Stopping Incivek at 10 weeks

[robinb60]

I am writing this for a friend who has been on the triple therapy using Incivek for 10 weeks now. She is so weak that she cannot type and so I am writing this for her. She has been having constant bladder  infections for the last 5 weeks. She takes antibotics and it goes away for a day or two but then comes back. She is in constant pain from the infection. Her doctor is useless since she is his first Incivik patient. She is thinking about stopping the incivek a week or two early but keeping on the interferon and ribavirin. She was undectable at 4 weeks and at 8 weeks.  She is terrified her immune system is compromised and so may get something really serious. She is afraid to go outside.

Any suggestions on what she should do? What happens if she stops incivik a week or two early? Thanks

[Dillodog]

Seeing how triple therapy uses interferon the same ILB28 gene C/C C/T and T/T markers have a lot to say about SVR and success rates. UND at 4,8 & 12 weeks are usually indicative also.
I got anemic both on the Incivek and even more so after I stopped at 12 weeks and just on the Ribavirin.  Have had shots of Procript every two weeks with Incevik and every week for a while with just the Ribavirin and Pegasys.
These things need to be checked. Interferon messes with your blood marrow and can slow both red and white blood cell production. Both Incevik and Ribavrin make you anemic when they are doing their job.
Her doctor should be doing her job also and checking everything including blood work each week or two weeks at the most.
Sadly this is what happens when you leave it to a MD for this treatment. Hepatologist or a GI with lots of liver experience should be used.... not someone on their first time treating HEP C If she's not having a bad rash on the Incivek they usually don't take you off of treatment.

[BoceprevirGal]

roflmao xo<3

[BoceprevirGal]

I've had bladder infections before, while not on the treatment, and been in so much pain, that I took myself to the E.R.  If she wants to see a specialist, such as a Urologist, then it might take weeks to get in  to be seen, infortunately.
   Once the immune system is compromised by these meds, the correct antibiotic is crucial. I googled, and there was TONS of new meds for bladder infections, because during the last decade we have developed resistancy to the old antibiotics, which treat bacteria. Also, so me of the meds are contraindicated, with the new meds we are on.
   I think we are all praying for her to get better. But, I am glad for this website, and specifically, her post, as I am now going to be hyper vigilante about wearing loose cotton clothing ( when I wore my tight polyseter pants, I could smell the bacteria down there forming rapidly, yikes) and also washing, after going to the bathroom, as e-coli tends to be the bacteria responsible for infecting a womans' shortened urethra. I never understood why they put that front spot so close to that poopy spot : (  I am going to get myself some Just Cranberry juice, and also the Just pomegranite juice, for preventitive care. I noticed my gluclose level rose, on the triple therapy, and when I cut the sugaroutof my diet, my sugar normalized, so I suppose we should all watch our sugar intake, while on tx, and attempt to find the appropriate antibiotic, at the first sign of infection : )

[stormy456]

LOL!

[willbb]

Hopefully robin's friend infection has cleared up by now. .if not she may need more than some "cranberry juice"

[BoceprevirGal]

I know that there is a specific med that targets bladder infections, and I seem to remember it being something called Nitrofurentin...I misspelled it, but it was yellow pills, and you can google which medis specific for bladder infections...regular antibiotics didn't work on me, when I got one (although I wasn't txing at the time)
   Sometimes, when my regular Doc just ISN'T helping, I wait until the night, and then go into the E.R., for a second opinion, and if your friend is really weak, she should just go there! That's where I got those yellow pills, that worked...and then she can have her blood drawn also.
  I'm on triple tx, and as soon as the third med was added (Boceprivir)..I got an immediate tooth infection. My Doctor prescribed Pennicillin VK, and it didn't help at all, so I just dont chew food on that side, but the smell of decay is hard to take! I have also had burning, with my bladder ( has she tried the Just Cranberry Juice, by Knudsen, diluted with water, it helps also..and have her avoid all food with sugar in it, even bread...mostly just brown rice, veggies and meat proteins) with the adition of the triple therapy, cracks on my finger tips that wont heal, and now, it feels like atheletes foot is setting in. Once the white and red blood cells are low, bacteria and fungi come running in. Although both my kids had a horrible flu virus, which I didn't get.
    I hope she gets a better med, changes diet, and sticks it out another week, if she can. Good luck to her, I know she must be so miserable~

[ca69sm]

Was there really a need to derail this thread?

