Boceprevir...11 months post

I just realized that it's been almost exactly one year since I stopped taking the meds.

I was declared SVR at the 6 month post mark and recently the unblinding confirmed my take on which trial arm I had been in. For the record:

4 week lead-in peg-intron and ribavirin
24 weeks peg, riba, and boceprevir
20 weeks peg, riba

I finally started the follow-up study and my results were that I'm still UND at 11 months post and all my blood values have rebounded back to normal. My platelets (284) aren't quite as high as I started out, but they're well within normal. My thyroid survived and is looking good.

The only thing is now my cholesterol is up (213) when before it was always low.

I don't have any residual aches and pains. My hair is all back and curly again too. I lost a spot of psoraisis (psoriasis) I'd had since I was 11. At least so far it isn't back (knocks on wood). My face flushes more easily than it used to. Could be rosacea. Haven't followed it up and it does seem to be decreasing somewhat over time.

The most serious problem I've had is getting my stamina back. I've never been one for exercising and that's what it's taking. So, I'm off to the gym these days and doing yoga and it's helping me to get stronger.

No word on when Boceprevir will become available but I highly recommend it. Based on my VL numbers during the lead-in period, I would never have cleared without it.

[RobertBeWell]

Good deal! Glad to hear it all worked out in the end.

So, on the chlorestorol... do they have any idea why that is? Do they expect it to return to normal? Has your diet changed?

I'm curious because I started tx 2 months ago, and at my recent physical, my chlor and trigycerides were up significantly. They have never been an issue for me before.

[nygirl7]

The only thing is now my cholesterol is up (213) when before it was always low.


GB this is so common.........so very common..........

You are doing great though overall fantastic.  I can't believe in Feb I will have been done for four years? Where does the time go?

[Trinity4]

So very happy for you GB.  The PI's are my hope too.

Trin

[GreatBird]

I don't remember where I heard this (i.e. could be anecdotal and not from a study) but it is one of the sx of SVR for some people. And that's because HCV keeps cholesterol artificially low. I'm fairly certain that's what it was for me because my brother and my dad have both had cholesterol issues and there I was eating burgers and butter with low numbers. My diet didn't change pre/during/post tx, except that during tx I ate less. I'm going to have to pay attention to my fats now :sigh: because I don't want to go on cholesterol meds.

ny and Trin--thank you! Trin the PIs *will* work for you. I know it.

[carol411]

Thank you for posting.  I just finished SOC and am really looking forward to post-post tx.  There's a lot of hope and common sense in your story.  Thank you for sharing.

Carol

[positude]

First let me offer you congratulations! Wonderful news about your post tx status. Secondly, thank you for posting. It is so nice to hear that you are doing so well. Keep up with the exercise and yoga and you will continue to feel better and better! As far as I know you are correct about HCV keeping cholesterol numbers down, and it is pretty common for people to have an increase post tx as NY said, so I would just keep an eye on it. Continued happiness to you! And again, congratulations!

~Pos.

[child24angel]

A huge congratulations !!!!!
I hope things subside each day !

Hugs
Elaine

[babs824]

my cholesterol was high before tx. i have been enjoying full fat yogurt and smoothies made with milk in addition to cheddar cheese with riba to keep the fat thing going as recommended. guess im doomed to lipitor post tx, huh?

[Magnum]

Great! So happy for you. A new lease on life...

Magnum

[Bill1028]

That's great news!

[babs824]

meant to say what good news for you. it is inspiring to hear these good stories.

[James10500]

Congratulations, another success story. So encouraging.  It's a tough crowd this Hep C crowd.  I'm proud to be a part of it.

[GreatBird]

Thanks everyone! I'm so encouraged by my experience with the PIs and the great stories here. I also await their approval impatiently. There are far too many people who have fought the valiant fight only to lose because interferon and ribavirin were not enough on their own. Someday tx will be without them and could be as simple as a course of antivirals like we take antibiotics now. Just think of it. :)

[copyman]

Congrats !!!

another one gets aboard the SVR train that is rolling along toward a new life.........

