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New Pegasys Study data: 43% of non-responders have histological improvement Length of Interferon Therapy Chinese Herbs Hold Little Benefit for Hepatitis C Ligation Versus Propranolol for the Primary Prophylaxis of Variceal Bleeding in Cirrhosis Selective Digestive Decontamination Reduces Infection in Liver Transplant Patients Disease-Specific Analysis of Survival after Liver Transplant in the United States Prevalence and Predictors of Herbal Medication Use in Veterans with Chronic Hepatitis C http://www.natap.org/2004/Bangkok/bangkok_10.htm http://www.hcvadvocate.org/news/newsRev/2004/HJR-1.12.html#3 http://www.hcvadvocate.org/news/newsRev/2004/NewsRev-56.html#3 http://www.hcvadvocate.org/news/newsRev/2004/NewsRev-56.html#5 http://www.hcvadvocate.org/news/newsRev/2004/NewsRev-56.html#6 http://www.hcvadvocate.org/news/newsRev/2004/NewsRev-56.html#11 http://www.hcvadvocate.org/news/newsRev/2004/NewsRev-56.html#13

Tallblonde · Answer

My biopsy lists me as a Stage 1, but it also reads: "No fibrosis."  On top of that, my GI wrote a letter to my PCP and my reproductive endocrinologist that says "....she has no liver damage." 

Of course, I plan to have another biopsy within three years of the first one.  That's when my decision to treat or continue waiting will finally be made.

Susan

cuteus · Answer

I am trying really hard to remember, and can't, I only recall thinking that your vl was lower than mine but you and I had the same level of damage...and now you said 0 damage, so I wonder who it was, if not you. 
If I can remember correctly, my bx said stage 1 grade 2 or is it the other way? That to me is mild damage, but still damage, and no way of knowing exact progression rate to the next level, and funny how  low vl can still give us extrahepatic symptoms. Oh well, if it is not the same readings as yours, then disregard the comment.
be well

cornsqueezer · Answer

cuteus...Thanks  I woke this morning still enjoying the news about my daughter, I'm so happy you also had good news back in 2003.
Be well!!!!!


Honey...Wow,I cant imagine going through the worry of three, 1 was bad enough.Thank you for your support.


Chevy...Thanks I,m happy you are finally gone to get to spend more time with your loved ones but I,m glad you were here to share my wonderful news. Take it easy, give your body time to adjust to being med free.Wishing you all the best!!!!!


Cindee...Thank you, I will be praying for, your such a caring person even with your own plate so full.( Sending Positive Thoughts Your Way)


Dottie...Thank you, I dont know what to say ..I,m so happy about my daughter but, I know it hasn't been that long ago since you got your daughters results and I know your still worried sick waited to find out more.You and your daughter are still in my prayers.
My tx is going well my joint-pain is better, thank you for asking. How is your Tx going since you went to full dose? Well I Hope!!!!
(((Hugs right back at you))) Debra

Tallblonde · Answer

Thanks for your thoughts and ideas.  Here's my position on this:  Not only am I blessed with an amazingly low VL, but I'm also blessed with no liver damage (based on my October biopsy).  

Given those facts, it's hard to ignore a study (albeit a small study) where 94 percent of the participants achieved SVR (regardless of their genotype) after just 14-weeks of high-dose interferon treatment (without riba).

As these studies evolve, it's beginning to look like there doesn't have to be a "cookie-cutter" approach to tx.  Perhaps someone like me with no liver damage and a viral load of 1,580 IU/mL can be treated differently than someone with a VL in the millions and stage 3 damage.

At this point, I'm still willing to roll the dice and take my chances that there is an alternative to the cookie-cutter approach.  Either better meds will come along, or there will be different approches (like the one I just described) to using the current meds.  

Susan

Amerabrit · Answer

Susan, Rev has it when he stated viral load doesn't determine liver damage, so I might be a bit wary basing tx decisions upon total viral load.  From info gathered here, it seems low viral loads respond better to tx so why not use "dynamite"? 
I am very concerned about the long term effects of tx, but since we don't know for sure what those effects might be but, we do know for sure the ultimate long term effects of HCV upon our livers, I chose to go with what I know.  I decided to "hit" this virus with everything available.  I don't like the idea of taking any other medications because I don't want anything to interfere with PegIntron/Riba's work! I take Ibuprofen for headaches and took my last procrit shot (for now) on July 1st, but that's about it.  Lordy, I don't want to have to do this again:)
Very best of luck to you with your choices.

Amerabrit · Answer

great news, I can only imagine your joy:)

lost and confussed · Answer

trihepguy,
thano you as usual for the great posts. doc has gone full dose for me this friday yea platelets did drop at 2 week test to 54k but i told him i am tired of romancing the dragon lets kill it!!
he agreed finally said he wanted to see how i was handeling it.



