Is this really how I want to spend the next year.

[hopeful51]

Went to doc today and even he thought I might want to wait for new drugs.
I was really honest for the first time on the information paper they have you fill out about your symptoms.
Usually I just go yeah yeah I'm fine,but darn I'm not fine
This rash is nuts I have it alllll over even in my ears, head and  (we do get personal on this forum) all over!
I can't hold a conversation because of this ridiculous cough.
I am drownding in my own snot ( sorry another pleasant subject) and at a friend's BBQ the other day it was windy and my hair was literaly flying off my head.... not to mention the fatigue

I am week 20 of 72 did not clear by 12th week but am sure I will be clear by 24
Not much encourageiment from Doc eather as his answers were no the rash is not gonna go away these are the side effects this time.
I have a skin Doc and am seeing her....

Ya know I hate to write this cuz I sure do not want to discourage any body...so let me say this my first TX peice of cake.

Doc suggested think about it

So here I am thinking and writing.
I'm sure others have been here any thoughts
Trying to be hopeful51

[annieCinMD]

I got pulled off my treatment at week 20 so I know how you feel. My bloodwork tanked so they took me off until the results of today's come back. They will be fine, I'm sure of it, I feel too good. I am in a study for a second generation protease inhibitor. I cleared within 2 weeks of starting the study drug. Unfortunately, I had already done 16 weeks of SOC with results similar to yours. I got in a full month of the study drug and am still clear as of two weeks ago. I think I am still clear today, to be quite honest. I really wanted to stay off because I am feeling so much better, but we came up with a plan that I can live with. If the bloodwork comes back OK, I will complete another 4 weeks of all 4 drugs and call it done. I had some concerns about not ever being able to treat again with a protease inhibitor should treatment fail. Doctor said that is correct, BUT they are studying polymerase inhibitors now and I would be able to treat with them. You didn't mention your biopsy results and genotype. I am Stage 1 Grade 1 so I have a choice. Work is not optional and I start Grad school in the fall so I need to be off the interferon before September. The new drugs will allow genotype 1s to treat for 24 weeks. You'd be almost home free at this point. Most people can live with 24 weeks but a year seems unbearable to some of us, especially if we have just about every side effect possible to have! I'm thinking if your doctor is suggesting thinking about it, you don't have much damage. I am really hopeful about the protease inhibitor I am on. It's the other two that caused me most of the difficulty. It is really your choice, and you will know when you've hit your breaking point. Good luck. Get the derm to write you a script for that rash. It will help.

[newleaf09]

Hydrocodon cough syrup is very effective on riba cough.  Take it and it almost immediately stops the cough so you can sleep or whatever.  

I think we are a little afraid to respond to you.  Don't worry about discouraging others with your post.  We worry about discouraging you with our comments.  I'm sending you a PM.  Please check your inbox.

[thegypsy9164]

Just like you, I didn't want my 52nd year of life to be like what you've described.  However, my other option is to wait to treat, which will not be getting any easier as I age, or to just let this virus take me on out.  So...I am treating now and hoping that year 53 will be the end of the virus and the beginning of peace of mind.  I had to make a commitment to remain for the long-haul and when that commitment gets shakey to reach out for encouragement, which is why most of us are here.  Skin will heal, itching will go away, hair will thicken back up, sexual parts will begin working again and all of those other snotty, sneezy, upset stomach, puky, feel like you've been beaten with a ball bat symptoms will subside along with the presence of HCV.
Love
Joey

[mhudnall]

I only got through 12 weeks of interferon before the SX made me quit. Since then I went to an alternative MD who put me on Low Dose Naltrexone. His name is Dr. Weeks on Whidby Island north of Seattle. Dr. Berkson of Las Cruces New Mexico (FDA lead investigator of Alpha Lipoic Acid) also prescribes Low Dose Naltrexone for hep c patients.

I belong to a Yahoo group of hep c patients on LDN. There are not many of us, but we are starting a database with results. My initial pre LDN viral load was 1.6 million. In three months it was 58 thousand.

Peter Mc started at >5 million, three months post LDN at 980 thousand.

Chris started at 1.28 million; three months post LDN at 49 thousand.

Julie started at >5 million; three months post LDN at 632 thousand.

All showed much lowered liver enzymes. There will be many more records added to the database in the coming months. They are being sent to Dr. Jill smith of Hershey medical center in PA - she conducted the clinical trial on LDN and acute crohn's.

Critics will say LDN has not been studied for hep c. Ten years ago it had also not been studied for acute crohn's. Even so, most of the people that used it found great relief. Now Stage 1 clinical trials showed that in 3 weeks, two thirds of acute crohn's patients went into complete remission. The people that did not wait fo clinical trials and found relief must now be quite happy not to have had their bowels resected and put on steroids. I think the same situation is analogous for hep c patients now.

In my opinion LDN is saving my life. If something conventional comes along that is safe, I would consider it, but I certainly have time to wait.

Low dose naltrexone has no side effects and costs only $30 per month without health insurance.

