Hep C Discussion Forum

dustbear · Senior Member

RE: I'm new again

sandypsych · Veteran Member

Thank you so much for that information! I'm certainly taking that to U of M when we go next week. The doc had talked to us about the new medications that are coming out. He felt that Joel's labs were starting to take 'a bad turn' and he didn't think it was a good idea to wait a year to start treatment. He said that since Joel had cleared the virus at week 8, he had a good shot at this being successful. 48 weeks seems like forever, but I guess it beats the other option. However, i would like to talk to him about this mutation issue. No sense in having this treatment if it won't work!

As usual, you are some light in the darkness!

mallani · Guru

Hi Sandy,

I think you should be aware that drug resistant mutations at the NS3/4A site may be a problem. As hubby wasn't Undet. at 4 weeks on the Incivek triple, he probably would have had to do 48 weeks of treatment. He probably still has resistant mutations to Incivek, and some of these also have cross-resistance to Victrelis. There is a test called HCV GenoSure (Labcorp) which measures resistant mutations to both Incivek and Victrelis before you start treatment. I would want to make sure this test was done. I've provided a link.

As you probably know, Sofosbuvir will almost certainly get FDA approval in 6-9 months. I would ask my doctor why it is not possible to wait for that, rather than take a risk with another antiprotease. I had cirrhosis for at least 5 years before I started my treatment. If you start Victrelis, you will almost certainly need the 48 week course. Just my opinion. Cheers.

http://www.monogrambio.com/hepatitis-tests/hcv-ns3-4a/

Tig · Admin

Hey Tonib, I failed to mention the same problem you're having with your hearing. I've mentioned it elsewhere as the sound of rushing or running water. I mean its LOUD! I'm having trouble hearing over that sound. It seems to be constant, along with some ringing (tinnitus) that I've had since my time in the service. It gets much louder for 4 to 5 hours after taking the Victrelis. As Bob mentioned, these side effects are from all the drugs. Some individual and some combined. After we get going with all the meds together its going to be difficult to single out an individual cause. I gave up trying to figure it out. It's enough to know that we're going to be experiencing something from now on. The help comes from all of our experiences and how each of us handled them. Today I'm having some awful rawness in my mouth and behind my lips. Everything I eat causes my mouth to burn and then sting. I'm using saline mouthwash, magic mouthwash, fluoride mouthwash and oh, mouthwash, to try and get some relief! LOL! I don't want to eat at times because of it. That's something we can't afford to do! I'm losing too much weight already. I don't mind it but its too much too fast and my doc doesn't like it much. Too much muscle loss I guess, but exercise isn't big on my list of things to do! What did I say? Just wait a bit and another side effect will rear its ugly head... Hang in there my friends yawn

sandypsych · Veteran Member

Wow, what a warm welcome back! Its so good to see some familiar faces.

We are now working with the Liver Disease clinic at the University of Michigan Hospital. We had been seeing them for many, many years and only switched to a local dr. in West Michigan when Joel was beginning the Incivik, as they thought it would be easier on us with lab work and follow up. Unfortunately it was so new, that the office/staff we went to was clueless about side effects and was so excited that he cleared the virus, they wanted him to continue no matter what. Once he couldn't breath, we figured 'maybe we should see someone else". But, we survived and feel very confident in the team we have now.

Joel is genotype 1a. I don't know anything about the mutation issue, but they did blood work and felt that this was a good option. We are going to meet with them before starting, and they just finished other blood work. Joel hasn't had a biopsy since the last run with Incivik, but has been diagnosed with cirrhosis, and the doctor wants to do this before more damage occurs. Luckily he was able to retire early with pretty good benefits, so staying home and being tired should be easier for him than for some of you. His diabetes has been easier to control, and hopefully snacks this round won't involve so much fat (ice cream).

The work book is fabulous! Thank you to whoever put that information together and put it here is such a saint!

Those of you going through it, keep at it. One day at a time. Ask for help and advice from those around you (here is a great place to start), remember that it will get better. I'm not going through it (so its easy for me to say) but as a partner of someone who is, I admire all your strength and positivity.