Best of luck

[eureka254]

Thanks for coming back to the forum as an SVR member and giving others hope.  I tip my hat off to you and all those blue-pill and other trial warriors leading the charge to a better way.  I'm so very glad that your treatment resulted in success, thereby leading the way for others to experience it too.  And way to go, taking the proactive stance to regaining more of your younger self... I'm sorry that your recovery has not been 100% yet, but it sounds like you're taking the right steps to get there!  The GreatBird soars once again!

[willing]

it's very nice to hear you're doing so well! Congratulations and thanks for stopping by. Success stories are always a big encouragement  and yours includes a couple of details that future boce-warriors will take to heart: a luke-warm ifn response in lead-in by no means precludes success and boce-anemia, even if challenging, need not require epo.
Be well - namas-de

[Cory255]

I'm sure it's a great feeling to know you're SVR.  Must be a very exciting time!

Cory

[jazzy578]

I'm glad I checked medhelp and saw your post.  You talked me through some rough periods of my tx and gave me some good advice.  I am so thrilled that you have finally cleared forever!  This Thanksgiving Season will have much more meaning for you this year I am certain. I believe as you slowly build up some muscle mass, your energy will build, too.  

When I am done in February I know I will not be my normal self for awhile, and since I will have lost over a year of my life just sitting around I might never be my normal self again.  And that is okay, just as long as I can be the best I can be when I am done. I may be a little slower, my mind may not work as fast, but I can be healthy and productive and a blessing to those around me and that helps to  give life meaning.  

I hope you will soar through the clouds as your name claims, and life will hold beauty and opportunity for you.

Jazzy

[Andiamo1]

Congratulations on the SVR.  That is great news.

My cholesterol rose when I stopped and as you said, my doctor thought it had been suppressed by HCV and was now rising to what would be the normal level for me.

I have no choice but to treat it with diet and exercise, since I have significant fibrosis and can't take a statin.

[curehepc]

I m freaking out. I stven rite now I started the teleprivir and another exp pill for hepc. I have geno 1A. Problem is, they told me today (my 6th wk mark) that the virus WAS undetectable at week 2 and at week 4 it came back. They don't say numbers yet. Now they need me to stop the pills, as I am no longer a candidate for further treatment on this oral meds only plan. My body they say built up immunity and it won't work for me. I was just starting to feel pretty good after dealing with extreme exhaustion and anemia. Struggle to work thru the day. I have to start the S O C plan rite away and m scared to death! I am 46, white female. Wow and I thought those 10 pills a day were yuk, NOW the shot plus ribavarin. What kind of symptoms will I get? Do y'all that have taken it, actually go to work and work 8 hours? Anyone have the fybromyalgia with it also? They want me to go to a rheumatolist too. Already did the "psych" Dr. Will I be down the whole 48 weeks? Anyone know the response rate? I am very concerned-nobody wants to b sick. Thank you!

[curehepc]

also guess i gotta give up my marlboro lites when i do  S O C? They help me relax..........

[Trinity4]

Obviously you know you're on a hepc c forum so you have to know there are tons and tons of people here who have done antiviral therapy which consists of interferon and ribavirin.  I did 72 weeks and I'm still here to talk about it and so is everyone else.

I'm not going to tell you it'll be a cake walk because it's not.  You most likely will have side effects such as fatigue, weight loss, hemolytic anemia, rash, mouth sores, alopecia, muscle aches, mood swings just to name a few.  The degree to which we are effected differs with everyone.  For some the side effects are debilitating while others manage quite well and most people continue working.  They may have to adjust their work schedule and tweek their routines but the majority do work.  Of course no one wants to be sick but when a person commits to treating hepc they have to step outside their comfort zone and for lack of a better phrase "just roll with it".  

The response rate for geno1 treating with interferon and ribavirin is around 45-50 percent depending on who's telling the story. :)   They aren't great odds but it's an opportunity to try and eradicate the virus.  I don't know what kind of trial you were in but not having responded to what I'm assuming is a protease inhibitor it is true that your body has now developed an immunity to it so future use would prove ineffective.  Unfortunately, that's the risk we take in current trials with the protease inhibitors.

So, the botttom line is you can do this; many have before you and many will after you.  Don't let fear stand in your way.  That's another road block you don't want to put up for yourself.  Of course we're all scared of the unknown but you have to deal with whatever comes your way the best you can.

BTW, I didn't give up my Marlboro's when I treated, should have but didn't.

Good luck with your treatment,
Trinity