63]

I have just read up on the Sofosbuvir. I am definitely going to call my physician. If the side effects are aren't so severe for this new drug, and it appears to cure with a higher rate than the interferon then I would definitely be will to wait on it. I don't want to be sick. (I did want to be a size 4 or 5 again tho). I am so glad you guys have responded. Each person has given me a different perspective on this and telling me about something new is awesome.

[dontworry_behappy1]

Ok.  I could have this wrong but your reading this because the FDA hasn't approved it for the public.  The issue is...it's on the eve of approval.  It's like only months away.  Yes every treatment drug has side effects. But if you can treat with one that doesn't require interferon shots that's a plus and then some.  People who get the opportunity to treat with all oral drugs are so
thankful they don't have to give themselves these shots every week.  To put it bluntly- I hated that part of treatment.  Think of it as one less thing your going to have tolerate.  The fact is...lots don't tolerate it very well.

[JMar63]

I will call my doctor's office tomorrow and ask about the new medication. And see if I should wait or not. I just want this to be done with. This is the only thing that makes me leery. (Sofosbuvir is an investigational product and its safety and efficacy have not yet been established.)

[dontworry_behappy1]

I can tell you that I didn't know anything about hepatitis C before starting treatment.  You have a great chance to treat really soon with a non interferon treatment and your going to pass it up?  Do you know how lucky you are to even get the opportunity to treat without interferon.  If you do nothing else right now...take the time to look up the side effects of interferon treatment.
I didn't know anything about interferon before treatment.  If I knew what I know now .....I would be blessed to know I could avoid the side effects of interferon.   I agree that if you have Bipolar issues you really need to talk with your doctor.  The mental side effects of interferon are challenging.

Educate yourself About Interferon

DWBH

[JMar63]

I have absolutely no way of knowing how or when. I have been sexually assaulted a couple of times. The reason I know there is no biopsy is that he said we would start on the meds in sept. And for me to have a good summer.  As far as the joint pains go, I already hurt everyday of my life so maybe that part is to my advantage. As far as holding off on the meds, I have decided to just go ahead and get it over with. If not, I could spend a couple of years dreading it. Rather be done and get it over with. I already can't move well in the winter.  I trust him.

[BoceprevirGal]

   I agree with Hector:  I think you need to tell your Doctor that because
of your Bipolar Disorder,  that you dont feel safe treating with Interferon.  Tell him you want to be first in line, to be treated with Sofosbuvir, which, if all goes as planned, will be available this December, 2013.
  

[klonny55]

You may want to ask your doctor about the new treatment described above. As a genotype 2 you would be able to do the interferon free combo that will most likely be available by the beginning of 2014. I am a genotype 2 as well and am dealing with the decision about waiting as we speak. If your liver is not in bad shape it might be worth considering waiting especially given your other issues. A biopsy is the only way to find out the condition of your liver. I just had my biopsy last week. I went for a 45 mile bike ride the next day. It was no big deal for me. I can't say how it would be for you but for me there was less pain than getting my teeth cleaned.

Don't panic, take some time to educate yourself, and make sure you have the right doctor (a hepatologist) that can give you the proper care and guidance. You have a very good shot at getting rid of the virus.

Best of wishes!

[ActingBrandNew]

FOSTER CITY, Calif.--(BUSINESS WIRE)--Jun. 7, 2013-- Gilead Sciences, Inc. (Nasdaq: GILD) today announced that the U.S. Food and Drug Administration (FDA) has granted priority review to the company’s New Drug Application (NDA) for sofosbuvir, a once-daily oral nucleotide analogue inhibitor for the treatment of chronic hepatitis C virus (HCV) infection. The FDA grants priority review status to drug candidates that may offer major advances in treatment over existing options. Gilead filed the NDA for sofosbuvir on April 8, 2013, and FDA has set a target review date under the Prescription Drug User Fee Act (PDUFA) of December 8, 2013.

The data submitted in this NDA support the use of sofosbuvir and ribavirin (RBV) as an all-oral therapy for patients with genotype 2 and 3 HCV infection, and for sofosbuvir in combination with RBV and pegylated interferon (peg-IFN) for treatment-naïve patients with genotype 1, 4, 5 and 6 HCV infection.

Sofosbuvir is an investigational product and its safety and efficacy have not yet been established.

http://www.gilead.com/news/press-releases/2013/6/gilead-announces-us-fda-priority-review-designation-for-sofosbuvir-for-the-treatment-of-hepatitis-c

[ActingBrandNew]

" I know I don't have to have a biopsy which I was dreading. "

Why arent you having a biopsy? Do you have any idea how long you've had HCV? I know you just found out but is there a blood transfusion etc that may help you indicate when you contracted it? I ask because if you think you've had it for a long time, it would be wise to get a biopsy to see the state of your liver. You may benefit from a biopsy regardless though because if your liver is not damaged at all, you may consider holding tight until there are interferon free meds available.

I finished interferon and Ribavirin in April...I had all the side effects the labels mention and some. 2 months post treatment and I feel a lot better but still have some joint pain. With your psychological background, (bi-polar) you may want to get a second opinion on treating as the meds do increase depression in many people. Just my 2 cents.