[suezeeque]

From what I understand, treatment can also cause some other problems that might make one feel like crap.

Has she had her thyroid levels checked?  What about blood sugar?  I believe it is interferon that can cause type 2 diabetes.  When the blood sugar is high, a vicious circle begins.  High blood sugar leading to infections, infections causing the blood sugar to become higher, then the blood sugar further 'feeding' the infection.

She should probably get back to her doctor asap and get her thyroid and blood sugar checked.

[spectda]

Is she taking the full course of the antibiotics or is she stopping when she feels better? She probably understands that it is important to complete the course to get rid of bacterial infection which is usually 10 days to 2 weeks, sometimes longer with a stubborn infection. Still I thought it was worth mentioning as many people stop taking antibiotics when they feel better and the infection comes back because it is not yet our of their system, just being suppressed. Hopefully she can stick out the Incivek course.
Good luck,
Dave

[Ajw78757]

Long thread..honestly didnt read it all.


Trials for Incivek released data showing people who stopped treatment @ 8 weeks (vs. 12)  showed that about 7% less of the people on the study obtained SVR if they stopped at 8 weeks.

I contemplated the very issue of stopping early. After talking to my Dr., and myself- I do not want to risk even 7%.

7% isn't huge, but it is still a real number with a symbol after it :)

If I absolutely had to stop early, I would without regret and pray for the best.

Wish you and your friend the best in whatever your decision is.

[Proactive]

agree on the numbers Willy..and on that note I off to look at the numbers on KMI's offer to buy EP...take care,pro

[Willy50]

I was in that trial, but dropped out due to the results of my biopsy; 1/6 ishak.  Dropped before I dosed and so i am still a naive.  We are talking about a trial with 320 people give or take, split 3 ways; about 100 per arm 12 & 12, 8 & 16 and SOC/control/comparator arm.  Who knows how it would turn out w/ a different group if you were to run it a second time.  My point is you can't take the numbers to the bank, they give only a general idea and the principle has not been retested since to my knowledge.

The principle of sticking to the thoroughly tested 12 weeks principle has been used on over 2500 people who dosed TVR in trials, and so a similar extent in the very comparable Boceprevir trials.  The principle of resistance is well established.  The consequences of taking ones PI dose religiously has been expounded on by both drug producers.

Not much to argue about, especially when one knows virtually nothing about the person being treated.  When in doubt, follow the directions.  : )

best,
Willy

[willbb]

correction:Inci would proly have nothing to do with that.
  meant
it may be Inci  has nothing to do with that

[desrt]

Agreed, knowing the reason(s) why the antibiotics aren't working might make this whle discussion moot and the 'opinion' of someone like Susie who's had to deal with something similar might be more valuable than all the other comments on this thread.
No matter how hard we try to be objective, we tend to view tx through the lense of our own experience and the views of someone like Lynda who was concientious and still relapsed will always be different than those of someone like myself who dose reduced, quit early, and still SVRd.
There is no justice to this disease.

[willbb]

just suggesting to the OP to focus on the constant and painful bladder infection first and move on from there with the doctors guidance

---------------------------------------------------------------------------------------------------------
agreed ..  the OP may just be  only surmising the reason they feel so crappy is the Inci..when in fact an infection can do this in spades...is why I mentioned the antibiotic continuation  .
The OP"s last sentence was she was afraid of her immune system crashing....Inci would proly have nothing to do with that.

It just reiterates ...these meds should only be prescribed by knowlegable doctors (in prper prescibing protocols of these P.I"s)...sadly they  seem to be all over the map on their knowledge(or lack of) and guidance when it comes to these,and the drug companies would be well advised to further get these docs better informed

..

