Any Relapsers?

Hi Everyone,

My 2 month post pcr shows that I relapsed......
Will talk to doctor soon to see what to do now.

Any relapsers out there to give me a hand?
ex: how to cope, what 2nd tx is like, etc.....

Thanks to all of you.

[Galen]

I don't know what to say.  I am devastated for you.  We went through it together and I feel like part of me failed with you.  I have no answers for you, just my thoughts and prayers.
Galen

[doll face]

I was on tx for 48 weeks (pegintron)and relapsed after 2 months also.I am a 39 year old female 1a. I went to the docs here in Tenn. and they told me not to worry about it cause my liver was still in good shape. Finally got my doctor in Michigan to agree to see me up there. He started me on Pegasys immediately.(72)weeks treatment. He said that they should have started me on tx here, while I was still used to  the sides. I just took my 21st shot of pegasys a few minutes ago. The sides are so much easier with the pegasys than I had with pegintron. I still have really bad sides the next day but so much better than before. Thursday was my first day on procrit (bad aches in bones sick to my stomach for the first day but those sides should go away after I get used to it. A lot of people ask why I would put myself through this again if I have already relapsed once, but I will do anything to beat this dragon. I know that there are a few more of us here that have relapsed so don't feel like you are alone.Whatever it takes to beat this thing. Hang in and don't give up.My prayers are with you.

[lucky1]

I will be having my 2 mo. post treatment PCR Dec 1st.
I am very sorry to hear of your setback. I have read that some Dr. like you to take a break for 6 mo. or so. I have also noticed that there seems to be a good success rate with re-treatment of relapsers. I think it depends on your circumstances. For me I had minimal liver damage and I am 54 yrs. old. If I relapse I probably will monitor my liver and wait for some other form of treatment.
Did you have a 12 week pcr? If so what were the results? When did you become undectable? How did you feel post treatment? If you had pre treatment symptoms have they returned and when?
I apoligize if this is an inapproiate time to ask these questions. But I am Near my 2 Mo. PCR and the closer it gets the the more anxious I get.
Good luck and I hope all goes well for you.
Marshall

[meandhepc]

Galen:   Thank You for your thoughts and prayers. I still
         have my fingers crossed for your pcr.


Marshal: I was undetected at my 24 and 48 week pcr. My main sx's
         were fatigue and body aches, still have them.
          

Dollface:  I was on Peg-Intron for 2 months then switched to
           Pegasys, I was on tx for 13 months all together.
           Am 1B and liver is still in good shape.


Thanks for your replies, I really appreciate them!

[raheem]

Bummer, I feel for you, but I don't know what to say except you did the right thing by treating Hep C.  Maybe another round of tx will work, maybe a new tx will come about soon, maybe you bought a lot of time by going through the tx, maybe you'll be just fine. I'm sorry you relapsed but keep your chin up, stay informed and see what your Dr. says.

[DoubleDose]

Sorry to hear about your relapse.  Go at it again, and beat it!!

I am also interested in hearing about your pre-tx symptoms, and how you felt immediately after completing tx...right up to the two month relapse test.  Any signs prior to the test that you had relapsed?  Any changes in how you felt from day-1 post tx through month-2?  Were you suspicious that you had already relapsed, or was the test the only real indicator?

I just completed 72 weeks of high dose Peg-Intron/Riba, and am one month post tx.  I felt great, clear headed, energetic, and fog-free for the first two weeks, then began having a variety of physical complaints, along with brain fog and fatigue through weeks three and four?  My fear is relapse, but my doc says it does not always present in this manner.  He feels most relapsers are symptom free during the relapse, and are unaware until testing.  I will be tested this week for the one-month post tx bloodwork and two PCR's (Quant & Qual).  I guess I will know something soon enough!  Much of my post-tx symptoms involve 'auto-immune-like' reactions.  Bone and joint pains, in back, ribs, neck, hips, etc. along with continuing fatigue, and some stomach/digestive problems.  

Hopefully you will beat this for good next time around, with better tx approaches coming along every year, and potentially additional drugs, or newer drugs to combo with.  Thanks for your feedback and insights.

