Length of treatment

[Bliss68]

My husbands viral count went from 8 million to 10 thousand after only 4 weeks of treatment. His doctor told him he would have to  continue treatment for 48 more weeks. He has the 1A type and is in stage two. If his viral level returns to a normal level in the next few months why would he have to continue treatment for so long?

[jmjm530]

Veggie said: "but I cannot express strongly enough to those who just find out they are Hep C active to seek "professional" guidance and help, there are no Doctor's on this forum, that I am aware of anyway"
-----------------------------

While I agree, I think it's academic. Just about everyone who posts or asks questions here has already sought "professional" guidance or is in the process of doing such. As far as I know, none of us can order PCR tests, do biopsies or write rx's. :)

Unfortunatly, that guidance is sometimes wrong or wasn't explained in a way that was helpful. That's where this forum and other research tools come in.

There was a time when we all believed and did everything our doctors told us. I consider that the dark ages especially with the fast-changing info-technology with conditions like Hep C.

On a personal note, I cross-check everything with my own treatment -- what I read here, and other forums, study reports AND what my doctor tells me.

-- Jim




  

[v eggie dip]

Good afternoon all...

From all I have researched (yes southernboy newbies know how to research *smile*) and listened to all the stories here, it is my personal opinion that treating vs not treating is a **** shoot, you never know what you're going to get until you get it...

I have several pre existing conditions that include but not limited to peridontal, vision, PVC's, asthma and the list goes on, so in my case, the concern of course, has to be weighing the Hep C virus against potential side effects that could trigger any or all of my health issues to deteriate...

I have not and will not make such important health decisions that could alter the quality of my life based on other peoples opinions...I have much appreciation for this forum and come here daily to seek comfort and support but I cannot express strongly enough to those who just find out they are Hep C active to seek "professional" guidance and help, there are no Doctor's on this forum, that I am aware of anyway...

I wish all on this forum a long life, healthy and happy days forever and encourage all to maintain a sense of humor, laughter is food for the soul...

Beth *hugs to all*

[cougareyes]

Addressing the fear of transmission. I've had HCV for about 25 years and to my knowledge have never passed it on to anyone else. My ex girlfriend of 8 years, and my present girlfriend and her 2 kids of 5 years; are all neg. I just found out I was HCV 10/04; in 1980 I was diag. as nonA nonB hep(we know now this was HCV). My point is that for all these years I never practiced any extra precautions yet I never passed it on to the people that are closest to me.
For the most part, the majority of studies and reports from other board members show that the rest of their household are all negative. It seems to me that the people who live closest with you would be at the greatest risk.
This still is a concern, I'm not denying that; it just deserves to recieve it's own weight of merit. Just like every other issue that an individual faces when faced with HCV.
Thanks for listening

[cuteus]

PCR was on 8/31, I called today and it is still getting processed. Should know by the end of the week.

[cuteus]

LOL! I was thinking of her also! I got to email her. She is probably having too much fun enjoying their HCV free life.
My theory is she is fully recovered her wits post tx, and now is using them to their fullest.
I hope is not that she forgot everything about her Tx, including MH!

[doll face]

Where is Honey? have you heard from her?  


Honey: I miss you !!!! (I hope my husband doesn't read this, he would never understand) LOL

[cuteus]

Doll face, I am also not hesitant to recommend tx to folks with mild liver damage because the data and personal experiences shared do show that most side effects are not severe and are TEMPORARY. It is possible that had you gone the length the first time, your thyroid could have been spared. We'll never know.
How can I tell people learn to live with HCV because some drs' opinion is you really don't need to treat right away, never mind if you are in fear of infecting others inadvertently or that you have to make sure universal precautions are taken at your providers, and it bothers you each time. How can I say that you should be spared the temporary discomfort and the opportunity to rid hcv from your body because you don't have to.
Dr Palmer, does not attempt to persuade mildly damaged folks to not treat (liverdisease.com) and states: "Therefore, it is of utmost importance to attempt to eradicate HCV from the body in order to stop or slow progression of disease before any liver-related complications develop. The sooner a person seeks treatment, the more likely she is to reap its benefits

[doll face]

The best proof, doll face, Layla and I are negative. Good enough for us, and we will share that everytime.

