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394687 tn?1290920840

Serious Question from Mikkimoe

May I borrow your brain power and research expertise....Rational decisions are getting difficult these days.

As most of you kind of old timers know I have had a pretty tough go at things (week 11 of 24 weeks, 2B). I went into this very strong minded but weak bodied. Having Severe RA to begin with - that was relatively under control....but no longer is. The dreaded autoimmune syndrome has hit me hard. Total lock ups...pain in up to 30% of my joints at once. Pain scale off the charts about two to three days per week. Pretty much totally bed ridden. Docs are concerned and have backed meds down to almost 1/2 and have added anti-inflams, more steroids, mega pain meds etc. Joints are deforming in front of my eyes....

.....so here's the question...
In your vast experience what is the shortest time frame of TX that anyone achieved SVR as a 2B that was UND at 3.5 weeks? If I make it to 12 weeks is there anyway I will stay UND?  I am going to give it my all to hang in there to week 16 but if I can't what are my odds?  I use to just start researching till I figured it out...but it took me all night just to write this...fingers don't work...let alone brains.

Thanks much,

Mikkimoe
27 Responses
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220090 tn?1379167187
I think this decision is so complicated and so serious that the decision can only be made by you and your doctor.

I recently watched someone I cared about go through a hell worse than anything our TX can do, so that he could have another month to live.  I would never have made that decision for myself; I guess he held the quality of life to be less important than life itself.

With most of us, the decision is not so short term; our disease is slow moving.  This makes the decision much more complex, since it is likely other treatments that are not so toxic are likely to become available and might be worth waiting for.

In the end, it depends on the severity and rate of progress of your disease, the probability of a change of outcome by stopping early and your family situation.

No study can help you with that and no one on this board can know the answer either.  The board members are very helpful by giving you access to more information and their opinion, but in the end the decision must be yours and your doctor's.  

You have made a considerable investment in this treatment, so you have to decide on the likelihood that the pain so far might be for naught and weigh that against permanent damage from the drugs.

I wish you the best in these difficult times, and I look forward to meeting you at your SVR party!

Take care and rest so that we can go sailing together!
Eric
Helpful - 0
408795 tn?1324935675
I hope your new modified tx plan works better for you, maybe you can stay on the tx for a little longer.  It's a very serious decision to get off or to adjust, I hope you found that happy medium, well maybe not so much a happy medium, but a plan you can live with a little better.  You really have to watch out when you have arthritis, I have osteoarthritis, but I can't even imagine what sx's you are going thru with RA.  I wish you the best with your new revised plan.  God Bless
Helpful - 0
394687 tn?1290920840
Hi again - and again thank you for your insights, stories and warm concerns....just getting on today....oh guess it's tomorrow...I really do have to get my nights and days figured out - but with the record heat here in So. Cal i think I'll just keep it this way.

So spent the whole night tearing myself up about this...should I stay or should I go now keep playing in my head...really it was - you idiot you made it this far what the bleep is wrong with you - what's a few twisted fingers and toes and painful nodules everywhere..... Sooo today When I had the doctors pow-wow here's what we decided. Seems that the Enbrel injection reactions are far worse then the Peg as far as sx so we are dumping it completely (2 less shots per week - cool) It stays in your system for a month or so - should get me to my 16 wk mark. Were going to 90 on the peg and between 500-600 riba depending on how I feel. I'll tell you what - I should of been flat out today (after enbrel shots) But I feel much better...maybe the placebo effect huh?

Cabanna boy (hubby - life line) had to leave town this weekend for work. He couldn't cancel this one.....I kinda panicked at being home alone...nice to see I really wasn't alone at all....had my buddies here on line....we'll actually your probably all asleep.

So here's to picking the sword back up and not accidently cutting my foot off with it before slaying the dragon.

Hugs...mikkimoe
Helpful - 0
250084 tn?1303307435
Don't ever feel like a whiny baby in any of this, 24 weeks is hard tx also, while not as long as 48 weeks, 72 weeks, etc.  Trust me, knowing I 'only' had 24 weeks did not take my sides away! I was out of all jobs by week 5 thru out tx.
  Your do have time to weigh it all out, despite that new mailbox :), it's always good to have time to decide, do research.
  I'm off to work soon but I'll PM you later on. The Dr. I refer to is head of research, 5 titles (if not more now!) excellent Dr. He had told me that he'd never treat me for 48 weeks and that 8 or 12 week tx for Geno 2's is around the corner. This is refering to triple therapy now in trials, I think mostly for Geno 1's but I'll have to do some research in the trials on Geno 2's. (someone here knows?) but we had several conversations on the shorter tx for Geno 2's and Geno 1's thru out my tx. I treated ASAP as I was stage 2 (borderline 3) on the scale of 1-6, which really is mild/moderate damage but at 49, the trial was right there, the odd's were good, we decided to treat now (last year).
  Mikkimoes case is one of many where the damage may not be 'worth' the cure, the sides just too much, brutal. BUT....being Geno 2, your (Mikkimoes) odd's are still very good, even at this point in tx.

