Hep C Discussion Forum

Hi Paul,

I'd like to tell you that yes, the aggravating, years long symptoms caused by the HCV will disappear during treatment but that's not something I can offer. You may notice some improvements in some things, but it may take quite some time for all of them to disappear, if they do. I've noticed some improvements in muscle aches and pains, no further abdominal tightness or RUQ pain, but my large joints haven't improved much, perhaps some with my smaller joints, hands, and feet. Unfortunately I'm having some worsening of hip joint pain and that's clearly a result of the Interferon. I'm having to follow up now with an IM specialist and orthopedic doctor to address the increased discomfort in my hips and knees. Interferon is well known for this and I'm going to work through it, and hoping that time will reduce those problems. But I've noticed huge improvements in motivation, overall feeling of wellness and my outlook for the future is much improved. 

Tig

Paul B wrote:

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... The issue that bothers me the most is that I am a cyclist, and usually ride around 300 + kms per week at hard pace.  Kissing that goodbye for a year will take me back to square one.  At 57, I don't know if I will be motivated to start all over.  

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 Hi Paul and welcome to the forum. Long time distance runner, here. I've had this same discussion with myself more than once. '94 injury (missed two years), '98 re-injury (missed a year), '04 injury/surgery (missed two years), and occasional extended downtime since. When I'd get healthy enough to get going again I used to tell myself, "Ok. A complete re-start. I'm gonna do this, but it's the last time I'll put myself through it." Yeah, right! I no longer even doubt that I'll be climbing back on the proverbial horse. It's in my blood.

If you're cycling 300 km/wk, I suspect it's in your blood too. It will be a primary motivator in helping you through treatment. Hang onto it. You'll be back. No doubt.

wayne

Hi Paul,

Welcome from another Aussie. I'm in Brisbane. I did the 48 weeks of the Victrelis (Boceprevir) triple starting in March 2012.  I'm lucky to have obtained SVR.

Pre-treatment, I had a Fibroscan score of 30.1. One year post-treatment, it had dropped to 8.8 kPa, so fibrosis does regress.

The Victrelis triple knocked me around, mostly from the anaemia. It took a year to recover from all the Interferon effects.

As a cirrhotic, you really can't afford to wait for Sovaldi. There are no more Trials that I know of. The Victrelis triple is doable, and the results are good, particularly if you get an RVR. That's Undetected after 4 weeks of Victrelis (8 weeks total). Sorry about the cycling- although everyone is different, you'll probably have significant anaemia. I did a lot of posts during treatment, so you can have a look and see what you're in for. Cheers mate.

Paul,

With a fibroscan score of 17, I would agree that cirrhosis is indicated. However, the basic ultrasound doesn't provide an accurate representation of cirrhosis, it will show masses and size but not any degree of accuracy where fibrosis is concerned. Even though the fibroscan utilizes ultrasound technology, it uses a different probe and measures an ultrasound pulse, vs a scan that is used for a diagnostic ultrasound. 

Tig

Hi Paul,

If you notice at the bottom of my post, many of us post a brief history of our past and present treatment information. You can add that by utilizing the signature function in your profile section. I just took a viral load test 21 weeks after treatment ended and got the official notice that I've achieved SVR and that's considered a cure now. The chance of relapse after EOT +12 (weeks) is less than 1% and that was confirmed at week 21. Generally they will test you at EOT +12 and 24. Provided you remain undetectable on both tests, they give you the all clear and add those three sweet letters to your name SVR, or Sustained Virologic Response.

I don't know what to tell you about your cycling. It's not going to be easy for you to continue, especially considering you'll be doing a 48 week course. That's a difficult course of treatment, even under the best of circumstances. I'm curious, can you tell me a little bit more about your liver health? When did you have your last biopsy or fibroscan? Generally 48 week treatments are indicated for cirrhotics. Do you have cirrhosis? Any information, ALT/AST, etc. are quite helpful when replying to your questions. Anyway, back to your cycling, you're going to experience some anemia and your strength isn't going to be what you're used to. Your hemoglobin will fall and the oxygen carrying capabilities will diminish greatly and you're going to be extremely tired as a result. It's good to maintain  some form of physical exercise to avoid extreme muscle wasting, but I would be cautious when demanding the kind of strength power cycling demands. We've got a new member here that is an extreme cyclist in Hawaii, her name here is "Turnsit" and she'll be able to provide some tips and advice. But she's not on the same protocol. 

Are there any opportunities to get started on a study with any of the new medications in your area? Mallani may be able to provide you with some advice in that respect. I know that it will be quite some time before Sovaldi is available in Australia, and if your fibrosis is advanced, it's best to get a treatment program started to prevent any further progression. 

Tig

Hi Paul,

Welcome to the forum! I'm glad you've found us. I just completed 28 weeks of treatment, taking the identical medications you will be starting. I also was on similar treatments back in 96, similar again to what you went through with the same results. The drugs you will be starting can be tough on you mentally and physically, but the sfx are tolerable and there are ways to combat those issues. We'll be happy to provide pointers as you go forward. We have a member, Mallani, that is also from Australia and was successful with Victrelis too. He went through a 48 week regimen before achieving SVR. He'll chime in as soon as he see's your post. 

The new Peg Interferon is a once weekly injection, using an auto injector pen. It's far easier to administer than the old 3X per week method! After you start a 4 week lead in with Peg and Riba, you'll start the Victrelis. The biggest issue with the treatment you'll be on is the anemia. But it will be monitored by frequent blood testing and any anemia can be addressed if and when it happens. You'll notice improvements in your ALT/AST as you move forward with treatment and often you'll witness fairly quick action in that regard. But as with anything, those levels will rise and fall during treatment, and won't be until after treatment ends that you'll begin to see things maintain a predictable (desired) level. It doesn't happen overnight and you'll see most of us post our blood test results as we get them. That helps us provide the best opinions should you have any questions regarding side effects or actual test results. Good luck and please ask any questions that might come to mind and I'd like to point out our search function at the top center of the page. It's full of good information. Talk to you soon!

Tig