Stopping 2 weeks

[LadyHep2]

I was just wondering if stopping a couple weeks early would make a difference in recovery?  As anyone done it and still come out SVR?  No yelling at me it's just a honest question and I was wondering what the success rate is?  

[swhep]

I started a new thread 'Stopping early', I have copy pasted my posts and responses there.

[BoceprevirGal]

Hi swhep:   You can copy and paste your post above, and start a new Post, if you would like more direct answers from The Forum~
    In order for me to give you the best advice, I would like to ask a few questions;  which PI are you on, the Incivek of Victrelis?  Also, what is your Hemoglobin #?  The HGB being lower than normal, usually is responsible for the fatigue symptoms.   With men, who usually start with a higher hgb, even if you ae not technically anemic (lower than 10 points) a lower hgb causes this.
    If it is low hgb making you tired, than what you eat doesn't make a huge difference, but food high in vitamin B's, and taking vitamin D3 may help the meds do their job.
   My personal story is similar to yours. I used to ride my bike daily, but stopped during my TX, due to, like you said, those muscle aches....I just couldn't relax with achey limbs.
   At 20 weeks, I began to ride my bike agaqin (gentley) and found it did give me more energy, for the last 8 weeks of my Tx.

[swhep]

Thanks for you comments. As I said before, I have only 4 weeks treatment to complete and go back to work. I think some of the following were the reasons for my fatigue.

1. Before the treatment I used be in better shape running 3 miles a week, which I stopped (because of body aches) doing after starting the treatment.

2. Over indulging in eating regular food after a fat diet during incivek, this helped me have healthy rgb but it is increasing fatigue.

3. Psychological factors the the body is not getting used to interferon after sometime as mentioned in interferon side effects list. For me the side effects are going up.

4. Forgetting the actual cost of medicine and how much it me to come to 20th week.

This is what I am thinking of doing for the next 4 weeks.

1. Walking atleast a mile/day as I am not working now.

2. Maintain a strict healthy diet to reduce weight, eating more to gain energy is not working.

3. I think the side effects are more as I work more, as someone said, each one of us respond different. I just have to understand that as there are no common symptoms for everyone.

4. I would not probably stop my treatment 2 weeks early if I had really paid for the cost of the medicine.

I have understood that it is lot better to go through full course to avoid being sorry later. I will reevaluate my situation next week depending on my condition.

Doctor always says he has not seen anyone who had perfect lab numbers during the treatment. Irony is that I am feeling completely drained, still not sure what is the reason for fatigue.

Thanks for all your insight, I will rethink.

[rog1958]

Baby steps Rose, remember?  You can do this.

[Dannyboi7]

We are on the same page on that.We were both saying the same thing in different words.

[pooh55811]

"The basic take-home message is that people on HCV therapy should strive to take as close to 100% of the medications, 100% of the time or as close to 100% as possible. "
______________________________

As Can-do said, the "80% of the dose 80% of the time" guideline was the guideline when doing Interferon and Ribavirin (SOC), and that was only if absolutely necessary.

The Protease Inhibitors must be taken every 8 hours (every 7-9 hours) around the clock. A person cannot skip doses or take a PI only 80% of the time. The Protease Inhibitors have a very short half life and if one misses a dose the blood level drops, thus opening the door for resistance issues.

Ribavirin, on the other hand, has a long half life so that if you miss a dose, the blood level will not drop to a dangerously low level.  Interferon also has a long half life.


INCIVEK:

In all patients* treated with INCIVEK combination treatment:
Start triple therapy on Day 1 and complete the INCIVEK dosing portion of the regimen in12 weeks. An additional 12 or 36 weeks of pegIFN-RBV alone is required.

*To prevent treatment failure, INCIVEK dose must not be reduced or interrupted

*INCIVEK 750 mg (two 375-mg tablets) is taken orally 3 times a day (7–9 hours apart) with food (not low fat)
*INCIVEK is dosed for 12 weeks in combination with pegIFN-RBV and an additional 12 or 36 weeks of pegIFN-RBV alone is required
*INCIVEK must not be used as monotherapy
*For dose modification of peginterferon alfa and ribavirin, refer to their respective Prescribing Information
*If pegIFN or RBV is discontinued for any reason, INCIVEK must also be discontinued
*If a dose of INCIVEK is missed within 4 hours of the time it is usually taken, patients should be instructed to take the prescribed dose of INCIVEK with food as soon as possible
*If more than 4 hours have passed since INCIVEK is usually taken, the missed dose should NOT be taken and the patient should resume the usual dosing schedule

http://www.incivek.com/hcp/dosing-and-administration

[jules2551]

There is always the 80/80/80 rule,it always helps the chances of SVR.
***********
One would think that the 100/100/100 rule would be the "best" chance for SVR

Jules

[his3707]

I wanted to quit so badly, then my Aunt said it would be similar to a convict who had two weeks left of prison breaking out.
It would not make much sense.  
___________________________
Well said!