PM you later and Mikkimoe.......thinking of ya', LL
Helpful - 0
Avatar universal
Mikki, I just have this feeling that whatever you decide is in your best interests, it will all turn out just fine.  Just please don't put yourself at too extreme of a risk for the sake of clearing the virus at early stage liver damage.  It's not clear the virus at ALL costs.  You ARE a good candidate for waiting for new drugs that are coming and there are so many that are being looked at these days .  I too believe in quality of life.  While that may sound like I have a particular opinion on what you should do ... I don't.  That is an intensely personal decision.  What I have is a desire for you to be okay, whether that means okay with HCV for awhile longer or okay without it.  And, I think the person you are WILL be okay either way .... so do what is BEST for you, Mikmo...and have peace.  And.. my money is on the SVR regardless of when you decide to stop treatment.  :)

Thinking of you, sugar.

Trish
Helpful - 0
439539 tn?1233465815
I wish I could help but I can't.Just wanted to let you know your in alot of thoughts.I pray you find the strength to make the BEST decisions.
Tammy
Helpful - 0
Avatar universal
Mikki,
I'm so sorry that you're feeling so bad.  Hopefully, once you finish tx and achieve SVR, your good health will be restored.  Anyway, I'm another 2b who had a truncated treatment - 12 weeks of riba and an additional week of INF alone - and was pronounced SVR after that excruciating 6 month wait.  But with an UND at 3-1/2 weeks, you're probably going to win at this game.  I'm praying for you.
Love,
pigeon
Helpful - 0
Avatar universal
Hi LL.  I've not posted in a while, but you perked my interest regarding you doc saying
"My Doc said 8 weeks tx is around the corner for us 2b-ers!'

I have minimal damage 01 / 01, 2b and very few and infrequent sx.  I have been sitting the fence of decision so long that I've now put up a mailbox and install a/c.  The news that I've search for is  the trial data seems to be geared to reducing the tx time for GT 1 and increasing the SVR % (which is most excellent).

None-the-less, I have wondered what the newest drugs coming out would mean for us 2b folks and if waiting shouldn't be my choice - which I've been leaning toward since I first read the sx and potentially lasting effects of SOC.  

I appreciate your later post to remind us that the current tx is 24 weeks.  I just hate sounding like a whiney baby in the footsteps of those who face a much more dire prescription.  My GI doc is amazed that I won't commit since I'm easy-breezy to treat, healthy, and still young at pushing 50 :(

The gist is that I'm so overly worried about my job (which I must and want to keep) that the possibilty of being the most unlucky of folks and having every sx available keeps me pondering the 'do I do' or 'do I wait' on a a daily basis.

Can you point me in the direction to see the forward-looking data on what's in the pipeline for 2bs or pass any info, personal perspectives, or just any stuff anyone would care to share.

p.s. Mikkimoe - you are in my prayers... I'm a fan that has been rooting for you from my closet for some time now.

~..~ vlm
Helpful - 0
250084 tn?1303307435
Forgot a thought:)

I think your at 600Riba, 135 peg...right?
Can you discuss with your Dr. reducing the Peg again and I also have studies stating even 400mg Riba (WITH RVR at 4 weeks) is also ok. Perhaps you can reduce again to get a few more weeks in? Just another suggestion.

NOTE!  I want to add for all Geno 2, 3's.....that while I had to reduce and we do discuss it when it seems an absolute must...please don't read these threads and get the mind set of 'well I can reduce too' due to the 'normal' sides on tx. At this point in SOC it is 24 weeks, full dose's that 'cure' us. Reducing is not suggested by me in any way unless serious circumstances. Until new tx's are out, please do as your Dr. says! I have had many Geno 2's PM me on this and while sometimes it is done to keep us tx-ing longer or to reduce serious sides (while they all seem serious, you get my drift there), I don't want to 'push' reducing as a standard.

Feel better Mikkimoe!