Debra,
oh hun congratulations, i know that you must feel a sense of relief that can not be explained. how is your tx going? i hope you are ok. 

hugs to you both
Dottie

cindee · Answer

TnHepGuy, hi and as usual, TY for all the info. I enjoy the reading and the learning!!!! I hope you are feeling good these days. You're a special man!!!!!I luv ya! Prayers, Cindee

Debra....WOW!!!! What a relief!!! I am so happy for you and your child! Congratulations are surely in order!!!!! God Bless You! I cannot image the strength it took while waiting for the test results! You are very blessed!!!  Much love @ many prayers, Cindee

AK Hepper??????? Did I read somewhere that you have relapsed? Let me know. As you know I have too! I will be doing a clinical trial study in October. I was EVR and undectable thoughout tx. Then BAM!!!! That horrible word! I will be praying for you and looking for your post. We might have a lot in common! MUCH LOVE @ MANY PRAYERS, Cindee (((((((HUGS)))))))))) PS I put my e-mail addy in the post before this one...to Sunag. Feel free to e-mial me! I would look forward to hearing from you.

cindee · Answer

Sunag, Hey there. I am soooooo sorry to hear you are having such a rough time. When I was on tx for 48wks...my really rough times hit about the same time as yours. I had a REALLY ROUGH TIME on tx. (not to alarm anyone...I did relapse and I'm starting a new tx in Oct) I WILL NOT GIVE UP UNTIL THE VIRUS IS GONE!!!!! I worked until week 7, longer than I should have. So I really know how you feel. I honestly thought about ending my life more than once! But I am a Christian and I couldn't do that!

As for the pain. GET YOUR DOCTOR TO REFER YOU TO A PAIN SPECIALIST. I waited a long time for that too. My liver doctor had me on loratabs and those contain tylenol. He was a GOOF! His nurse acted like she got pissed off when he put me on it. She didn't think I needed anything for pain!!!! I didn't like her anymore than she liked me!

SO GET TO A PAIN SPECIALIST.....I TRIED ONE AND I DIDN'T LIKE HIM...SO I GOT MY REGULAR DOCTOR TO REFER ME TO THE PAIN CENTER MY MOTHER GOES TOO. THEY ARE WONDERFUL! The first question I asked them on the phone before I went for my first apptmnt. was "do you treat people w/ hep c?" She said "yes, we have many here!" She immediately put me on morphine and my new hepatologist has no problem with morphine. I take 135mg a day. I take 45 mg 3X's a day. It works pretty good. But they want to leave some lea way to add more pain meds. if I need them when I start the new tx. SO PLEASE GET TO A PAIN SPECIALIST ASAP. THEY KNOW WHAT THEY ARE DOING!!!!! AND THEY DON'T FOOL AROUND! I ONLY HAVE TO GO EVERY 3 MONTHS NOW. She writes my rx for 3 months and my drug store has it on file...ready to fill when I almost run out.

As for the metallic taste in food. My Uncle has cancer and my aunt has given me a few tips. ALWAYS EAT W/ PLASTIC UTENSILS. I am sorry but I can't remember which co. makes fruit in cans lined in white plastic. I think it is DelMonte. You can buy one of each brand and find it that way. I KNOW BlueLake green beans are lined in white. Also PUT A FAN in your kitchen to drag the smell of cooking food out the other way! That helps alot! ALSO "COOL" YOUR FOOD BEFORE EATING IT....it does help so much!

I hope I have helped you with these suggestions. Tx is awful!!!! I honestly felt like I was dying sometimes...but I made it through 48 wks and I'm ready to go again!!!!!! Let me know how you do after you try some of my suggestions. Please?????

I will be praying for you. YOU CAN DO IT!!!!! If your are a Christian....stay in your Bible, that helped me a lot!!!!! If you need me you can e-mail me @ southern...34....belle...98, NO SKIPS>>we do this so our e-mail will be safer>>>>AT YAHOO. Be sure to put your name in "subject" so I will open it. Otherwise I delete any e-mail who I don't know who it is. Put Sunag w/ MedHelp...or ***@**** I will notice. I can tell ya some real problems I had on tx. w/o scaring everyone!!!!! LOL

I will look forward to hearing from you. IN THE MEANTIME...CALL YOUR DOCTOR AND GET REFERRED TO A PAIN SPECIALIST!!!!! THERE IS NO REASON FOR YOU TO HAVE TO DEAL WITH PAIN AS WELL AS TX. YUKKIES!!!!!! Much love and many prayers, Cindee

honey1616 · Answer

Debra...Oh wow...what a relief! Great News!  I'm so happy for you...I remember when my 3 girls had to take the "test"  Ugghhhh I was almost sick to my stomach until results came in!

Amerabrit,,,haha Circus would be right up our alley at this point because lately,,,honestly,,,,don't know what I'm going to turn in or better yet what...is going to show up on my face..body etc...LOL  One thing good,,,I have noticed that shaving legs is now long stretches in between and haven't noticed the extra hair on face yet,,,but probably it will find its way on my face LOL  I love "cotton candy" but love your term "candy floss"   Take care!

Amerabrit · Answer

I do the same thing, I am constantly running my fingers through my hair and throwing away the strands:)  I just got mine cut to sit on my shoulders with layers for fullness.  I have always considered my hair my best feature but now it looks like **** or, not as goood as it once did:)  And, to add insult to injury, the hair leaving my head seems to be finding it's way onto my face!  What the dickens is that all about?  I now have these fine hairs growing around my jawline - It is so ironic that the reason I may have contracted HCV was via electrolysis and here I am today, seriously considering the needle again..  I must be madder on tx than I thought I was:)
I suppose I could always consider joining the circus, at least I would get to eat lots of Cancy Floss...:)
Hope you're feeling better...

Amerabrit · Answer

Then you should be finishing tx on New year's Eve, too?   We will both have something extra to pary about:)  The sun seems a lot harder for me to take these days, too, although I can manage the heat a lot easier than the humidity.  Right about now, San Diego seems a good place to be:)
I'm really happy to hear you're doing OK, I will think of you on Friday when I take shot # 24/48. I already hace my rx for the next set of bloodwork;  I remain cautiously optimistic.. :)

TnHepGuy_ · Answer

Thank you all very much for your kind words and thoughts.

Amerabrit - as to how my day today is going - the heat, humidity and sun have done me in. I have been outside a few times today (it's 90 and sunny) and am in need of a big-time recovery nap right about now.

I am a geno 1a, bx of grade1/stage1, starting viral load of 2.4 million, taking approx. 200mcg. Pegasys (I load all that I can into each syringe and the amount extra equals about 10% more than the 'standard' 180 mcg.) and 1,200mg. of ribavirin, EVR at week 11.5, will be doing shot #24 of 48 this weekend, doing one shot of Neupogen every 2 weeks. Have experienced a lot of the usual sx's, with some persistant ones, but overall things have been relatively tolerable. I hope all is well by you on your tx trip.

honey15637 - good to see you again, too. And I hope all is going good on your end of things, as well.

tallblonde - that really is an interesting study. But I wouldn't consider ever 'flying solo' with just interferon. Even if your doc agreed to a shorter attempt at tx, adding riba to the mix could only greatly help the cause of viral eradication and therefore your chance at SVR. You would also want him to agree to do an early set of PCR tests (e.g. - weeks #1, 2, 4, etc.) to make sure you are responding as rapidly as is hoped for. This way you would have more information to go on in trying to determine if you met the criteria for a that short course. Also, the results would help in deciding if you wanted to prolong tx beyond 14 weeks (or any short length of tx) once you committed to beginning it. I'm of the school of thought that says that once you commit to treatment, you give it the best shot you can during the course of it - for the ultimate goal of viral eradication and/or histological improvement.

TnHepGuy

Tallblonde · Answer

I think I agree with you both on the riba issue and the frequent PCR's.

I'm really kind of excited about this study and will definitely present it to my GI.  It just makes sense to me on an intuitive level that a standard 48-week treatment regimen (I'm a 1a) is a bit much for a VL of 1,580 IU/ml.  Isn't it like killing a mosquito with a stick of dynamite?

Of course, I'm still holding out some small hope that before I even embark on a 14-week treatment course, they'll tell me that my 1,580 VL dropped to zero.  A girl can dream, can't she?

Susan

DonL · Answer

For the record, I am still having sex. And even if I am not interested at first, I seem to develop a growing interest as we try. If you must know, sometimes I cannot finish, but we wait a day and try again, so far, successfully. Sigh, the things you have to do to maintain while on tx.

And for the record, my hair has gotten thin and straight and I am balding more. Fortunately, as a 52 year old man, no one notices.

cuteus · Answer

I know exactly how you feel, i was there june 2003. Congratulations and now,... to get you well. Enjoy the good news.

cornsqueezer · Answer

TnHepGuy....Thanks for all your hard work, keeping us informed on all the latest news.


Everyone- I just wanted to share my wonderful news about my daughter all her test came back negative. Her Alt was 11...Negative on HBeAg and HCV Ab...I have been so worried about this ,I dont know how to explain the joy I feel right now I just wanted to share it with you guys.Thanks Everyone...... Debra

honey1616 · Answer

LOLOLOL  Ohhhh how funny!!  Yep...Did see the tweezer one and was a little concerned about that one!  Headache has subsided...Yeahhh,,,Can't believe it and don't want to say it too loud yet but I'm feeling soooo much better today! My daughter was here this weekend and cut my hair,,,sniff sniff LOL It was right above shoulder and now its cut about 2 inches up...It does look thicker though which helps and got new shampoo and also noticed it is still falling but finally stopped the handful stuff which I'm sooooo happy!! haha Just got back from work and was looking in my car on floorboard and looked like a toupe was down on floor....Haha so disgusting!  I constantly am pulling on my hair as its shedding while driving and throwing down on floor! LOL  Hey,,,,how you holding up?  We will be doing your count down soon!!  Take Care!