Couldn't agree more. I will never stop telling my story and encouraging people that have made the decision to treat to try to go the distance the first time. I was never given the opportunity to do extended tx the first time (heck I had to wait for pegintron to be approved to even start the 48 weeks) and now I will never know if I could have saved myself alot of pain and heartache not to mention my thyroid or teeth had I had the opportunity, But if we can help others than it is worth it.



and by the way did I miss your 9 month post PCR results ??? I know that it is negative just, wanted another reason to do the little dance. LOL

[doll face]

First let me say that YES !!! I am clear of the virus and have been off of the meds for 10 months now.



I can understand your being afraid of tx after reading my post however that was exactly what I did not want to happen. I am not in the medical field so don't want to give medical advise I just share my story so others here can here benefit from what I went through. Since I didn't go hypo until 4 months into my second round of tx I really don't know the risks of already having thyroid problems. Suggestion :type in thyroid or hypothyroidism/ hep c into google and you will find lots of useful information. You can also do dental problems/hep c. That is where I found just about everything to prove my case to the health board.

I want to make another few points perfectly clear here. I was not able to prove that my bone loss was necessarilydue to the hep or tx, but add ADs and synthyroid to the mix and for as long as I took them is what they agreed caused my dental problems. I did not have problems with my teeth or gums before.

I did not have any liver damage when I started, I was healthy and active, and had no idea I was hep c positive. I found out during a routine blood test. I have been asked many times "had I known before hand of all the side effects that I would go through would I still have done tx?" My answere is and always will be YES. I no longer have this virus, I am not afraid to give it to anyone else. I no longer have people (family members even)afraid to be around me.

I am not afraid to tell all sides of my story, and by doing so hope to help more people.

[jmjm530]

Kim,

Just read your post about the ribavirin in the closed thread.

Because of my weight loss and GERD (reflux), after trying a number of food/meal combinations, I found the best way to keep weight on and GERD somewhat down is to eat two fairly large meals a day.

But even when I ate three or four smaller meals a day, I was careful to take my riba with the largest/fattiest two meals. Studies show the bioavailiablity of riba can be increased up to 70% with a high-fat content meal.

Lately, the GERD had been getting worse, so I've been eating my two meals around 9AM and 12PM. That way I can use antacids, Gaviscon, etc, from 4PM on without worrying about the antacids affecting riba absorption. (You can probably see by now I'm very focused/anal on riba and continue 1200 mg/day even as my weight dropped from 176lbs to 152. In fact, I'd increase my riba more if  my sides would allow.)

As far as the efficacy of my dose schedule, riba has a half-life of around 100 hours so it shouldn't make much difference when you take the pills and in what combination, as long as you get your full dose in each day. Some people, for example, take more pills in the morning and less at night so they can sleep better. My own doctor said I could take all six pills at once if I wanted.

However, I have noticed that the more pills you take at once, the more you feel the riba. For this reason, I'll  probably go back to spacing the riba doses closer to six hours apart as before. It is making me jittery.

I respect the passion in your arguments and your truce offer is unnecessary, but I do reciprocate. Hopefully others have found alternating viewpoints informative.

Be well.

-- Jim

[v eggie dip]

wow, you have been through so much...do you know if you are clear yet?  I had been fighting with the system to get help for my treatment in Tennessee (that's the last state I lived in before I moved to Canada) and basically was told if you don't have insurance you're screwed...I am on Synthroid for hypo and was wondering if it would have any kind of effect on me if I decided to treat, sounds like it had quite an effect on you...the more and more I read about the sides the more scared I get about treating, however, I am 54 years old and wonder if at that age is it wise to wait for more freindly treatments..also, I went for my 3 month dental cleaning last week and was told I have two #7 pockets...I have no idea how the heck that happened, I am anal with my teeth due to having peridontal surgery 10 years ago...after hearing your story about loosing your teeth I am really concerned...  