LL
Helpful - 0
250084 tn?1303307435
Hi girl, I know you are really struggling here :(

I posted already (other one) on how I had to reduce twice and I (don't think!) I have RA and was bed ridden a lot and serious body pain thru out tx soooo....my heart goes out to you in the pain you must be going thru.  Week 6 I was reduced to 600 Riba, 135 peg, by week 15 I was at 600 Riba, only 90 Peg for the remaining tx and just got my 3 mths. UND last week. I have read MANY studies that 2b's do very well at even 12 weeks, tho better going to 16 but you really do have to think of how much damage this will leave you. My Doc said 8 weeks tx is around the corner for us 2b-ers! So IF, God forbid, you don't clear, it won't be long before there is other options for you.
I am also worried about you, with all you have going on and how much I hurt on tx without all that going on!

While I want to say 'keep going' to 16, in your case it may not be the best choice. Missy , others mentioned it can cause permanant damage, not worth it at this point.
  
I'm sorry you have to decide this and going thru all this. I'll be hoping, praying, wishing for you to clear no matter when you stop.
Keep us posted.

CS .....glad to see you in this thread, you were a big help to me thru my tx and studies you sent.

LL
Helpful - 0
446474 tn?1446347682
This paper from 2007 may answer some of your questions..

Chronic Hepatitis C
Strategies for Optimizing Current Treatment and
the Potential Impact of Emerging Therapies

http://www.medicalcrossfire.com/onlineLearning/cme/2006/06-LC-27-M-100.pdf

...The fourth study, the ACCELERATE trial, was coauthored by Dr. Shiffman.15 “It is
the largest of the four studies and included 1,469 patients with genotypes 2 and 3,” observed
Dr. Di Bisceglie. The patients were randomized to receive PEG-IFN alfa-2a plus
ribavirin for either 16 or 24 weeks. “This study was large enough to allow us to compare
responses in genotype 2 and genotype 3,” commented Dr. Di Bisceglie. Among patients with genotype 2, the SVR was 65% at 16 weeks and 82% at 24 weeks. Among patients with genotype 3, the SVR was 65% at 16 weeks and 71% at 24 weeks. Remarked Dr.Di Bisceglie, “Treatment response rates were consistently lower with 16 weeks of treatment.”
Having reviewed the data from these four key trials, Dr. Di Bisceglie drew the following
conclusions regarding the treatment of patients with genotypes 2 and 3: “First, 800 mg
of ribavirin a day is sufficient. Second, there are conflicting data on SVR rates when the
treatment duration is less than 24 weeks. Finally, some of the variables that may affect
response include the difference between genotype 2 versus genotype 3; the presence of
hepatic fibrosis or cirrhosis; and viral load.”

Hope you feel better soon.
Hector
Helpful - 0
92903 tn?1309904711
From what remember about the short tx studies, the 12 week one was done with PegIntron and the 16 with pegasys. I don't know whether pegasys would have done any worse that pegintron, had it been researched for 12 weeks tx.  

I don't think they used ultra sensitive PCRs for the 4 week check, so if you had a TMA, for example, that works to your favor.

You have no reason to put yourself through anymore, especially if you don't have severe damage.

    
Helpful - 0
394687 tn?1290920840
I really feel like an incredible weight is being lifted....I know it is ultimately my decision but I need to feel good about making it and being  informed and supported and encouraged was the part of that process I was missing.

My Rhumatologist and Hepatologst are consulting with each other today on my situaton and will be getting back with me as well.

Pain puts you into a world that is so surreal - you play games with your mind, you try everything...heat, cold, pills, hypnosis, eventually you are just a slave to it, having to follow it's every whim....I trully believe it's all about quality of life - not quantity. If I can ride my horses pain free for just 5 more years I would take that over 25 more years in bed anyday!

You guys are really great and I want to thank you from the bottom of my heart for being here for me.

I love hearing these success stories - if there are more please keep them coming.

Hugs,

Mikkimoe

Helpful - 0
217229 tn?1192762404
Mikki - you're amazing to be going through what you're going through and still hanging in there!

I've read rifleman's posts - and I think that gives you hope and a possibility for a chance at SVR.

The odds appear to only be lowered into a very small percentage.

If the TX is making the RA get to you to the point of deterioration - then you need to choose how long you can handle it.

I believe the INF kick starts the body - and makes it "age" along the disease progression line.

For example if you were going to get RA at 65... the HCV and the INF will make that happen at 45 - instead.

It's like it appears to unravel the DNA for age related diseases that were normally going to happen - and makes them happen sooner... So they are much harder.

Just my opinion on it --- but read Dr. D's response to Debnevada... It echoes sentiments I've had on this very topic for many months.

Honey - whatever you decide --- we're here for you and with you in mind and soul.

Love you!