[willbb]

  
     cando is  correct!

  Will

[can-do-man]

Hi,
"it is important for patients to understand that to achieve the benefits of therapy, they need to adhere to dosing and there will be aggressive management of adverse events. It will be important for patients to communicate whether they are experiencing any adverse events."

http://www.clinicaloptions.com/Hepatitis/Annual%20Updates/2011%20Annual%20Update/Modules/DAA%20Naive/Pages/Page%208.aspx




Dose Modification

Dose reduction of Victrelis is not recommended.

If a patient has a serious adverse reaction potentially related to peginterferon alfa and/or ribavirin, the peginterferon alfa and/or ribavirin dose should be reduced or discontinued. Refer to the peginterferon alfa and ribavirin Package Inserts for additional information about how to reduce and/or discontinue the peginterferon alfa and/or ribavirin dose. Victrelis must not be administered in the absence of peginterferon alfa and ribavirin.

http://www.drugs.com/pro/victrelis.html


Anything I have ever read states one cannot dose reduce either one of the PI's, hope things are going well for you.

[Dannyboi7]

A publication of the
Hepatitis C Support Project
execuTive DirecTor,
eDiTor-in-chieF,
hcsp publicATions
Alan Franciscus
Adherence to HCV therapy is one of the most important predictors of
successful HCV treatment.  While there are well-defined and established
guidelines for some disease states such as HIV, hypertension and others,
it is less clear when it comes to adherence for HCV therapy.  The basic
take-home message is that people on HCV therapy should strive to take as
close to 100% of the medications, 100% of the time or as close to 100%
as possible.  

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Adherence.pdf

I suppose this can also apply  to someone on the triple therapy,for those whom it is possible to do it.What it comes to is that it is important to adhere as much to your dosage prescribed as possible until eot to have a better chance for an SVR.

[can-do-man]

That 80/80 rule is old news and does not apply to the PI's as one can never reduce those. That is quite clear.

[flcyclist]

.I really didn't want to post that question but everyone's input helped going to take my own advice and push forward congrats to all who finished hardest thing I have ever done! ;)
---------------------------------------------------------------------------------------------
Good choice to push forward.  I would guess nearly everyone has gone through the thoughts of stopping early or wishing that they could stop several weeks prior to eot.  I know I did.  But I also knew I only wanted to do this once if possible and didn't want to be haunted by the what if's.  Good luck moving forward.  

[Dannyboi7]

There is always the 80/80/80 rule,it always helps the chances of SVR.

[BoceprevirGal]

  If I were you, I would take the 2 weeks off from work, if that will help you complete your Tx.
   I have always put my health first, over material objects, etc.
Like I mentioned before, the last 2 weeks of my 28 week Tx with Victrelis, were alot harder than I thought they would be, but mainly, for psychological reasons, rather than sx.
  It's like, once I could see that light, at the end of the tunnel, it became very hard to get those pills down.
   Others on here have mentioned that you may have not been Und at
8 weeks.  I cant remember what Stage your biopsy was, but if you donthave liver damage, then maybe that is why your Tx Doc thinks 28 weeks are enough.
    I have one other guy in my IRL Support Group, who was Und at 8 weeks, and was also found to be UNd at 3 months post Tx. Now he is waiting for his 6 mont result.
   I was Und at 4 weeks, before the Victrelis was introduced, which is called a Super Response.  It means that my body reacted well to the Interferon, that the Interferon used, boosted my own immune system, into wiping out my Hep C vurus. Early response to Interferon is a good indicator of future SVR.
   So, if you didn't have that super responce, to your Interferon, then it sounds like th Victrelis is what turned the scales in your favor, and wiped out your virus. So every dose of Victrelis is incredibly important to you achieving SVR.
   Make sure you ask your Doctor about your labs, and if you were still detected, at 8 weeks, why they are not Treating you for 48 weeks~
   I am thinking that they gave you that test a week late, and that youe were Undie at 9 weeks??

[sadmommyjoy]

I know this has been extremely hard on you, but PLEASE try and finish your 2 weeks. You can do it. Do you have someone you could talk to during this time every day? If not, you can message me or anyone on this forum and we will try and get you through it.

I have been there with my 20-year-daughter every step of the way, and I know how difficult everything is through her.

God bless you.

[sadmommyjoy]

Thank you for sharing your information about taking 1 month at a time. I tried to get my daughter to take one day at a time, but as you know sometimes that is very hard to accomplish.

My daughter will hopefully be finishing her treatment at week 24 in 1 1/2 weeks, Gen 1(a). The information you provided will be helpful to other just starting out or who need inspiration. Thank you so much for sharing!