Beth

[jmjm530]

You've obviously been through a lot and I now better understand why you "push" for extended treatment.

I'm not against extended treatment for hard-to-treat populations including those with significant liver damage, slow responders, relapsers, etc. In fact, my original plan was extended treatment although based on a new biopsy report, I'm now leaning toward a shorter course.

I am however hesitant to recommend treatment (extended or not) for those with little or no liver damage. It's simply a matter of risk/reward. Why risk all those side effects and possible permanent damage if you have plenty of time to wait for newer, better treatments, hopefully no more than 3-5 years away?

That said, there is no one right answer for everyone. Each of us  has to make their own decision. All we can do here is share our thoughts and experiences.

-- Jim

[doll face]

I am going to post a quick version here of why I promote extended tx. This is not to scare anyone out of doing tx by any means just explain why I think it is important to do everything possible to achieve SVR the first time.


My first time on tx (pegintron) was for 48 weeks. They were the hardest weeks of my life. I was depressed at the time,(started on ADs), at the end of a divorce, my only child had left for the Navy and I was alone.  Then 911 happened,so my meds were delayed over a week, and I didn't know where my son was. I couldn't get out of bed for almost 3 months the sides were so bad, I slept 12-16 hours a day.  Well with the help of ADs and pain killers I got through it. I was able to go back to work part time and finshed my tx. Life was good my hair grew back, my strength got better, I was energetic, I moved to Tennessee, I was happy again. For about 2 months,.then I found out I relapsed. After all I had gone through I never questioned starting back on tx for the second time. I was sent to a hepatologist (I didn't like the way I was treated here in Tenn, so I went back to Michgian and they agreed to treat me long distance)

My doctor told me they were going to do 72 weeks this time on pegasys since I responded so well to 48 weeks that he was confident with extended time I would reach SVR. So I started again. He was very agressive with keeping me on full dose. He sent me all copies of my blood work and I drove to Michigan every 2-3 months for check ups. (Had most my blood work done here)I was kept on the Ads and intervened with procrit and neupogen when the time came. I was given scripts for Vicodin and imitrex shots for headaches and bone pains and stayed on course. I was able to stay working the full time.

Now comess the bad part, during the course of my second round of tx, my thyroid went hypo (hypotyroidism) so now I needed to also take synthroid ( and will have to the rest of my life) I gained over 20 ponds on tx (and continue to keep gaining due to the thyroid issue) I went in regularly for dental cleanings and check ups) and in 3 month period I had lost over 3 mm of bone mass in my upper jaw. I went from having beautifully straight healthy teeth to them telling me  that ALL of my top teeth needed to be pulled. (did not have dental insurance at the time, our unionlostit 3 months previous) I questioned it over and over how this could have happened and was told that more than likely "all the meds you have been on". I appealed to our health insurance to Help cover some of the cost and was turned down. So I paid the money $6500 out of pocket and did my research. After sending letters from my new and old dentist, my hepatologist, My PCP and about 40 pages from different wed sites. I was finally able to prove to them that the combined combination of Hep C, interferon, ADs and synthroid  IS whatcaused my bone loss and they have now agreed to reimburse me for my expenses.( all of these meds cause dry mouth, which in my case, caused the degree of bone loss.)

So my whole point here is......while I am definatley not the NORM as far as bad side effects they can and do happen. You see I did not just do 48 weeks or 72 weeks but I had those meds in me for 120 weeks. Had I done the extended 72 weeks the first time I might never had to do tx twice, AND I might never have gone hypo, so I would not have had to be on synthyroid or the Ads as long as I was.

If I can save one person from having to go through tx twice than it is worth it to me to keep pushing entended tx the first time, especially for us hard to treat 1s. Still it is a very personal decision that everyone has to decide for themselves.

I see what tx (and a bunch of other meds) has done to me everytime I look in the mirror, but everytime I look in my heart or my grandsons face I know why I did tx. (not once but twice)

I hope this helps you to better understand why "I" push for extended tx the first time.