[ral]

I really feel for you. You just never know when you get in the arena what's going to happen. You just do the best you can. I am sure you will get up off the mat and try again. I know it is not easy. I had hoped to be clear at 12 wks, I wasn't I was down to 120 from 1.5 million. I did have my 2 log drop but I still wonder maybe even if I clear at 24 (I'm on week 19) and finish up clear in the end I might relapse. This disease just follows some people around and I guess we will have to deal with it. It sure is something to worry about but we just have to keep on keep'n on and try to come back to FAITH.

God Bless
Bob

[ral]

Hi Galen

Glad to see your words.

Bob

[TravisB]

I'm sorry about your relapse.  I too relapsed at two months post TX.  I was not surprised because I was still feeling lousy.  My first reaction was to begin planning the second round of TX.  The news I got from researchers was mostly discouraging so I quickly got off the Interferon track.   I spent months recovering from TX although the TX itself was not that horrible on me. Srange, I know but that's how it worked out in my case.

Once I recovered from TX, I decided to deal with the symptoms of the disease which for me was  heavy fatigue and headaches.  I spent two months taking conventional supplements to no avail.  Then I turned to accupuncture and Chineese herbs prescribed by my accupunturist.   Although I was very skeptical and a near total non-believer within a month, 75% of my symptoms were gone and now at 2 months 90% are gone. My alts are down from 150 at the time of relapse to 61 now.  Still elevated but much better. I'm full of energy and more importantly HOPE.  This is not going to cure me of the disease but  it may very well help my body to deal with it on an every day basis.  That's all there is right now and I'm enjoying it.

Try not to despair.  Figure out another way of fighting this disease and make sure you keep fighting.  Yea, it would have been nice to be one of the lucky ones and succeeded with Interferon but that's not for everyone.  Take some time to recover from this   blow and than prepare for the next battle but for now, just try to get it all in prespective.  Good luck to you. Travis

[Ambush]

Oh boy, I've tried to play out that scenario in my mind and how I'd take that news ~ just to prepare myself for the 50/50 chance.  I'm so sorry you had to hear those words.  Just remember: When the goin gets tough, the tough get going.  
There is much hope ~ don't lose sight of it.
ambush :)

[lackalustre]

travis:  what kind of research did you find on retreating relapsers with interferon/riba?  id be interested in statistics, percentagers of responders with more treatment with genotypes, etc... thanks  glad you are doing well and energy returned.

[TravisB]

I spoke to several researchers who seemed knowledgeable.  At the time the one question I had was would an SVR rid my of my symptoms or just stop the progress of the disease?  Their answers were that an SVR might but they had no solid evidence of this and one guy gave me a flat no.  Also, they were going to double the time I did on the first TX although many studies have shown that this method adds very few additional SVR's than the standard TX.  

I did all this research a few months after TX when I believed that Interferon was fairly harmless on a long term basis.  So at that point I was considering   doing some more temporary suffering for a chance of SVR.  As time passed and I saw that the negative effects of Interferon were lasting much longer than I had anticipated I decided that I wouldn't do it again without a great chance of an SVR and absolutely no one I spoke to was offering that.

This is just me.  Everyone is different and there are people that hardly had any after effects from TX, and two months later they had at least cleared the sides whether they SVR'd or not. I don't want to do too much bad mouthing of Interferon because I think almost everyone should give it a try and hope to get lucky.  It's just the second time that I won't do unless new and much improved drugs arrive.  I know that's a long way off and I also know that the alternative treatments are a long shot but on the second time around, so is interferon and at least the alternatives aren't tearing me up.

[simpleman]

I think you've made a very sensible decision. You realize you aren't getting rid of the virus but treating the symtoms (symptoms). I too would not retreat.  I just don't think the benefits are worth the risks. I think "bean counters" probably have a name for it like cost-benefit ratio or something along those lines. I think I could stand it but I think too much damage would be done to my marriage, relationship with my 3 daughters,finances,business, etc. When you look at my past life all I have now is just a bonus anyway. For what it is worth I would make the same decision as you. I only have 4 days left until shot 48 and then I'll be clear forever(positive attitude can't hurt). Good luck.