[OdinLovesLife]

Given the content of robinb60's post I think whether or not she can continue to take Incivek, Interferon and at all depends on getting her to a competant specialist.

She has had constant bladder infections for 5 weeks...
She is too weak to type...
Her doctor is useless since it is his first Incivek patient...

We don't know any test results or anything. Getting a second opinion from a competant specialist as soon as possible seems like the priority in this case.

[flcyclist]

My point was that until these constant, painful bladder infections are resolved any modifications such as dropping Inc or dose reductions seems premature.  I've had bladder infections in the past where I've felt like crap and I could barely get off the couch.    

I wasn't challenging your statements regarding SVR rates, just suggesting to the OP to focus on the constant and painful bladder infection first and move on from there with the doctors guidance. :)

[desrt]

Of course the 'official' answer to everything here is "Ask your doctor." Heck, it says right at the bottom of the page "The Content on this Site is presented in a summary fashion, and is intended to be used for educational and entertainment purposes only."
Trouble is, there are a fair amount of doctors who are idiots, even among the ones who call themselves 'Hepatologists'. Ask SusieS2010 how well antibiotics work when your white counts are zero.
The reality is, a lot of people, including myself, take what is posted here very seriously. If I had ESLD or needed a transplant I would give a fair amount of weight to the opinion of someone like mikesimon or HectorSF who have studied this stuff as though their lives depended on it.
As for being ob/comp about doing all your PIs, I'm all for not producing new resistant strains. Trouble is, someone way further up the food chain has already weighed those risks and decided to take them when the PIs were approved. How many doctors tell their patients that they're twice as likely to have to discontnue tx completely with a PI as they are with SOC?

http://www.clinicaloptions.com/Hepatitis/Conference%20Coverage/AASLD%202010/Tracks/HCV%20Treatment/HCV_Treatment/Pages/Page%201.aspx

"toxicity-driven discontinuation occurred in 7% and 8% of patients receiving 12-week and 8-week telaprevir, respectively, and in 4% of patients receiving placebo"

[Proactive]

make that 70%..to many times without a hard hat..

[Proactive]

Statistically insignificant maybe, but for those in the 3 %? Not to mention, your assumption is a linear based extrapolation..suppose it's not linear and after 10 weeks your chances of svr have only increased to 76%?

;*) pro

[lynda607]

All it takes is one relapse to give someone a whole new perspective on what it takes to stick with the program and there is no fight or flight because flight is not an option.   We know there will be those who will never be able to complete therapy for whatever reason no matter if their doctor says push on or how many times they tried treatment in the past.  But for crying out loud, especially with the DAA's don't quit unless the doctor says it's medically necessary.

[Willy50]

look at figure 2;

http://www.natap.org/2010/AASLD/AASLD_36.htm

12 weeks of triple therapy vrs 8 weeks;
75% SVR rate versus 69% SVR rate respectively.  So at 10 weeks of triple therapy you may see a 3% difference.   ( 4 week difference @ 6% difference = about 1.5% increased efficacy per week of triple therapy)
You are getting close to statistically insignificant.  The OP said they might stop 1-2 weeks early, so they may be talking about 10-11 weeks of triple therapy.

BUT...... I agree; it is best to not deviate from the trials, and I think my post said as much.  I totally agree w/ the principle.

I was confused there for a minute....... because I am a construction worker.  : )  OK....maybe more than a minute.

willy

[can-do-man]

Yeah but lynda one would have to assume that all the years of researching these drugs, plus all the training these hepatologist have been through, plus being lead investigators though out these trials might just be right and my back yard mechanic changing my oil might be wrong....

[lynda607]

No one can say with any certainty that stopping the DAA early will not effect the outcome.  I'd hate to have that 4 wk EOT PCR come back HCV RNA DETECTED and wonder for the rest of my life if the outcome would have been different had I completed the required protocol.

There is no do-over with triple therapy like there was with SOC.  It's a one time deal from what we can tell so far or at least several or more years before the patient can treat again with the same DAA so why not get the most out of it especially when person has advanced liver disease or extra hepatic manifestations from the hepc which cause other major health issues.  Geez, what is wrong with some people!