Tallblonde · Answer

Thank you, again, for keeping us up-to-date on the latest research.  Of course, with my VL being only 1,580 IU/ml (down 94% since November, without treatment), I was paricularly interested in the study on "Short-term interferon therapy for chronic hepatitis C patients with low viral load"

They found that over 90% of the study participants achieved SVR with a 14-week course of interferon treatment, regardless of genotype! And the VL's of the participants were a lot higher than mine prior to the treatment.  I wonder if this is something that my GI might consider implementing in my case?

Thanks for the link.  I really appreciate it!

Susan

Tallblonde · Answer

Thank you, again, for keeping us up-to-date on the latest research.  Of course, with my VL being only 1,580 IU/ml (down 94% since November, without treatment), I was paricularly interested in the study on "Short-term interferon therapy for chronic hepatitis C patients with low viral load"

They found that over 90% of the study participants achieved SVR with a 14-week course of interferon treatment, regardless of genotype! And the VL's of the participants were a lot higher than mine prior to the treatment.  I wonder if this is something that my GI might consider implementing in my case?

Thanks for the link.  I really appreciate it!

Susan

cuteus · Answer

hey there! hope the day is better today and the pesky headaches are moving away, but leaving some hair behind...
The libido thing must have scared the heck out of snookie, we have not seen him since that post.
Somehow, commenting on the reasons for no sex makes for a better story (better for the ratings) than talking about carrying on with your sex life. NO, you are not the only one on the libido ride, but unless you and I are swinging from the ceiling with twirling knives it does not make for a good reading...;-}

scott is not the one with the "big" problem (the sheep can attest to that)...someone needed tweezers to fetch his...HE has a problem. don't you think? 
Take care

honey1616 · Answer

TnHepGuy,,,,Great stuff...Thanks!  Seems alot do have thyroid problems so need to definitely get tests run on that ever so often just to make sure!  Hope everything is good on the home front for you as you are greatly missed when we don't see you!

LOLOLOL  Just reading back post on tony's question....Am I only one in forum having sex on tx??? haha  Sex on tx..heh   Hey,,,yeah its definitely not as regular but still maintaining here. Its almost like the exercise thing,,,you can sit and look out window and feel yucky and not move but once you get moving,,,Don't you feel better!  I think that this is same thing,,,Effort is what it takes and come on People,,,,some of us are in this for the duration of a year...That is a long time!! Seriously,,,I am not one that would ever discuss my private life with anyone but since I'm hidden LOL  and know so many are really interested in this pertaining to tx....

Haha,,,Revenire,,,,where is your "organ" and why isn't your wifey looking for it???  LOL  Tell her its there its like looking for a needle in a haystack,,,Its there,,,just needs reviving!!

Amerabrit · Answer

Thank you so much for taking the time to post these links for us.
Are you having a good day today?  Where are you in your tx plan?  week # ?  genotype?
I hope you're feeling well andenjoying the summer:)
Thanks again.

TnHepGuy_ · Answer

Epoetin Alfa (PROCRIT) Treatment for Acute Anemia During Interferon plus Ribavirin Combination Therapy Early Initiation of Treatment for Acute Hepatitis C Is the Most Effective Predictive Factor of Sustained Viral Response A Multicenter Study of the Usefulness of Liver Biopsy in Hepatitis C Lymphoproliferative Disorders in Chronic Hepatitis C Natural history of hepatitis C following liver transplantation Association of interferon-alpha-induced depression and improved treatment response in patients with hepatitis C Hepatitis C virus-related extra-hepatic disease - aetiopathogenesis and management Efficacy and safety of two-dose regimens of peginterferon alpha-2a compared with interferon alpha-2a in chronic hepatitis C: a multicenter, randomized controlled trial A prospective study on treatment of chronic hepatitis C with tailored and extended interferon-alpha regimens according to pretreatment virological factors Hepatitis C virus infection as a likely etiology of intrahepatic cholangiocarcinoma Short-term interferon therapy for chronic hepatitis C patients with low viral load http://www.hivandhepatitis.com/hep_c/news/2004/070704_c.html http://www.hivandhepatitis.com/hep_c/news/2004/070704_b.html http://www.hivandhepatitis.com/hep_c/news/2004/070704_a.html http://www.hivandhepatitis.com/hep_c/news/2004/070904_a.html http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15241083 http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15245784 http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15233692 http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15233669 http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15196817 http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15245596 http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15239226

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