Hep C Discussion Forum

Groupergetter · Guru

RE: Started Boceprivir yesterday

Paul B · Senior Member

Und @ EOT as expected. While the odds are great I am still a little nervous. Here's hoping though !!!

Scruffy · Guru

FINISH LINE!!!! Congratz Paul. Time to start feeling better. Good job.

Tig · Admin

Congratulations Paul!!! Let the recovery and healing begin. You're going to notice improvements all the time, starting with no more injections and 18 less pills per day. I think that was the strangest thing to get used to. It wasn't difficult by any means, but strange not having to answer all those alarms, the dietary demands, etc, etc, etc..... Well done!

WOOT!!

Cinnamon Girl · Guru

Very well done for sticking it out for the full 48 weeks, Paul, that really is a huge achievement!

Couldn`t be more pleased for you, onwards to SVR now, my goodness you deserve it!!

mallani · Guru

Good one mate. Give yourself a pat on the back and prepare for the Tasmanian winter!

Look forward to the SVR.

Paul B · Senior Member

48 weeks done !!!

Gator Man · Senior Member

Great news, Paul! You've persevered and done it the hard way. Not only are you rid of Hepatitis C, it looks like your liver is recovering as well with an ALT of 37! You have a bright Hep C/needle free future in store!

Congratulations are in order! Let us celebrate that last shot, so post when you are done.

john

Scruffy · Guru

Last box...NICE!!!! Job well done my friend.

mallani · Guru

Hi Paul,

Almost there mate.

With an ALT of 37, you've got this in the bag.

Take it easy and cruise to the finish line. Cheers.

Tig · Admin

Hey Paul,

Thanks for the update! Sounds like you're doing quite well. The tests sound very promising as Jill mentioned. You must be getting excited to see the finish line so close. I'm happy that this is about over for you. You've done remarkably well and should be proud of what you have accomplished. We all know it has been no easy feat!

Good luck on your upcoming tests. The end is near.......... smile

Cinnamon Girl · Guru

Hi Paul, so good to hear you`re on the last box at last, you`re on the home stretch now!!

Yes, the fact that your ALT level is continuing to fall and is now within `normal` levels is definitely significant, and a very good sign. Your ALT is the most important liver enzyme in measuring how well your treatment is working, and a lower number is an indication that there is less inflammation going on in your liver, which is exactly what we would hope and expect to see.

You`re right about the 12 week post treatment VL test now being accepted as SVR, and that`s because the chances of relapse after that point are very low.

Very best of luck to you, Paul, you`re doing amazingly well!! Take it easy and keep going!! smile

Paul B · Senior Member

Opened the last box of meds today so after tonight's injection only 3 to go !!! Blood results today were pretty much what they have been recently although ALT continued it's fall of 3 consecutive months and is currently at 37, the lowest level in years. Whether or not that has any significance I have no idea.

So my next blood test is at EOT followed by another 4 weeks post and then 12 weeks. I have been informed that SVR is now assessed at 12 weeks post treatment.

Tig · Admin

Hi Paul,

Yay! Still SVR and 5 weeks to go, you got this mate! Keep it going forward and get ready to cross that finish in first place! Have a blessed Easter...

Tig

Scruffy · Guru

43 weeks wohoo!! Almost there Paul. You got this in the bag. Have a good Easter.

Paul B · Senior Member

Blood done. Results back and nothing changed !! Funny how I am feeling crap suddenly.

Good news anyhow and day one of week 43. Getting close now.

Thanks for the support guys and have a lovely Easter.

Cheers

Paul

Cinnamon Girl · Guru

Good to see you`re still trucking on, Paul, we know how much of a struggle it is for you.

I remember feeling light headed and faint for the last few weeks of my Peg/Riba tx and I did have one fall... and I only did 24 weeks! Take as much rest as you need and just be a bit careful when moving around, and don`t stand up too quickly!

