Victrellis/Boceprevir Support Group

[hangingin]

I had so many issues with itching and rashy things with SOC, my dr put me on Victrellis, b/c of the rash sx with Incivek.  Is anyone else going the Victrellis route, or am I all alone here?  If you are, when do you start?  I feel like a pioneer here, going to uncharted terrritory.

[Toucan]

I'll be seeing my doc in two weeks to discuss tx course. I already get a nasty rash from a vascular-cryo-immuno disorder that's related to hep C, so I may be going that route as well. Is that one strict about taking every eight hours, too?

[hangingin]

It is. Pills come in 28 individual bottles, they say, one day's dose in each bottle, 4 every 8 hours, have to be refrigerated. Than, you also take SOC, riba and I will be taking Pegasys, which I took before.  The itching was my major side for the entire 6 months, plus some anemia.  With Victrellis, anemia is a factor, so I'm used to that, I just went nuts with the itch.  Let me know when you find out, maybe we can journey together.  Best of luck to you.

[EvelynD]

I will start the victrelis in about a month.  Getting the depression under control first.

[hangingin]

I will Probably start next week. I already have the mess in hand. Good luck to you all

[sueimpe]

Evelyn & hanginin

It looks like we're the only ones here going the Boceprivir route. I was prepared to start Incivek and knew nothing of SOC with Victrelis. After reading up on some of it today, I have an even better reason to have my Dr prove that I have cirrhosis. They're really just guessing anyway. i didn't care before because it wouldn't have made any difference in tx time. But it will now! I'm not comfortable just doing more interferon "in case". I hate that rat poison!

The pharmacy called today and they're working on my scripts and financial assistance paperwork already, so I could very well start tx on time. UGH less than 2 weeks. I can't remember if you start them both on the same day! I don't think it matters, does it?

[hangingin]

Hello!  I am just wondering how many people will be treating with Victrellis(Boceprevir), it seems that most so far on the site are doing Incivek.  I would like to see if we can get the Victrellis people together as a group to share and support each other through the tx, which is considerably different from the Incivek tx, as I understand it.
If you are treating or planning to treat with Victrellis, please consider sharing your experiences here with us, so we can learn from and encorage each other.  Any other ideas anyone has would be great.  Thanks.

[ipaqgps]

Great idea.... I would like to know how it goes with this drug too.  Do you have to eat the fat with it like the Incevik group?

[banarep]

nice.  it will be good to hear from this group of treaters as well.

[hangingin]

ipaq, I won't actually start tx until this Friday July 29, but I have been through orientation and heard nothing about the fat or other food requirements, so I don't think so.  The timing of drug ingestion is critical though, as I understand it, must be on time every time. I guess we really don't know too much yet about the tx specifics for Victrellis, another good reason to have a thread where we can all learn and share as we go.  I think anemia is a major side, don't know much else, I will know soon though I know of a couple others who will be on this tx, but surely there are others.  BR, you always have good info to share on this site, I appreciate you and your knowledge and experience..

[hangingin]

Hmmm...looks like I may be the only Victrellis guinea pig on the site.  Well, I guess I'll be blazing this trail on my own.  To live is to learn.   We're seeing lots of good results on the Incivek people, good luck to all and congrats on all those UND's I've been seeing.

[sueimpe]