[raining]

Just curious as to what Chinese Medecines you are taking. I am also trying to reduce my symptoms and have just invested in 8 month's supply of Dr. Dhang's No.2 formula. I've only be taking it for a week but I haven't noticed any energy inrease at all. Would you mind listing the ingredients? Just curious....

Thanks!

[TravisB]

Simpleman:  What the acupunturist that is treating me says is that I have to learn to live with this bug and keep my system balanced despite it's presense. So far it's working but only time will tell.  
You're not going to need to think about re-treatment because you will SVR on this one. Best of luck. Travis

Galen: Thanks for the good thoughts. Yes it has been amazing and I'm jumpin out of my shoes with energy.  For now I'm taking it one day at a time.  Hope your recovery from TX is moving along and of course, that you stay clear. Travis.

PS How does one contact the administrator of this site to complain about someone overposting? (Some jerk used 4 posts yesterday to say the same thing.)

[TravisB]

I am embarassed to say that I don't know the name of the herbs.  They are written out in Chineese and I then go to a shop that sells Chineese herbs and get my script filled there.  I will try to find some phonetic spellings and post the for you. One thing I'm doing alot of is American Ginseng but that's a fairly insignificant portion of my tx. The thing to remember is that herbs that work for me might not work for you.  

Speaking of that I have a suggestion for you: If you can, go to an experienced acupunturist and let him take your pulses, look at your eyes, tongue etc and then let him presecribe herbs for you.  Each body is different and I would not be keen on taking a one size fits all formula.  I think alternative TX need to be tailored to the individual. Just my opinion

Good luck. Travis

[willing]

sorry to hear the news. I hope you can take some time in your life to absorb and adjust to this setback. As I see it, the good news is that your fibrosis is still in its early stages - this gives you time. The enemy is not the virus, it's liver failure. You'll probably want to take some time to track the effects of tx on your liver and post-tx viral mix (monitor ALT/AST, think about a follow-up biopsy). I'd talk to my Dr. about following an anti-fibrotic regime similar to the one in BobK's post from a couple of days ago.

Personally I'm with travisB and simpleman - I don't plan to go down the retreat path until the data proves some benefit for 1 combo relapsers. Roche's results from REPEAT  should be available within two years and Schering is starting a similar study. The current lack of data makes retreatment of 1 relapsers from peg+riba combo tx a shot in the dark. The longer you can keep the scarring at bay the longer you have to plot a sound course. Best wishes, stay positive.

[Galen]

Hey guy, it is good to hear that you are feeling so much better.  It sounds like the mental thing is a lot better, too.  I am glad for you.  Hang in there.

[newb]

Hearing news of relapsing makes my heart hurt. I very much admire your  willingness to move forward and lack of self pity. My best to you all.

[TravisB]

I see him again next week and will try to get a list of the herbs. FYI other than the American Ginseng, the herbs are different every week.  I don't think I've ever done the same herb two weeks in a row.  

How is your alternative tx going?  Did you have symptoms before starting and if so,have they abated? Travis

[MajNeni]

I am so sorry to hear your news.  I hope you have recovered from tx and feel better overall.  You have done the best possible job with tx.  
That bloody dragon is awfully stubborn and tough.  Hopefully you will find a course of treatment to take out his teeth, fire, stingers, and claws...
Maj Neni

[raining]

Thanks for your reply. I am seeing an acupuncturist albeit not a very experienced one (and I live in a place where they don't have acupuncturists available so I have little choice). However, he recently visited New York and spoke to Dr. Zhang who suggested the No.2 formula which is the most overall common one.

The way you're doing it is exactly right. In Chinese Medicine, you should be treated each week according to your exact symptoms. I am just not in a position to do that which is why I am so curious about the main herbs your formula has.

If you remember to look them up, please e-mail ***@****

Thanks again

[Galen]

To report problems with this site, go to
http://www.medhelp.org/
click on 'Contact' in the upper right corner, and fill out the form under part 3.  
I wasn't successful in getting mako 7 deleted, but was able to get us some extra threads.  I call that a huge success!!!