Let us know how the blood test goes, and keep going...you`re doing very well!!

mallani · Guru

Paul,

Light-headedness is par for the course. I was lightheaded for 40 weeks and often fell, and passed out once. My Hb was much lower than yours, so even if your Hb has dropped further, I wouldn't reduce Riba at this late stage. Best, mate.

Tig · Admin

Hi Paul,

I don't know how you couldn't be experiencing some anemia! I had significant issues with it and was constantly lightheaded near the end of Tx. Getting up out of a chair caused it just about every time. I fell a few times during the worst episodes of it. You're doing close to double the time that I did, so be careful. Your wife is indeed right!

You're getting close! Remember the light at the end of the tunnel when you started treatment? Look how much brighter and closer it is today! It won't be long until you reach the end of that tunnel and into the sunlight. Stay strong buddy, we're all cheering you on! Let us know what you find out. SVR is within reach, good luck!

Tig

MzmiffY · Veteran Member

It's great to hear from you Paul. Your wife is a wise woman, I'm glad you are fast tracking a blood test. I am sorry you are plagued by the symptom you describe. I hope you will keep us updated with your results. my experience was similar during tx and felt little difference even when there was a substantial improvement in HB level. As one of the last ppl on this protocol I feel somewhat invested in your tx journey. I want so much for you to reach svr and I'm confident you will!

keep us posted!

Paul B · Senior Member

Last day of week 42. Been continually light headed for the last 3 days. Wife insisted on phoning the clinic and as a result I will go in for an interim blood test tomorrow.

HB might have dropped a bit I guess.

Tig · Admin

Hi Miffy,

Those cramps are ugly aren't they? I hope in time that that the neuropathy lessens for you soon. That's an uncomfortable feeling that is so difficult to live with. The good news is that as time goes on, these issues for me have improved dramatically. I'm still experiencing tinnitus and don't think it's going away any time soon. Keeping my fingers crossed though. The price of SVR has been high for many of us, but it has been a price worth paying. Take care and good luck with everything!

Hope you're doing okay too Paul! Let us know how it's going.

Tig

MzmiffY · Veteran Member

Hi Paul and Tig, yes those cramps are something! Anytime I would stretch during sleep, my leg muscles would seize up followed by immediate intense pain. Something I have never experienced before. I have noticed an improvement since ending tx. One side that continues to interfere with my sleep is peripheral neuropathy. It wakes me a couple of times most nights. There is no relief, unless I actually get up out of bed. I really hope this resolves itself over time. I can live with it but it would be nice not to hehe.

paul hope your doing ok, looking forward to more updates!

Tig · Admin

Hi Paul,

Sorry to hear about the muscle cramps. I had them too. I found that they occurred less frequently if I drank more fluids, walked for exercise and stretched before going to bed. When that calf muscle cramps, it's something that makes you sit straight up from a sound sleep, almost screaming! It let up after I followed those previous routines daily. Give it a try and see if it helps. Another thing you might try after clearing it with your doctor is the addition of extra calcium and magnesium in your diet. That often helps a lot.

I still had some of the regular syringes from my first treatment back in 96! I'm a hoarder and don't throw anything away! I finally took all that old stuff to my treatment nurse for disposal during my recent tx. Better late than never!

I hope the rest is going along satisfactorily Paul. You're getting close, hang in there my friend! Good luck as always...

Tig

Paul B · Senior Member

Tig56 wrote:
Hey Paul,
I want to share a photo with you. I thought it might prove to you that the "Last" injection actually exists! Here's a photo of what I thought would never come, my last dart! I recorded it for its historical value, lol!

I didn't have the pleasure of using that system of injecting. I just have the normal syringes

I thought I would mention a side effect I did not even know existed and it was just by chance that my nurse mentioned it that I became aware of it. Muscle cramp. And it has only happened recently, started about 2 months ago and occurred around 6 times. Only in bed and if I move the wrong way. My calf muscle locks up like you wouldn't believe and I have to leap out of bed and get some weight on it as quickly as possible in order to get relief. The soreness lasts for days. Happened again this morning... SUPER painful.

Tig · Admin

Hey Paul,

I want to share a photo with you. I thought it might prove to you that the "Last" injection actually exists! Here's a photo of what I thought would never come, my last dart! I recorded it for its historical value, lol!

As for the muscle mass loss, that's a very common occurrence unfortunately. But you should know that it does return over time. I lost over 50 pounds and felt like an over cooked noodle. Just know, it will get better! Hang in there mate!

Tig

Paul B · Senior Member

Thanks all, your replies are all very encouraging and do give me that bit extra I need to keep going. Particularly since you have all been through this and come out the other side...

Had blood done today and as I suspected, levels were down again. Injection #41 tonight so only 7 left now, I am certain I will get through to the end.

So I am already thinking about how much I will enjoy getting my fitness back. Cycling, some weights, walking on the beach. I had dropped from 78kg down to 71kg ( I am 1.70 M tall) as a result of the time I spent road cycling. Didn't leave much weight to lose on treatment but I still dropped to 67kg. I suspect half of that was due to the loss of my legs muscle mass... they were like tree trunks... now more like twigs. Anyhow, I feel like the body is in great shape to rebuild. Can't wait to get back on Strava (cyclists will get what that is about). I'm guessing the start will be a bit slow, but that's OK.

MzmiffY · Veteran Member

Paul, I think breaking the remaining time into blocks will make this more achievable.

At 40 something weeks I was feeling an urgency and desperation to be done with it.

At a certain point nearing the end, I had to refocus and sometimes bargain with myself to forget about how much time was left.

I made a point of staying ignorant to my finish date. It was, in my own way, one way of lessening the pain and ensuring I made the course. Do whatever works for you.

When you come as far as you have, it's hard to reconcile shaving off time that could potentially make a difference to the outcome.

For myself, I had to know I did almost everything right. One chance only on this protocol.

Remember that I was on a reduced RIBA dose due to anaemia, my journey was made easier because of this. I think you are doing amazing given you are still taking the original dose.

One moment at a time.....you will get there!

mallani · Guru

Paul,

Something else to think about. After your SVR, you may look back and think I probably didn't need Victrelis anyway, being Undetected after the lead-in. Even without Victrelis, you would still need 48 weeks of Peg/Riba.

Back in December 2011, my Hepatologist was given enough Victrelis to treat 100 patients, as he had been prominent in the Victrelis Trials. After 5 patients declined, he ended up with ~90 patients, and he included 20 cirrhotics. They ranged in age from 45-69. Only 8 finished the 48 weeks. Of these, 7 achieved SVR. The relapser was not Undetected at week 12 ( from memory VL of 20). All others (including me) had a RVR.

Mate, with your RVR, the odds are close to 100% for your SVR. Just lie and a couch and watch the Cricket World Cup.

dragonfly · Senior Member

Hang on in there Paul, I know what it's like after having done 48 weeks previously on the old treatment. I feel for you as I can't even walk over the speed bump at the end of my road without feeling dizzy and being out of breath. But, after that treatment finished, I taught myself to ride a bike and started to run it is incredible how your body recovers. Good luck!

Nirmalee x

Scruffy · Guru

Keep up and finish the treatment Paul. You gotta go to the end keep all the odds if your favor.

Cinnamon Girl · Guru

Oh Paul, I feel your pain! You`re a hero getting through 40 weeks so far, you have amazing endurance!

You`ve almost certainly cleared the virus by now but of course the longer you can stick with it the better.

I agree, breaking down the time left on treatment into smaller blocks is the best way to go...try to concentrate on getting through each day at a time and making things as easy and comfortable for yourself as possible.

All of us who`ve been through tx with Peg/Riba know how hard this is for you and we understand about the weakness and extreme fatigue too. It`s not at all easy but remember there`s a glittering prize waiting for you in a few weeks time!

Keep going and talk to us whenever you need to, we`re here for you!

Tig · Admin

Hi Paul,

Dude, you've made it so far, don't quit! There aren't many here that can even say they understand what it's like to be where you are and how hard it has been to get there. But those that have know how you're feeling and those of us that have experienced the impact P/R/Victrelis has on your life understand your pain. Trust me on that one, please. You're almost there Paul, only 2 more months. Let the days left fuel your desire. When I got my last case of that stuff, I celebrated as I emptied each bottle. I actually kept a bunch of those bottles and used them for different things in first aid and survival kits! I made something useful out of something I had learned to dislike.

SVR will make the struggle worth it. It does seem like a long time ago now and I realize that the success was worth the battle I went through to get there. Malcolm will tell you the same. It will be no different for you. The hardest part of Victrelis treatment was the pill burden and fatigue, no question about that. But you've managed to get this far, so commit yourself to just 8 more weeks! If you need to come here everyday for encouragement, do it! We're here for you Paul!! Don't give up! Hang in there...

Tig

mallani · Guru

Paul,

40 weeks is a milestone. Every pill and injection is added insurance. After SVR you'll look on the dreadful 48 weeks as the blink of an eye. You can do it mate. Cheers.

Paul B · Senior Member

I am getting weaker by the day. I have even cut back on my walks, the only activity I had managed to keep up.

8 weeks to go as at tomorrow. I keep thinking if I can just get by for 2 more weeks and then I can assess if I will continue. Couple more blocks like that and I am nearly done.

mallani · Guru

Paul,

My ALT got below 62 during treatment and was 81 at EOT. Now, 2 years on, it's 36. You'll be fine mate.

Paul B · Senior Member

mallani wrote:

With an ALT of 18 and a RVR, you've got this beat.

I may not be looking so good since my ALT has never really dropped to a low level. Still at 49 currently.

mallani · Guru

Hi Susan,

Congrats on getting to the end. I'm glad to see your Hb is up to 96. Could I ask what dose of Riba are you on now?

With an ALT of 18 and a RVR, you've got this beat. Please let us know your EOT VL, and we'll see you in Post Treatment.

At your age you should recover quickly, but don't expect to feel 'normal' for a few months. Cheers.

Scruffy · Guru

Good job Miffy and Paul

Hang in there Paul 8 weeks its almost over. The last 8 seemed the longest for me.

Miffy job well done congratz!!!!

Best wishes for you both 48 weeks is a long time.

Cinnamon Girl · Guru

Hi Miffy, wow, last shot...huge congrats!! Just a few more pills and you`re finished, you must be overjoyed and very relieved too!

Good to see your Hb level has risen a bit and of course you`re going to feeling really exhausted by now, but once this is all over you`ll start noticing the difference fairly soon.

Let us know when you hear your EOT results and we`ll be waiting for you in Post Treatment!! biggrin

Hi Paul, good to see you hanging in there, I know it must be hard going to say the least. You`re doing so well!

Best of luck to you both!

MzmiffY · Veteran Member

Hi again everyone!

So nice to hear from you Paul, Mal, Tig and Greg, thanks so much for the kind words.

Tonight is number 48 and I can hardly believe it. One more week of pills and tx is over.

I will be grateful once this is over but right now feeling a little indifferent!

At my last clinic appt in early January my ALT was 18, HB 96 , platelets 64, albumin 38, bilirubin 5.

My HB is up nicely from Sitting in the 70's the bulk of tx. The fatigue feels the same minus the dizziness.

Hang in there Paul, your not too far now!

All the best x

Tig · Admin

Hey Paul,

You hang in there buddy! If you're the last one in Hobart and perhaps in AU, you may go down in history as the last patient successfully treated with Victrelis there! With your new health comes some fame in the Merck medical literature! Hearing you say, "The Final Countdown" sounds pretty good! I'm cheering for you!