Meki
Helpful - 0
412832 tn?1219075345
I wished I'd made it as long as you have!!  I had to quit early at around 8 weeks because I could not tolerate the terrible sx I was having.  Like you, I was 2b and was trying to make it to 24 weeks.  

It's a painful decision, deciding whether to continue or not.  This is a decision that only you can make, of course.  Getting some feedback and statistics never hurts, and I like what I've read here so far...

I will be checking my 3-month VL next week and am hoping that I may have eeked out an SVR after my shortened course... (I LOVED hearing that someone cleared permanently after only 19 days!!!!  I know this is not the norm, but it helps me stay hopeful...)

Good luck with your decision Mikkimoe!

pK
Helpful - 0
223152 tn?1346978371
mikki - nothing else to add to those who have responded.  I Think overall  health needs to be considered.  There was another member - artgal - who terminated treatment early but I don't know if she remained UND.  Rifleman, as far as I know has remained clear on the 12 weeks.  

cando -- off your honeymoon and back to research, are you?  Good to see you post.  I waved to your from an airplane a few weeks ago -- did you see me?  Back to the hot weather of west Texas again.  Have you ever heard of a heat burst?  We had one here 2 nights ago.  Temperature rose to 97 about 11:30 at night, winds to 67 -- The heat evaporated what should have been a rainstorm, and the winds - in their microburst severed 13 utility poles just a few blocks from the house.  They still have the streets blocked off to fix it all.  Weird weather phenom.

Jim - rabbit food, eh?  Doesn't sound like much fun.  Don't understand cholesteral myself but I am afraid it is more a factor of genetics than it is what you eat.

frijole
Helpful - 0
254544 tn?1310775732
I'm very concerned about you.  (I know I've told you that before ... smile).  I was warned before I even went on my second round of tx that if my RA flares to severely that I would HAVE to stop treatment.  Shands at the University in Florida in Gainesville flat out told me that interferon is contraindicated in people with RA.  The only reason why they let me treat again is because I have advanced damage (Stage 3/4, Grade 3) and I really didn't have much of a choice.

I have only been dealing with "active" RA for 13 months as opposed to your 13 years. (I did test positive for the disease backin 2001 but was never symptomatic).  I will hide the "baby flares" from my doc but if I start having severe flares I would definately come off my Hep treatment.  It's not worth the damage it can do.

Hugs,

Missy/Mouse
Helpful - 0
Avatar universal
Good to see you as well friend! Putting away the steaks and a little bruski :) Wish I was but eating like a rabbit lately to get my cholesterol (and belly) down! How are you feeling these days btw?

-- Jim
Helpful - 0
Avatar universal
I have a friend (a 3a stage 1, grade 1, 264,000 starting viral load) who was rvr at 4 weeks and had to stop at 9 1/2 weeks of tx..she is still clear and that was 2 years ago...
Helpful - 0
Avatar universal
For what it's worth...
I don't have a study...but I ask my dr about extending my tx to up my odds of svr.  I am 2b and a rvr.  He told me no, he would not extend my tx.  He said the latest studies show that if 2bs reach und and are rvr tx can be shortened to 12 weeks.  He is at UT Southwest and has conducted many studies/trials.  None of this applies to me because of the cirrhosis.

Helpful - 0
Avatar universal
Amen to that Jim, i totally agree. Good to see you and hope all is well.

canman
Helpful - 0
Avatar universal
If your doctor's think there's a possiblity of permanent harm from continuing,  then I'd stop now and take your chances even if they are less than with the full course of treatment, especially since you only have stage 1 damage. The whole idea of treatment is to do more good than harm. Hope you start feeling better soon.

-- Jim
Helpful - 0
Avatar universal
The shortest time i have heard of a G2 treating and go on to SVR is 19 days.
The Japanese have done several studies with 4, 6 and 8 weeks duration.
All of them have and SVR rate in the 33-50% range but the main pridictor is really low VL less than 100K.

With G2 RVRs anything over 12 weeks should give you reasonable SVR odds with about 5-10% higher relapse rate than the full 24 weeks course.

According to a recent European study the main predictors of relapse with the short course were low platelettes and high BMI.

All the Best
CS
Helpful - 0
394687 tn?1290920840
Wow you really are !the can do man..That was the article I thought I had dreamed up as my poor twisted fingers and brain searched for endless nights. All I keep finding was the 16 vs 24 one..

Wonder if anyone else on this site has treated shorter times and made it....come out come out where ever you are....


LOvE YoU CaN Do MaN,

I ReAlLy NeeDeD ThAt ! ! !
Helpful - 0
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