[jmjm530]

I'm not a big fan of blindly following your doctor. There are ways to bring up issues without undermining their efforts. Being prepared with studies is one approach. Of course, I didn't mean to literally fax it to them. :)

The key in my experience is knowing exactly what you want to get out of treatment. Once you're clear in your mind, everything else follows  and hopefully without changing doctors. :)  This is easier said than done since it involves a lot of homework to convince yourself that you know what's best. This is a little different from the trusting your doctor approach but it suits me.

If you're so motivated, Projects In Knowledge is a great site to eductate yourself. http://www.projectsinknowledge.com/
Somewhere on that site you'll find not just studies but guidelines from this country's leading heptologists suggesting 24 weeks for unremarkable geno 2's and 3's.

That said, best of luck whatever route you take. As we say many times, tx is not a science and there's room for differing points of view.

-- Jim

[flavet]

I go to the VA in Orlando FL. The tx team has been doing this for some time now. I could run around and try to undermine their efforts but it would cause much discension. At this point I would do 2 shots a week and take 14 ribas a day if they wanted me too.....I was just whinning about how they burst my bubble on the length of tx.  Thanks for your insight.....I am so blessed to be able to correspond with like minded and afflicted people.

[jmjm530]

Fax this to your doctor:

http://www.hivandhepatitis.com/hep_c/news/120303_a.html

[jmjm530]

Is your doc a liver specialist who treats a lot of hep c patients? The norm is 24 weeks unless there're special circumstances such as previous treatment failure or significant liver damage. Not saying this is your case, but unfortunatly many doctors are not very knowledgeable about treatment. You might consider an outside consult.

-- Jim

[flavet]

That is what I was assuming also....total of 24wks.
It burst my bubble. I thought I was half way through.
Doc told me when I started that the jury is still out
on the 24wk plan. I told him that I was willing to do
anything....I really humbled up.
Now I'm backstepping....hehehehehe This aint nothing nice!

[jmjm530]

The 36 week formula is for geno 1's. Unless I'm missing something, most geno 3's only treat for only 24 weeks. According to my math that leaves you only 11 weeks left.

Are you a prior relapser or do you have significant liver damage (stage 3 or 4)? If not, I'd ask your doctor why you're on a long tx program.

I hear you about that poison. Stay the course but make sure it's the right one. :)

-- Jim

[flavet]

I want to jump on this one.
I was cleared at 8wks (3a)......My team says that they do 36 weeks after being cleared. That leaves me to do 44wks of tx.
I am in #13 and totally saturated with this poison. It is really dragging on me. Holding my head up!!!!!!!

[jmjm530]

Well, welcome to the discussion group and hope things are a little clearer. Please stay around and keep asking questions or just share your feelings.  We all started out confused and somewhat alone about treatment but eventually things do gel and sink in.

-- Jim

[Bliss68]

Thank you. That answers a lot of questions I had.

[jmjm530]

Cuteus,

You're right that you have to read between the lines in these studies.

But as far as "individualized treatments...increasing SVR", I have yet to see a study where extended tx increases SVR in naive geno 1's with minimal or moderate liver damage. The current medical recommendation is 36 weeks of treatment after being non-detectible.

I do believe the high-riba approach can increase SVR in almost any patient group but I don't know any doctor in this country who is either running high-riba studies or administering high-riba treatment with the experience and sophistication of the sweeds. In other words, dont try this at home. :)

-- Jim

[cuteus]

the trials have provided us with some numbers to play with, but ultimately you have to do a lot of guessing and individualization and listen to your gut. Research has given g1s a 50% chance of svr, those numbers included slow responders that did not clear by wk 12. Tx was almost always a total of 48wks.  There is always a chance of relapse no matter how early you become undetectable and even when you remain clear throughout the tx. It could be bevause of virus still remaining in scar or fibrotic tissue.  Some individualized treatments have increased svr odds over the 50% mark, they either used increased Riba or extended tx.  If a person is tolerating tx fairly well, they should aim to the longest possible time, if slow in responding and if damage is present beyond stage 1, interferon has been found to have antifibrotic effect. For some folks is not only svr but damage reversal that should be considered in determining tx length.
gl in the tx.