2 years of treatment and virus is back

[iland]

need2know,

I am sorry to hear about your relapse. Here is my story (I too have relapsed and I am about to treat similar to the loooong plan you described):

I started posting here in Feb 05 and started treatment in April 05. I am 1b with a 450,000 vl at the start of treatment. I was 389 VL at 12 weeks, 15 VL at 24 weeks and 0 VL at 32 weeks. Becuase the VL was not at 0 at 24 weeks my doctor recommended extending tx 6 months beyond the point that I showed 0 VL and I agreed. I ended up doing full doses of Peg/CoPeg from April 10 2005 through Dec. 18, 2006 for a total of 21 months.

I was zero at the end of treatment and at my 3 mo check I was at 750,000 VL (I started at 450,000). So I am what you call a relapser!

The plan now is for me to start Infergen/Ribavirin July 1, 2007 and do full doses for say 6 months (assuming I hit 0 VL, then cut back the doses and stay on treatment for 2-3 years (or more?)

I have heard about this before and did not read much about it as I was keeping a positive attitude that I would not relapse.

So the bottomline is that you are not alone....

Steve

I appreciate all that have responded to my last post. I am very new at this. I must admit that when I was first treated that I was under the assumption that I would do treatment, it would be over with, and that life would go on. I never did the research that I have been doing now, since I have been told that I had relapsed. It is still a very confusing illness.
Some of the things that you guys have posted to me...I am not even sure what they mean.

My doctor, who has spoken all over the world on Hep C said the reason  I had to be treated for 2 years (initially) was because my blood levels dropped so much and so often. I became very anemic and had to be pulled off ribrivarin many times...and many other times the dose had to be dropped. He told me that tx only worked with both drugs together (Pagasus and Ribriviran). That is the reason I had treatment for 2 years. He said at this date in time that when ever you have to do treatment for a second time after a relapse that you have to doubled the time that you were on it before. That is where the 4 yrs comes in.

As many of you have suggested..I do have an appointment at the University with another specialist, however, I could not get into this doc until July 20th. I am suppose to start second round of treatment at the end of June.

HAS ANYONE OUT THERE EVER RELAPSED??? I HAVE BEEN TOLD THIS IS DIFFERENT THEN A NON-RESPONDER.

So many of you that responded back to my first post seem to be veterans..I am so new at all this and just wished I had gained more knowledge before I was ever treated the first time.

I did find a good support group, went for the first time a few weeks ago. It is only held the first Tues. of the month.

Any new ideas would be appreciated.. I am getting nervous, when I know that I should be trying to reduce my stress.

Claudia

[need2know]

Well, I have seen my doctor and asked if I could not wait until new drug comes out. I actually am going to another specialist at the University, but can not get in to see him until July 20th. I want to see if he would say the same as the doctor that has treated me for over the past 2 yrs.
My niece whom is a doctor and sister whom is a nurse said that it wouldn't hurt to get the second oppinion. I just don't think I could do 3-4 more years of tx. I don;t think that I can put my family through it again or for that long.
I will keep all posted as to what the new doc says.....
Wish me luck!
Claudia

[need2know]

Thanks Missy. I also talked to my doctor about that when I was in his office. He said that could be a possibility. He didn't think it would be in Louisville by Fall, but perhaps I misunderstood him.
Thanks for your post.
Claudia

[jody13]

Claudia, Sorry to hear of your problems. This ios why I haven't taken any meds for treatment. I have trustedf herbs instead and low and behold I think they are woprking. I go back in August for another liver test. . My viral load was over 5.5 mill last time.   I use 3 herbs , Max thistle , livercell and one called SST. I feel good and never had any real symtoms that I could say for sure it was hep C.  Doctors don't go for this herb route to much. But I'll stick with it as long as I can. Good luck on what ever you decide. Jody 13

[Hank's mom]

Dear need and iland:
I am a nonresponder. (start at 2.2 mil vl, 3 mos. interferon x 1 per week/ribi.x daily, then 3 mos. infergen x daily/ribi. x daily, then 3wks low dose peg. x 1 per week.) Anemia was a big problem for most of the treatments though not as bad as you. Sides were worse on infergen as daily dose gave me no time to recover. Peg was also not good. I called about getting in the Vertex study and was nixed because you must take the standard interferon/ribi mix along side the Vertex. My biggest problem is dangerously low platelet count. I also have esophogial varises and cirrhosis, both of which are from the hep c dragon. That puts me at greater risk with my low platelet counts as I could bleed to death internally.
I wish you all the luck with whatever treatment or path you take. I too would be very hesitant about going on such an extreme long term protocal and even if you did would take as much time as possible first to regain your strength and overall health. It seems to me going in with a weak system jeopardizes the entire equation and as hcvRn said your liver damage may have been reversed or at least halted by the treatments the virus didn't respond to. My docs have told me that the viral load is only one yard stick. In my case the damage to be liver has been at least halted for now though my vl is back to pre tx levels.
All the best,
momxfive

[kentucky]

72 weeks is now the standard for high viral loads type 1

48 weeks for the other types 2,3

I know this because I saw a professor/dr. at Duke University to get a second opinion.

[19Dragon52]

OMG!  72 weeks?  Yuck!  Thanks for the update, though, Kentucky.

Sure hope my 1 year blood work (Sept) comes back with a continued SVR.  They'd have to book me in at the nearest insane asylum or write another movie similar to "The Shining!"

I feel so bad for those on the board that have had that 72 week stint.  I have to honestly say my heart bleeds for them.  If this becomes the "norm" I'm concerned for all of us!

Love & Happiness For All Of Us.....