If anyone wants more info send me a private message.

Mike H

[franke566]

Good luck with that.  I thought I had time to wait and now I am end stage even though I have been SVR for going on 4 years.  Had I not waited maybe things would be different.  I will never know.  Because of COPD and Heart issues I am all but 100% sure I'm not a candidate for transplant-will know on the 21st.  Sounds to me like Naltrexone slows the Virus but doesn't stop it.  I wonder if the Virus will figure out how to get around the Naltrexone and come out with a vengeance as all mutated Viruses do?  Then a new Hep C; Super Hep C virus could be born!  Scary!  

----------------------------------------

Hey Rockerforlife, I miss your posts!  where art thou?  Newleaf-you R so kind and helpful! and thanks to all my new cyber friends!  This forum is the best

[mhudnall]

Wow,

sorry to hear about your problems. Could I ask you a question? I am very curious as to what your biopsy scores were at the beginning of treatment. There has been a lot of speculation that fibrosis may reverse itself after achieving SVR, but that appears not to be so in your case.

Mike H

[franke566]

Because I was stubborn and in denial I wouldn't do a biopsy then about a year later my viral load was so high and an MRI showed several lesions my Hepatologist convinced me to take Tx.  At the end of Tx my fibrospect index was 39 now 4 years (nearly) it is 73-87.9% cirrhotic and 8.9% Portral tract fibrosis and some Septal fibrosis in between.  On the 21st I see my new Hepatologist again to get the verdict on whetheror not I can be on the transplant list.  Cardiologist put me down as high risk and I imagine that means no transplant in the cards for me.  Yes I was told the mild fibrosis I had at and after Tx would likely reverse but my liver got so busy trying to heal it went the other way.  Why?  I don't know.

[jdwithhcv]

It certainly is not the way I wanted to spend my 50th year, but I got through it and I am SVR.  My 52nd birthday is this month, and one week later I will be  1 year post tx.  It is a HUGE relief to have all this behind me.

I hope you finish tx and have a great 53rd year!  Best of luck.

jd

[mhudnall]

Franke,

since your fibrosis increased in the absence of the virus after treatment, is it your belief that the liver damage was worsened by the SX of post treatment?

With the SVR Or Bust strategy of second or third-time tx'ers, your case study cannot be good news as it runs contrary to conventional thinking.

Best of luck to you.

Mike H

[franke566]

Absolutely not Mike.  I believe that I should have allowed the biopsy and taken the Tx a year sooner;  before my liver was further damaged.  I had alot of sides during and after Tx-broke my back was on morphine or Demerol for 3 months, then Morphine tabs 60 mg twice a day, then Norco, had a mild heart attack, more drugs including anti-depressants with my Gastros blessing-then mis-diagnosed as having Fibromyalgia and put on Lyrica.  All this had to have taken a toll on my liver, don'yt you think?  The broken back happened shortly after I finished Tx and was stepping from my boat on to the bulk head like I've done a million times before and my legs gave out and was crushed between my boat and the bulkhead.  I had been complaining of fatigue during and up to the accident-My Hepatologist, Gastroenterologist, Neurologists, PCP all said it wasn't the Tx that made me weak-it would have passed by now: Yada Yada.  As for people who are SVR
and believe they are out of the woods-think again.  In "Most" cases- I want to emphasize "MOST" cases, you won't go on to develop Cirrhosis but not everyone will be so fortunate.  I thought the sides would leave and my new Hepatologist told me just last month that 3% will never clear them and a slightly higher number will go on to develop F2-F4 Fibrosis and Cirrhosis.  No one is the same. Genetics, life style before and after treatment. even diet plays a role.  I didn't know this 4 years ago.  I ate what I wanted, smoked alot of weed and tobacco, eagerly took the pain killers-after all, if the Gastro said it was okay, why not? The only habit I stopped was my beer.  Couldn't handle even one w/o getting sick.  Hope this helps someone.  Thanks for wishing me luck Mike-right back to you. Frank

[Marcia2202]

you must be joking... you CANNOT be 52, no way.... I thought you were in your 30's

[nygirl7]

Wow Frank - what a damn long road. I am going to hope and pray with all my might that you get on the list. I have seen your name but thought you had been here WAY longer than May 2009....did you just resign up I would have sworn you were on here a long time back!. It seems to me the people who try the hardest often have the hardest road of them all and complain so little. Then you'll see people with it relatively easy and all they do is cry about how hard it is.  It's just not fair that someone like you should be denied a transplant so I am going to pray hard - as hard as i can.

[jdwithhcv]

Thanks, its hard for me to believe.  I still feel like a kid in so many ways.  I remember when my mom was 52 and she seemed so OLD to me!  I was 11 then.

You can do a LOT with hair color.

[epiphiny]

I'm with Marcia on that one.  I thought you were much younger than me and I was always so impressed that some one of such youth could have such wisdom!!  Now I understand the wisdom but am still in awe of your youthful beauty!