[MKAndrew]

I'm extremely sorry to hear about your relapse.  The questions people are asking you are to try and help you sort out what may have happened.  I just returned from the AASLD Liver Meeting in Boston.  The consensus there was that the most common cause of relapse is dose reduction.

Dose reduction can mean a couple of things.

1. Cutting back on ribavirin because of blood cell counts or psychiatric side effects.

2. Cutting back on interferon for similar reasons.

Since it sounds like neither of these happened, there is also a third group to be considered as "dose reduction."

The ideal situation for a geno-1 is to clear within the first 12 weeks, then continue therapy to week 48.  However, let's say you clear at week 24.  If you only go the 48 weeks after that, many doctors now consider it a dose reduction - they didn't keep you on interferon long enough.  My own doctor's theory is to count whenever you clear as week 12, and count 36 weeks from there.

Of course, there are also people who clear with EVR, then relapse anyway.  The good news is that the AASLD meeting I attended stated that all relapsers are good candidates for re-treatment, because of their obvious sensitivity to IFN.

Wishing you every good thing,

Miles

[Merlin51]

I too am a relapser and have decided not to re treat at this time..  I was clear at 8wks but oh well...the sides and longterm physical harm to my body freaked me out-my joint pain is still there too...

I live in Hudson Valley and I am seeing Dr. Zhang once a month and get accupuncture and herbs from him. He is real good and my MD actuallty recomended him!  

I am on month two now and circulation-p ,Hepa F 1a, Linguistrin  amd Gall.#1... he based this on my blood work and a physical exam- even looked at my fingernails!

I am feeling better - my wife and son no longer cringe when I speak to them (I was a real nasty dude on tx)I am on my lifcycle bike every day and love it- could never do that if I was re treating...

Only concern is that I am F3-4 from last biopsy-the hope is I can enhance my liver's ability to regenerate..... any ideas on that?

[raining]

My main symptoms are a lack of energy, heavy limbs, weakness and general feeling of unwell (I feel like I am walking around with a wet towel wrapped around my head - not quite "with it").  I sometimes feel nauseuos and dizzy and am irritable.

I have weird ALT counts: sometimes they are normal but often they are as high as 600.

I always know when my ALT counts are high as my symptoms are worse. I've had several blood tests done to test this thoery and it is true!

merlin51  - I wouldn't trust Chinese Medicine to regenerate  your liver. My own personal belief is that Chinese Medecine might relieve your symptoms so as to slow down the damage to your liver (perhaps). However at your level of damage are you considering another form of tx?

[Merlin51]

I would love to explore other tx. I saw a HCV Specialist in who says since I am an EVR I should go back on tx  but pegasus this time. He felt I should have stayed on tx longer since I am 1b. I needed to give my bod and my family a break .  The mental sides almost cost me my job too.  He suggested I consider lower dose maintenance tx to keep viral loads non detectable etc etc.  I am not opposed to a joint effort of Chinese and conventional tx....may consider that after six months when I see my full bloodwork results .  Also hoping for new tx's to do better job and hope that is not a pipe dream!
  What do you think?

[Merlin51]

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[raining]

I wouldn't advise you to take chinese medicine and tx at the same time. No one has done any tests to show that the two combined are not harmful. Have you spoken to Dr.Cecil who I have heard works out individual programs for non-responders on their second time round? Someone on this site will know his web site or do a search.

[nyredheppern]

Yes `.  I am so glad I found this thread.  I feel like the only one.  44 weeks on pegintron combo therapy.  Cleared by week 12 treatment made me sick and crazy.  I relapsed by the first blood test 4 weeks post.  This last year was so taxing on me- I had to stop tx 4 weeks early.   I live in NYC.  I was having arguments and altercations eveywehere- and when I wasnt ranting and raving (the two/three days after the shot I was sick in bed. I can't beleive it was all for nada.  Now I am 3.5 months post tx.  I'm no longer crazy but I feel worse than I ever did before tx.  I am always tired, I have pain in my liver ( i never had this before)and I am really thirsty all the time. Will I ever feel healthy again??????Does it get better???????

[AK - Hepper]

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[AK - Hepper]

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[AK - Hepper]

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