             

[need2know]

Hey guys, What are some of you others viral loads? Before treatment mine was 10 mil, it is now 14 mil 600 thousand. Momxfive what did your doc mean that the viral load was only a yard stick?? Was he talking about liver chemistries, fibrosis, etc??
I know that I would not make that long of a treatment. I stayed bid ridden for the last 7 mos of my last treatment.
Still as ever.......need2know!

[Helen]

need2know,
 I think Mom meant that its really only used or good for as an indicator for treatment. It really has nothing to do with how much damage is done. Some people have very high loads and very little damage and visa versa.

 Keep us posted.

 Helen

[Hank's mom]

kentucky: I also heard that 72 weeks is the new standard for tougher/more resistant cases as well as the toughter geno's. On the good side of that news, if levels normalize sooner and stay clear there is a chance of shortening the time. Don't quote me, maybe it's just my pollyanna sense of ramaining hopeful.
And yes, "one yard stick" does refer to the many faces of reading the reports. There have been times when I was alarmed at a high vl and came to find out that my liver was showing positive improvement. I think each of us has our own equation and a good doc will answer your questions and fears concerning that.
In the meanwhile, son't lose ground on getting strong for the next round. I really believe you'll feel the difference.
Be well,
momxfive

[iland]

Sorry to hear your news and I can relate,

After 21 months of Peg/Copeg treatment and 3 months post treatment I relapsed, the first signal being joint pain and severe fatigue. Had blood checked and came up with a VL of 750,000 (my VL was 450,000 at the start of treatment).

My doctor () a rumatologist) diagnosed me with HCV Arthritis. He said in the beginning I had Rheumatoid and/or Lupus, but in the end my RF was high (not much) along with sed rate and ANA > 1280.

With these numbers he is calling it HCV Arthritis. My symptoms are swelling of my fingers everynight to the point they do not open and close when I wake for a few hours. Also elbows, shoulders, ankles, knees, back, & neck all get into the game everyday as well. It only takes a short time for me sitting and I apparently swell along with joint pain in a big way.

I have begun daily Infergen shots this week for 3 years and hope that tx sticks this time.

Hang in there,

Steve

I just finished 2 years of standard treatment for Hep C in Nov. 2006.  In Feb. my labs showed that I had relapsed. I had maintained an undetectable viral load during treatment and couldn't wait for the day the treatment ended. For the final 6 months of treatmen I was bed ridden. I took 80,000 of Procrit weekly, many times had to reduce my dose of ribravarin and on most days I couldn't have cared less if the sun went down or came up.
I have a very supportive family that has been by my side thru this whole ordeal. I don't know what I would have done without them.
My new treatment option, as I have been told is 4 more years of that god awful medication with hopes that it will be reduced to 3 years when Vertex is suppose to come out (in 3 years). Anyone gone thru the same thing?
I have been told that I have the option to wait until VX-950 comes out, or to go back on treatment in June which will have given me a 6 month break in treatment.
Can anyone help, PLEASE!!

[MissyMouse]

Steve,

I found your post about HCV Arthritis very interesting.  I came down with Rheumatoid Arthritis 3 months before my treatment ended.  They originally thought it was gout.  I was seen by a rheumatologist 1 month before treatment ended and I opted to hold off on any RA testing until I was done with treatment (I didn't want to be "pulled" so close to the end).  My end of treatment PCR came out negative and 3 weeks after treatment my RA factor tested positive.    I had been going through my medical records to send to social security for my disability claim and came across blood work from 2002 that showed I tested positive for RA back then but I was never symptomatic.

3 months before treatment ended I had one episode where my hands got so red, swollen, hot and painful that I wound up in the ER.  They got that episode under control with removable casts and pain medication but it reoccurred several times.  1 week after treatment ended I had another severe episode involving my hands, 1 knee and both feet that again put me in the ER. I've also developed the nodules that are seen with RA on my elbows. I too suffer from relentless fatigue with the RA.  I am now being treated by a Rheumatologist and am currently taking methotrexate and humira. 

Good luck to you with your joint isssues.  I feel for you.

Missy in Florida

[need2know]

Hi all,
Just want to let everyone know that I am going to the specialist at the University on Fri the 20th for my second opinion about if I should go on a 3-4 yr re-treatment.
Just reading thu all the posts and am thinking about you Steve. Forgot that you were going back on treatment July 1st. I hope all is going well for you. I also did not pay much attention to aspects of my arthritis until I was reading your post. My hands as well get bloody red and hot and swell. My internist wanted me to go see a dermatologist back in Dec., but I had just finished tx and had had my fill of docs for awhile. Can this really be something to do with HCV........darn, what else!!! Anyway, as you all know, I have been seen by a pain management group for over 4 years. They still want me to have a pain pump inserted, but I am not going to go that route just yet. I have had several spinal surgeries and I am not ready for any other surgery of any type, but it has me wondering if much of my pain is not what Steve's doc said "HCV Arthritis". I think I will talk to the new liver doc about this tomorrow. I have never had pain severe enough to send me to the ER, but close.
Anyway, I will let everyone know what the new doc says. I am told he is from Peru and very hard to understand. I have had to wait 3 1/2 months to get into see him so I hope he answers my page long list of questions to where I can understand what he is saying!!

Good Luck to all,

Claudia 

[jody13]

Newbe, Your relapse is the same reason I didn't go with treatment. I went the herbal way. taking several herbs that build up my amune system and hopefully lower mt viral ct which was up to 5.5 mill. every other test was perfect. . You may have already started your treatment?? Any way good luck on what ever you desided. I have no side effect from the herbs. Jody13