[Dee1956]

I understand how you feel.  I was where you are, I wanted to quit so badly, then my Aunt said it would be similar to a convict who had two weeks left of prison breaking out.
It would not make much sense.  I do know how you feel and I am so sorry you are going through it.

I think everyone above gave you good advice especially OH saying perhaps the doc would let you reduce the riba a bit to give you a break.  It does help.

Good luck

[working dog]

i have noticed it seems to me the worse the aniemia the better the chance for svr as well as the better the chance of stopping tx early and curing...in 07 08 i use to read loads of posts here ..i felt so bad for the folks with bad symptoms...but then sure enough many would svr...some folks had a tough time even with soc and only 24 weeks tx....then i noticed the folks exercising with light symptoms relapsing....seems to me the worse the prolonged anemia the better the chances of svr...so when i see folks who's hgb tank in the first month of tx and they reduce ribas down to the point where they can walk around ...work...do stuff i get worried for them...i guess my point is (for folks without cirrhosis) that need to stop triple tx early because of really bad symptoms..that have had anemia from early on in tx may have a pretty good chance of svr..but for those with light anemia who can get around and do stuff...be careful....thats my opinion on this ....good luck to all out there....billy

[Idyllic]

Did you used to be LadyFoxx? If so I think Pooh may be on to something. I tried combing through your old posts and piecing things together just to see if I arrived at the same conclusion.

_______________________
On May 20 it looks like you were ate the 10 week point:
http://www.medhelp.org/posts/Hepatitis-C/10-weeks-so-so-tired/show/1738815#post_7970787

________________________
And then on May 21
It says, "Here are my results from last week." So that could be week 9 or 10:
http://www.medhelp.org/posts/Hepatitis-C/Risky-Stopping-Treatment-/show/1739465#post_7974332

"HCV RNA by PCR Detectable for HCV RNA by PCR, less than 43 IU/mL, not quantifiable. IU/mL
Reference Range: Negative for HCV RNA
The Linear Range of this assay is 43 IU/mL to 69,000,000 IU/mL. "
_____________________________

Here is the Boceprevir Response Guided Therapy Chart:
It would be the first column, Naive to treatment with no cirrhosis
http://www.medhelp.org/user_photos/show/284656?personal_page_id=1282072

_______________
If these dates are even semi-accurate then it is possible you would be stopping almost at the half-way point. Again the chronology could be a little off  & maybe you will discover they are when you reconcile the dates of your labs :)  :)  :)

.•*´★¸¸.•*¨*•*♦¸.•*´✡¸¸.•*¨*•☀¸.•*´★¸¸.•*¨*•*♦¸..•*´★¸¸.•*¨*•*♦¸.•*´✡¸¸.
Hey, I have copies of every one of my labs and reports (in chronological order) in one of these:
http://ak.buy.com/PI/0/500/223626691.jpg

and I grossly miscalculated my treatment duration (even though I had a chart with 48 weeks and all my labs dates). I planned for 24 weeks and would ramble on about how in the middle of July I was going to do certain things.

Then some very kind person on here very diplomatically pointed out that since I am a prior partial responder I would treat 48 weeks. It was such a sweet message. And a shock. I can imagine the mental gymnastics it must have taken to explain everything and point out my last shot would be 14 Dec (which was spot on & means the person really made sure she had the facts right).

Needless to say at the time it was a huge set back. Luckily I has a semi-decent Plan B but it was a real shocker.

The point is whatever you decide is up to you.  It is a tough decision to make in a vacuum. I know I would want to hear every possible perspective if I were considering stopping in the middle of treatment (or shorter than the treatment duration).


Best of luck to you♫

[1swimmer]

I think pre-tx, it is important for people to get informed. If health providers start patients on tx, without all the info, it is a set up for possible failure.

What I had learned, was adherence to scheduling of meds was critical and upped the success rate. Also, I knew certain lab dates were very important.

And you guys teach me something new every day.
C

[can-do-man]

"Strange, how only two years ago people would treat for 48 weeks and more, sometimes multiple times, and would complete the full treatment."

Yep things have changed, and really there was not much talk about ending early. When at 12 weeks I wasn't und then it was pretty much a given it would be 72 weeks and the odds was not very good. But we wanted to be rid of it.

[HectorSF]

I thought Will said it best...
"You can do only 22 weeks of the 24 four week dose..Just as long as ..if you happen to relapse you won;t beat yourself up at all about not doing the prescribed dose.

To treat for for almost 6 months or 12 months and then to relapse might be a heavier burden then completing the proper treatment duration. If you are genotype 1 and fail treatment then you may have to wait years for the newer treatments to come to market before you can treat again. Since there are no statistics for SVR rates in those who don't complete the full treatment, and we all respond to treatment differently to treatment, everyone should be aware of the risks vs benefits of such a decision.

...Strange, how only two years ago people would treat for 48 weeks and more, sometimes multiple times, and would complete the full treatment.

Cheers!
Hector