Hi Bocepribuds
I'm really confused, angry, annoyed, I really can't explain how I'm feeling. I do know that I'm frustrated. First, my Dr (Flamm) changes me from Incivek to Victrelis. This is after he told me that I was a prime candidate for telaprivir and he wanted me first in line when it was approved in May, and that I should call on June 1st to make an appointment. He's only at the clinic closest to me 2 or 3 times a month, so when I called I couldn't get in till July 15. July 1st his nurse Sarah, who is a phenomenal hep nurse that I want to keep as my tx support, called to go through tx plans with me. That's when she ordered bloodwork and let me know that he was switching me to boceprivir, mainly because of Riba rash I had last time. I don't remember it being that bad! I asked how many weeks (I assumed 36 since I was a partial responder without cirrhosis. SOC, right? l), and she said 48 since I have cirrhosis. Say what??? GI said CT scan showed a "pretty, pink, smooth and very healthy looking" liver. No inflammation of my spleen. No ascites. Stage 1 Fibrosis is what the dx says on the report, as well as my last ultrasound. Current endoscopy shows no varices or anything besides minor stomach irritation probably caused by pain meds (UGH that's another story). The only reason he said cirrhosis was consistently low platelets (115 for 2 years, currently 133), extreme fatigue, and encephalopathy (brain fog caused by above normal ammonia levels). Silly me thought these were symptoms of HCV! I argued the cirrhosis dx because it means w12 more weeks not only of the evil interferon & yummy Riba cookies, but Victrelis as well. So she changed my appointment to August 6, so she could talk to Flamm and be sure I got meds in time. OK, fine, no problem. I also offered to have another bx since it's been 5 years. A few days later she sends me an email that said "Hi-Dr. F says no biopsy...we will treat you as a patient with fibrosis. That does mean the longer duration, but it will ensure durability of response."GREAT! LOVELY! Just a wee bit of lip service to shut me up. So I cave in. He is at the top of his field and he really does have my best interest at heart.

OK. So I'm waiting for tx to start. Stress at home is insane. Hubby loses his job which keeps him home 24/7, frustrated and angry, screaming at me about my rotten kids who left 4 dishes in the sink and didn't clean the litter box. 2 said kids, both in their 20's, not paying rent, venting at me about their woes (what do you mean I have to WORK? Me? I won't have time for my music? I'LL DIE!! It's my passion! I shouldn't have to work! You are supposed to support me TILL I DIE!" At this point between my depression and PTSD not to mention the pre-tx anxiety, I'm ready for the rubber room. Seriously! Just an absolute nervous wreck. But this too, is another story.
Fast forward to this past Wednesday. Sarah calls to let me know that Dr F has cancelled the clinic for Aug 5th. I have to call back Thursday to make an appointment for Aug 26th. By this point I'm gonna cry. 3 more weeks. Treatment delayed 6 weeks so far. Had to do some fast talking so she wouldn't postpone it indefinitely cuz she could hear the stress in my voice. Well, the final ray of sunshine came today when the pharmacy called to schedule meds delivery. Sarah had said she would prescribe Pegintron redipens and rebetol. All 3 made by Merck. Those are what were on the financial aid forms, and I'm obviously having insurance issues with Chris out of work and me on disability. Well, they prescribed Pegasus and Riba-pac. i only know what I've learned here, that feel crappier on Pegasus, and I'm comfortable with the redipen. Plus it doesn't last all week.
I'm so disappointed. i should probably just do what they say and shut up. Trust them to make the right decisions for me. But I can't! I know bad it can get. Hell, my v first tx should never have even been done! I was fine till I did what the Dr said. All I want is to have a chance to maybe lighten up these symptoms a bit. Have some control over my life. S** t if this had gone the way it was supposed to, I would be halfway closer to knowing if I'm gonna fail or have a fighting chance! I've done everything I'm supposed to, even given up any pain meds for my fibromyalgia and crumpled neck. I'm sleeping no more than 3 hours at night and when I do sleep it's for 2 days solid. I've changed my diet. My VL is way down, so are my ALT & AST and platelets are up a bit.
Sorry for going on and on. I'm sure no one has read it this far anyway! But it did help me to write it all down. So thanks again for giving me an outlet and support, as usual!

Impy

[sweet sue]

Sue,

Oh man, I'm sorry to hear all you are going through. Don't blame you a bit for being stressed and hope it helped to put it out there. Life has a way of throwing a lot of crap at us all at the same time.

So do you actually have all three rx's now? If so, why do you have to wait til the 26th to see the dr. Bit confused about that.

hepper hugs

sweet sue

[greginky]

Hi Impy,
   I read it all. Those delays are terrible. I hate waiting, and as you said, you could be halfway to knowing. I am on day 2 myself of Incivek. So far no problems at all. A slight headache and mild diarrhea. Just hang in there, life has a way of working things out

Greg

[Toucan]

Morning hangingin
I'm starting today as well, but with Incevic not Victrellis. I wanted to wish you all the best and mention that you're a hero for blazing this trail on your own! We're all in the same fight, just using different weapons!
Linda