Biggyb · Guru

I too was on 48 weeks Vict. Had all the side effects also, but was bearable. Mainly the anemia and shortness of breath. I guess alot of side effects were from the Riba or Peg. (hate the Peg.) but then we all do. Also he will get a metal taste in his mouth, but you get kind of used to. I just ate a banana with every dose of Vict. The search at top will take you to a lot of Victrelis (Boceprevir) info. Just put that in the search box. Good Luck

~Bob

tonib · Senior Member

Jill I just read the workbook, wow that has all the info, THANK YOU!! Its a good thing because I thought I was to take the vic every 7 hours, but now I know its 8 hours.

I wonder if it would have made any difference? But you know I would never chance that especially now that I know. Thanks so much!

tonib · Senior Member

Hey Tig thanks for the info, well I guess i'm almost there with the symptoms already, I got the oral thrush with pain, itchy scalp for about a year prior to treatment, and now I have the nausea, and yeah so tired......I feel like I'm floating I'm so tired, and I have this weird sensation in my left ear feel like water or clogging, and my voice is scratchy. And feeling sad.....so sad....poor me....have many pity parties...but this forum and people like you help me so much, thanks again.

Are you gonna do the 48 weeks? Or the 24? Or you don't know yet?

mallani · Guru

Hi Sandy,

I've read your previous posts , so firstly , welcome back. I couldn't find hubby's Genotype, but presume it is 1a. I hope the diabetes is well controlled now. I'm surprised he's starting Victrelis, which, as you know, is a protease inhibitor (same as Incivek). Has he been tested for RAV's (Resistant Mutations) to Incivek? These are pretty much the same as the RAV's to Victrelis, and unless RAV's are undetected, treatment is unlikely to work. What is his VL now? I'd be very interested to hear what his new doctor has to say about Resistant Mutations, which may still be present. Best of luck. I did 48 weeks of Victrelis, and had just about every side effect. Cheers.

Tig · Admin

Hi Sandy, I started therapy on May23 and Victrelis one month later. It has been rough at times but has been tolerable. The things I'm experiencing the most are anemia, nausea, dental pain, extreme fatigue, oral rawness, scalp itching and moodiness. I'm sure there are others, just wait a day or two and something chimes in! Still it's doable and I believe is far easier on your body than the Incivek is, just my opinion of course. The Victrelis requires you take it with a snack of some kind each time, unlike the fat requirement of the Incivek. So that's a bit easier. I'm here if you have any questions. Best to you both!

tonib · Senior Member

Hi Sandy, I'm almost new...and I start the victrellis in 5 days, I have been on the interferon and the ribo for a month. I don't know too much about the vic, I have heard things....but don't know 1st hand. Good luck and I'm hoping to have some not so terrible news for you next week.

sandypsych · Veteran Member

Hi All

I am new again here. I was here over a year ago as my husband was on Incivik. He cleared the virus at week 12, but developed DRESS syndrome and had to stop. We were so disappointed, but we didn't want him to die from the cure! In the past month his new doctor (its a long story) recommended that he start Victrelis. He feels that his liver disease is progressing, and that we need to start now instead of waiting for the newer drugs to be approved. So, we are scared but starting the new medication in the next few weeks.

This board was such a blessing last time we went through this. There are so many knowledgeable, supportive and encouraging people here. I'm trying to find any information I can on this medication so if anyone has experience I would appreciate any wisdom you can share.

Sandy

Cinnamon Girl · Guru

Hi again, Sandy, welcome back! I remember the difficulties your husband went through last year, and it`s good to hear he`s planning to have another go at treatment now, and with a new doctor this time. If he goes ahead with the triple with victrelis it should suit him much better as it doesn`t have the same harsh side effects as incivek often does, as you know. So, has hubby had a liver biopsy since his treatment was stopped, is that what his doctor is basing his opinion on that the disease is progressing? It would be interesting to know how his liver is now.

There are some very helpful people here with experience of victrelis and they will be happy to help out with any questions you have. Also, here is a link to a couple of useful triple therapy workbooks, you can download the one for boceprevir (victrelis)...

http://www.hepatitis.va.gov/products/patient/treatment-workbooks.asp

Wishing you both all the best, stay in touch and keep us updated! ~ Jill

Hep C Discussion Forum

~Bob~

Legal Disclaimer: