Hep C Discussion Forum

MzmiffY · Veteran Member

RE: Started Boceprivir yesterday

Paul B · Senior Member

Well that's it for this thread. Treatment has been successful and it's time to move on to the next phase !!!

I'll be over in the "Post Treatment" discussion.

Thanks to Mal, Tig, CG and everyone else who took the time to respond here. Treatment was tough (far less so than for many of you).

The encouragement I received here has been invaluable. My experience has convinced me that SVR is a realistic outcome for the vast majority who are impacted by this nasty virus.

Cheers,

Paul

Cinnamon Girl · Guru

Huge congratulation to you, Paul, we`ve all been waiting for this and I can hear your sighs of relief from here!!

We were pretty certain you`d get your SVR but nothing beats having the result there in black and white...are you going to frame it?!! I`m so pleased for you, you`ve made my day!!!!

I hope your recovery is going well, enjoy every day of your Hep C free life!! biggrin

Do keep in touch!

Paul B · Senior Member

Thanks guys. It is surreal. Hard to comprehend life without sickness. If I ever have any doubt, guess I can just look at this

Matt Chris · Guru

Hey Paul

Way to go buddy, after three rounds and 20 years well deserved, upward and onward for you.

WTTROYL

matt

mallani · Guru

Hi Paul,

Congrats mate. Never in doubt. Enjoy the rest of winter in Tasmania. Cheers.

Tig · Admin

Outstanding Paul!! I know you're floating a foot off the ground right now. You paid your dues and then some Brother. Congratulations! I know you've got a lot of living to catch up on, so go forth and enjoy! Good luck buddy...

BIG WOOT

Paul B · Senior Member

After 20 + years of feeling sick every day and 3 rounds of treatment... SVR 12.

mallani · Guru

Hi Paul,

I'm waiting for the SVR result.

In Qld., nobody is starting Simeprevir. Harvoni is expected to go on the PBS by October. Cheers.

Paul B · Senior Member

12 week EOT blood done today. Results may be available on Friday...

Nurse informed me that new treatments are imminent here in OZ. Apparently there is some concern around people going offshore for treatment.

Interesting as Simeprivir became available only recently.

Cinnamon Girl · Guru

Well, I suppose you could call that good news, Paul!! I know it must be a relief for you.

Your lab results are looking good, platelets heading in the right direction. Just go a bit easy on yourself for a while. I can understand your impatience to get your fitness back after such a long treatment but let yourself recover properly first, there`s no rush.

I get frequent colds and `fluey` virus infections and I used to worry every time I felt unwell and low on energy. As time has gone by though I`ve accepted that the virus has well and truly gone. And that I`m going to continue catching colds!

Hope you feel better soon, not long till you have your SVR.. smile

Paul B · Senior Member

Good news !!! Went to see the GP today and he confirmed that I have picked up a bug. Antibiotics started. Relieved.

Had LFT since I was in there anyway. HB 173 and platelets improved at 129.

Only 3 weeks till final PCR. At this point, with levels heading in the right direction, I am beginning to build in confidence.

Paul B · Senior Member

Thanks guys. It is a relief to get feedback from others who have been through this and know more than me.

I am definitely backing off the physical for a while. Same activities but smaller doses.

mallani · Guru

Hi Paul,

Take it easy buddy. Winter in Tassie is pretty bad compared with Queensland.

You'll still get 'colds' etc but your immune system is in no danger.

Let your body heal after your ordeal- don't overdo it for a few more months.

Waiting for your SVR post. Cheers.

Tig · Admin

Hi Paul,

You're correct, the virus is reduced to an undetectable serum level and this allows the immune system to keep it that way. I don't think you have a thing to be worried about. It's going to take an immune crisis (imo) to even consider a relapse. Once SVR12 is achieved, the rate of relapse at any point in the future is <.5% and likely gets more remote as time goes on. You were SVR4, so your risk of relapse is very similar (low, low, low).

With that said, you're still going to get sick occasionally and it shouldn't be something you should worry may cause a relapse. You have passed the testing process each time and until you're well down the road, it's only natural to wonder "what if". The only thing that seemed to convince me was time. It will become less of a worry and more a memory. One you're always glad is behind you. You may want to take it a little easier until you've had time to clear all the drugs and had some time to recover/recuperate. Even though you have done your best to maintain your physical conditioning, your mind and body took quite a hit. Treat it kindly for a few months and then amp it up as you feel able. That's my opinion and I'm sticking to it!!! smile Good luck and I'll trade you some heat for your cold!

Paul B · Senior Member

I have read in various places that the Hep C virus is not eliminated by treatment but reduced to a very low level which the immune system can deal with.

I completed treatment a couple of months ago and embarked upon a fitness programme within a few weeks. I do some weights, not too heavy and only a very short session, some pushups and cycle 50 kms twice a week. I have endeavoured to keep it reasonable and not go overboard. I planned on adding a third day of cycling, however, four days back I went out a little harder and it was quite cold (winter here in Tassie). I got a sore throat and the glands in my armpit have been feeling vaguely swollen. Now I am concerned that I may have compromised my immune system by going too hard and given the virus an opportunity to make a comeback. I stopped the weights and omitted yesterday's bike session, though I plan on going out on Thursday.

AM I being paranoid (nothing new for me) or is there a reason to be concerned ?

MzmiffY · Veteran Member

Thankyou so much Mal,CG,Paul,scruffy,Tig and Greg.

I am lucky to have the benefit of your experience and wisdom . It's comforting to know this will pass. in ordinary life I am quite passive . I have surprised myself recently and I have to agree CG, it does feel nice to vocalise things I would normally keep in my head. I like that there have been moments where I forget to just be agreeable. I like the idea of counselling also. I was introduced to "therapy" as a child . There is a unique comfort with the exchange of purging and listening.

thanks to all of you , tonight I feel lighter...

Paul, my apologies, I don't mean to take over your thread. Hopefully you are feeling as reassured as I am right now that we WILL return to our own idea of normal.

x

Greg D · Senior Member

Hi Mzmiffy,

I know exactly what you are saying. It's like I have had to find myself again. Always double checking what I was about to say before I spoke to make sure that my "real" me was engaged and actually doing the talking...as opposed to blurting out inappropriate or insensitive hogwash. I have apologized a thousand times and fatally damaged relationships but kept the ones that were really important to me by explaining (at the appropriate time) that this is a side effect of treatment (you don't have to say what treatment was for).

For me, I have made a special effort to get used to socializing again, with people I don't know at first, to reintegrate and get to know myself again- socially. I am finding it interesting that I actually had to do this as it has taken a lifetime of 'working' on myself to be that better person I don't want to lose. Totally important right? Deep stuff that I don't take lightly.

I used to drop into a hep c support group but I stopped doing that because I was just rehashing all the feelings and thoughts over and over that I wanted to leave behind. Now I drop into a men's group every Monday evening (I hope you have access to any type of social group that you feel comfortable in i.e. women's group or whatever is available to you) where anyone can speak confidentially about issues that are affecting their lives and not be interrupted while speaking or judged. I have even made some solid new friends from these gatherings and it has helped me tremendously to slowly get back on 'my' track.

The hep c group was helpful for awhile- to be with those who had been through the same journey but after some time I found myself taking on everyone elses' baggage in my recovery as I was not centred enough to separate my own issues from theirs. There definitely was a point where it wasn't helping anymore to go back through the same s**t over and over and I felt that I had to 'move on'.

In short, I would look for a hep c support group and take things from there. If one is not available to you look for a group that you feel comfortable sharing your struggles with, which may or may not include counselling. Going to counselling does not make you weak, it gives you the reflection you need to find your way back to your 'self'. If this is enough of a priority, which I know it is judging from the time you took to post this, you will (with work and perseverance) get centred again. You cats are comforting and great company but you need something more lol.

One more thing I must add is you REALLY need to reopen the doors to your sense of humour and don't be afraid to laugh at yourself again. biggrin

I truly hope this helps Mzmiffy, as it is a very important aspect of recovery and I thank you for having the courage to share it with us.

Scruffy · Guru

Hi ya Mzmiffy

I'm a 48 weeker also. It takes a while but your way ahead of the game.

"it makes me feel out of control and deeply sad that I feel so removed from my " real" self."

If you know your "real self" then your already back there just let your system clear.

Tig · Admin

Hi Susan,

I have to echo the same thoughts. I was a 28 week triple dip disaster and felt just like you are. There is nothing easy about that journey, even finishing it proved difficult. But as everyone has told you, it gets easier with each passing week. The emotional distress took time for me, a lot of time. It took me a full year to get back to my happy place and now, after two and a half years, most of it is a memory. The joint issues are even improving, so I suppose that has taken the longest. My best advice is to hear what we are saying and know that you will see the same improvements over time. I'm thankful that I can now look forward to that time, because I know that the sacrifices made to destroy the Dragon, have made that possible. Let your the trophy that is "SVR12", be your reminder of better days ahead. You won Susan, congratulations!

Cinnamon Girl · Guru

Hi Susan,

I know exactly how you feel, that was my experience too when I did my 24 week treatment with Peg/riba, I felt as though I`d turned into someone completely different from my normal self, and it was someone I really didn`t like. By the end of tx I had become a bad tempered, snappy, anti-social bitch, and I felt that my emotions were out of my control. The one good thing that came out of it was that I became a lot more assertive (and how!) and some of that has stayed with me. For me that was a very useful lesson, even though it was a very unpleasant way of learning it!

Don`t worry, it doesn`t last, you will return to your usual self, it just takes a bit of time. Just keep reminding yourself that it`s the effect of the meds still, it`s not you, so go easy on yourself while you`re recovering.

And big congrats on your SVR12, that`s wonderful, and very well deserved! smile

Paul B · Senior Member

MzmiffY wrote:

At this point I feel most concerned about my mental state. I don't like who I am or how I have felt these last couple of months.
I have become a super biiitttccchhhhh!

My experience exactly. Don't worry, think long term. You will be OK once your system has normalised.

mallani · Guru

Susan,

Be easy on yourself. You've been through 48 weeks of hell and it can take at least a year to get over Riba and Interferon. You've still got Riba in your system with all the mental problems it causes. Short fuse, apathy etc. etc.

Just relax, look after yourself, and rejoice in the fact that your liver will not suffer any more damage and will heal itself. Cheers.

MzmiffY · Veteran Member

Hi Paul,

It's interesting to read what your experience is and continues to be post TX.

At this point I feel most concerned about my mental state. I don't like who I am or how I have felt these last couple of months.

I have become a super biiitttccchhhhh!

It scares me because, I don't know myself to act and react as I do.

i feel incredibly short fused, apathetic with ridiculous outbursts based on absolutely nothing.

it makes me feel out of control and deeply sad that I feel so removed from my " real" self.

When I am on my own, in the company of my cats, I feel happy and content. I wouldn't say I am depressed or anxious. Just more of a social nightmare right now.

Before TX I was always stupidly happy and easygoing. I guess I am worried I will not return to who I was and how I felt.

At 12 wks EOT, I feel at my worst emotionally.

Have others experienced this on IFN or RBV?

Is there hope for me or will I just be a horrible person for the rest of my days!?

x

Paul B · Senior Member

MzmiffY wrote:
I have to throw my hands up at this one but maybe someone else has some ideas....

Yea, it is pretty random for sure. But it gets better. Previously, for years I had to go to the bathroom 4 or 5 times during the night, now it is only once. (prostate is fine)

I have heard that there are various post treatment issues associated with Interferon and can report my experience at roughly week 6 post. And it isn't too bad.

I developed an arthritic type pain ( I am guessing here since I don't have arthritis) during treatment in my left elbow region. Still have it.

Psoriasis which I think was caused by my earlier Interferon experience has now appeared at new sites.

My mental health seems fragile.

No complaints, but I do hope for an improvement.

For what it is worth, I think the improved urination is due to a reduction in inflammation throughout the body which is now resolved as a result of clearing the virus.

I continue to experience muscle pain in my legs which I have had since first contracting Hep C about 25 years ago. Sometimes, before a ride with the guys, I will take an Advil (200 mg Ibuprofen) which really helps. I don't take much mind you. Last year for example I took around 24, and that was even on treatment. What is the consensus on consumption of this nature ?

MzmiffY · Veteran Member

I have to throw my hands up at this one but maybe someone else has some ideas....still, It sounds like a huge plus for you!

Well I decided to trust data over my specialist and did my PCR today, should know Wednesday if it's my time to celebrate.

Thanks Tig, Mal and Paul, collectively you made see the light.

Paul B · Senior Member

Tig56 wrote:
If you make it to EOT+12 and remain undetected, you win!!!

We need a like button !!!

I have had an interesting development since EOT. Prior to treatment, I had a problem with my bladder. So on bike rides with the bunch, I would need to stop for a leak a couple of times during a standard 2 hour ride. Obviously even more than that for long rides. Well since the EOT, that no longer seems to be the case. I went on a 42km ride last week and a 52 km ride today and on both occasions I did not need to stop at all. On both days I even stopped for an hour at the cafe for a coffee after the ride. For me, this is a big deal. Our rides are fast and the bunch does not stop for such inconveniences. Any clues ?

Tig · Admin

Hi Miffy,

Here's some information on SVR 12 vs. SVR 24. The new standard is indeed SVR 12. It's hard to believe and there are still people holding onto the old guidelines. If you make it to EOT+12 and remain undetected, you win!!!

http://blogs.hepmag.com/lucindakporter/2015/02/hepatitis_c_treatment_svr.html

MzmiffY · Veteran Member

Hi Paul, reversal is in motion....I do believe this.

i questioned my NP today on the 24 wk EOT PCR. She told me that is the current standard here but elsewhere is 12 wks..hmm.

i have the option to do the PCR now if I choose. During todays appt the GI waltzed in and managed to make me feel ridiculous for any concern that my ALT had risen from 12 wks prior.

I saw her for less than one minute . The NP on the other hand was wonderful. I can freely ask questions and she doesn't make me feel anything other than normal for giving a **** about my liver status.

wishing you well,

Paul B · Senior Member

Hi Mal,

well I am skeptical about the F3. I believe the original F4 reading was closer to reality but I do live in hope of reversal at some stage.

As far as having an easier time on this occasion, who knows. I was supremely fit from fairly competitive cycling, that is all I can put it down to.

Before the introduction of the DAA, I mostly did not feel like I was on treatment. The day after my injection was pretty normal. The previous two times

were much different. Within a few hours of the injection I would be experiencing hot and cold sweats. I don't know what the readings were but going

by how I felt I must have been quite anemic. It was really tough going. Much worse than this time around. When I started treatment this time I

wondered if I was going to be able to tolerate it.

Previously my ALT/AST dropped to normal very early, but that lasted only till the next blood test. This time, it dropped and stayed down for the

entire treatment period. After such a long time of being infected, I was skeptical about a successful outcome, but I must say at the moment, I

think I may be cured. Guess I will know in 8 weeks.

mallani · Guru

Hi Paul,

Just a word of caution. I think you had your initial examination using Fibroscan, which gave a reading of 17 kPa (which is cirrhosis).

You then did a post saying that Fibroscan was no longer available at your hospital (? Royal Hobart), and that add-on systems were being fitted to normal Ultrasound machines.

Liver elastography can then mean a range of procedures. Fibroscan (Transient Elastography) can only be done on a dedicated Echosens machine. The 'add-ons' you mentioned may be either Shear Wave Velocity (SWV) which I have seen on a Siemans machine. There is also the Supersonic Image Technique (SWE) and one other I can't think of at the moment. These add-ons give a velocity measurement, which is then translated into a Metavir Fibrosis Stage. The add-on I saw cost ~$50k, compared with $250k for an Echosens machine. IMHO, there is doubt whether the add-ons are as reliable as Fibroscan.

Just another question. In your two previous treatments with the old Interferon and Ribavirin, you said you had dreadful side effects and stopped at ~12 weeks each time. Why do you think you had a much easier time this time around? For most, Peg-Interferon caused worse side effects than the old 3x weekly Interferon. Not that it matters, you're on your way to SVR.

Whether you believe your nurse and that you're F3, or believe the original Fibroscan makes a big difference to follow-up. Up to you mate. Cheers.

Cinnamon Girl · Guru

HI Paul, that all looks good to me, and your ALT has dropped again to 32 from 37 in your April lab results which is a sure sign that there is less inflammation going on in your liver, which is what we`d hope to see.

Your Hgb and RBC levels are well within the normal range and your WBC are only just below. Platelets a little on the low side but not at all bad considering how long you`ve been on interferon. Platelets tend to be lower with cirrhosis anyway, although your elastography reading of F3 sounds encouraging anyway.

Nothing to worry about there, so far so great! smile

Paul B · Senior Member

MzmiffY wrote:
Looking good Paul! im curious, did your NP confirm an f3 status through bloodwork alone?
I'm curious if your specialist is requesting PCR at 3 or 6 months?

Thanks !

No the F3 reading was determined via elastography. The original F4 reading was determined via Fibroscan which is apparently the more accurate of the two methods.

PCR will be done at 12 weeks. That is the standard procedure currently.

All the best and good luck with your results !!!

-- Edited by Paul B on Tuesday 9th of June 2015 09:35:01 AM

MzmiffY · Veteran Member

Looking good Paul! im curious, did your NP confirm an f3 status through bloodwork alone?

Im so happy for you, hoping my results will be something to celebrate.

See my GI tomorrow to find out my 3 month EOT bloods.

I decided NOT to go against her instruction to wait 6 months for the PCR.

I'm curious if your specialist is requesting PCR at 3 or 6 months?

cheers and well done!

Paul B · Senior Member

So had my EOT 4 week blood test.

ALT 32 AST 40 Albumin 39 HB 157 WCC 3.4 RCC 4.91 Platelets 115 Neutrophils 1.4

Nurse confirmed that I had gone from F4 to F3, though I will wait and see what that result is 6 months from now.

While the numbers seem good, I am not sure how they sit in context within a wide range of results.

So far so good I guess.

Paul

Scruffy · Guru

Keep it up Paul.

One month EOT your for sure on the right track. Muscles have way of coming back but it takes a while don't get frustrated. Be stubborn keep on keepen on. It took me a year.

Not the time to be lazy, best wishes.

Paul B · Senior Member

Scruffy wrote:

After 48 weeks of inter/riba 12 weeks incivek, 41 weeks of anemia, 40 shots of procrit, 20+ shots of neupogen and 3-4 transfusions (i forgot how many) my muscles were like water. One year out of the box I'm on my way back.

Hey Scruffy. You certainly had a much harder time with treatment than me. I found it tough going but not to the degree which you experienced.

You definitely look as though you have your strength back now. Fantastic. I'm struggling a bit with the impact of the muscle wastage, my effort on the bike the other day was crap.

I have an appointment with an exercise physiologist in a couple of weeks, so hopefully that will provide me with a pathway to regaining my lost fitness.

Cinnamon Girl · Guru

Looking good, Scruffy, you`ve certainly built up some muscles since you finished treatment!

Love these photos,thanks guys! smile

Scruffy · Guru

Good work Paul.

After 48 weeks of inter/riba 12 weeks incivek, 41 weeks of anemia, 40 shots of procrit, 20+ shots of neupogen and 3-4 transfusions (i forgot how many) my muscles were like water. One year out of the box I'm on my way back. It just take time. Keep on keepen on.

Cinnamon Girl · Guru

That`s fantastic, Paul, well done!

I must say your new hairstyle looks cool, in more ways than one! smile

Great to see you looking so well and I`m very pleased you`re making such a good recovery!

Paul B · Senior Member

Well nearly a month since EOT and I made it out on the bike for the first time in a year. 2 hours and 42kms. Muscles have wasted to nothing and it was tough going at times, but a beautiful winter morning and lovely to be out in the sun. After 3 rounds of interferon, my formerly long hair has just about been destroyed, so time for a new style. You know cyclists pay thousands for this type of aero!!!

DF Ride2.jpg

-- Edited by Paul B on Thursday 4th of June 2015 01:34:15 PM

Tig · Admin

Absolutely Paul, F3 is not considered cirrhosis, advanced, yes. But there is a line between the two. I would be pleased to hear that as well and was actually. My doc figured before the biopsy that I would be cirrhotic. Simply by years infected and lifestyle during many of those years. I haven't had a follow up fibrosis staging, but one of these days I'll track down a Fibroscan provider and do it. I'm currently satisfied with what life has given me!

Paul B · Senior Member

Thanks Tig. Don't worry, I have no regrets at doing the full 48 weeks. After two previous failed attempts I was willing to do whatever was needed to win the battle.

The reason I made the post is because I am a bit encouraged about the F3 result as I thought it might be an indication that I may not have quite reached cirrhosis,

and I wondered if this was a correct assumption.

Tig · Admin

Hey Paul,

The way I look at it is this, F3 or F4, they are both advanced stages of fibrosis. Had you not run that marathon, you would have always wondered if 28 weeks was enough. I know I did and I thankfully got lucky. My doc refused. Look at it this way, you dealt your dragon the hardest blow available to you and it has succeeded in getting you where you are today. Don't look back and wonder why, and what if, look forward and say why not! SVR is just around the corner, get ready!!

Paul B · Senior Member

So my elastograph result came back as F3. I had thought I was Cirrhotic but now I am not so sure. Any thoughts ?

The hep nurse had told me that they were not convinced I was cirrhotic but elected to blast the virus with the full 48

weeks in order to annihilate the dragon.

mallani · Guru

Hi Paul,

A Fibroscan score of 17 is good as your cirrhosis has not progressed.

Usually, any reading above 14.5 kPa is taken as cirrhosis, with a probability of ~95%. My doc uses 14.

In a year, get another one and I'm sure it will have dropped. My initial reading was 30.1, which has dropped to 8.8 18 months after SVR, but I don't believe it.

Remember you still should have a 6 monthly Ultrasound or imaging to exclude HCC. I'm due for one next week!! Cheers.

Paul B · Senior Member

Thanks all. Starting to pick up, have been doing some push ups and some hard paced walks. Planning on getting back on the bike by June 1st and joining the gym. Can't wait.

Had an elastograph today. The operator mentioned that the score was 1.7 which apparently is consistent with the fibroscan reading of 17 which was performed at the start of treatment.

She commented that the similar score value was a good result as it indicated that treatment had not compromised my liver. Now while I have a good understanding of most

hep C matters, this is something I have no knowledge of. I'm sure Mal or another of the esteemed members could illuminate the subject further.

Cheers

Paul

Cinnamon Girl · Guru

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

Excellent result, Paul! I really don`t think you have anything to worry about, just relax and concentrate on your recovery!

Looking forward to celebrating SVR with you!

Take care and keep us updated!

MzmiffY · Veteran Member

Congratulations Paul! So happy for you, really outstanding!

Look forward to your next results!

Paul B · Senior Member

Thanks all for the encouraging words. Yep... it's a great day indeed.

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