Tig

Paul B · Senior Member

Hi Miffy

I can relate very well to your experience. I have no enthusiasm for anything and can barely muster the energy to respond to posts.

Anyhow, by now you must be a matter of days from the end... gotta be happy about that

Greg... the time just drags. Mostly.

Mal, my nurse tells me I am the last one on triple here in Hobart. So I could actually be the LAST person in Australia given that Hobart is behind everyone else.

Started week 38 today. Heading to week 40 and the final countdown.

Greg D · Senior Member

Hi Paul B and Miffy,

I only want to say that my thoughts are with you as you grind this out to completion. Not sure if it's the same for you, but the passage of time was interesting to me on my tx journey, it seemed the seconds DRAGGED on, but the weeks flew by! What's with that? wink

Much love to you both.

Tig · Admin

Hey Miffy,

I'm happy to see you once again, it's wonderful to see you nearing the end of this ordeal and it truly is a long, grueling ordeal. While only doing the 28 week protocol, I got a taste of what seemed like an endless life of fatigue and swallowing handfuls of pills every 8 hours. In a week you're going to find out what life without pills, shots and constant reminders is like. Let me say that it's a celebration that is almost as difficult getting used to as it was getting started! But you will soon realize the new found (return) to freedom and the recovery will begin. [BIG GRiN]

Your chance for SVR is great and that day is just on the horizon. Let that knowledge infuse your spirit with relief that it's almost over and the joy knowing what the future has to offer you and your Hep C free life. I want you to know that with the EOT, comes renewed energy and the happiness for life that has been missing for almost a year. You have paid a dear price for this and soon you will understand the value of what you have accomplished. Hang on, you're just about there!

Tig

mallani · Guru

Hi Susan,

Great to hear from you. You and Paul are our only Australians on the Victrelis triple so I'm anxious that you do well.

I know how you feel with the endless fatigue and the need to dose three times a day. It's a nightmare protocol and hopefully it's a thing of the past.

Your chances of SVR are excellent and it's all we've got at the moment, so soldier on. How's your Hb? Cheers.

MzmiffY · Veteran Member

Hi there paul,

I think I qualify in saying, I know how you feel.

Throught this journey my attitude has in general been quite positive, but as tx has progressed, my mind and body have grown weary from this seemingly endless fatigue.

I lost enthusiasm to post anything, mostly because I would stare at the screen void of any kind of expression or creativity.

I have never felt so dull!

You are a resilient and outstanding individual. You should be really proud of making it this far in your tx.

A strong mind will carry the burden of a weak body,

hope you find something beautiful in your day,

x

Mallani,Tig, Cinnamon girl and all other friendlies,

hope your all doing great!

Paul B · Senior Member

Hey Tig and Mal

thanks for the encouraging thoughts. Mal I think my levels were pretty much the same. I am surprised as I feel like I am getting weaker by the day. I have even cut right back on the walks.

How is the Hb going now Mal? You mentioned you posted it but I am too exhausted to find it.

Cheers all and God Bless in these uncertain days.

mallani · Guru

Hi Paul,

Doing a great job mate. I'm glad you've managed to avoid the dose reduction. I guess your Hb is below 100 by now.

Ticking the weeks off with you. I've just posted my EOT + 2 years results, and you may find the Hb change interesting.

Soldier on. You've got this. Cheers.

Tig · Admin

Hi Paul,

Good job Brother! You've made it 8 weeks longer than I did, so I think I know how you're feeling. You sound like your will to succeed is still high and a positive attitude is so important! It's a real plus that you have maintained the full dose throughout tx. That's so very important and you're to be commended.

Let us know what your tests are when you know something. I know you're having some wicked fatigue, so take care of yourself, don't push it and keep drinking that water! I can't tell you how very important that is! I know you haven't made it this far by goofing around, so keep doing what you're doing. Hang in there mate, you're getting close and you've got that dragon on the run! Keep it up and good luck!

Tig

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