48 week blues

[pearse]

I don't post to often but i read the posts everyday. I am really down today, tomorrow would have been my last shot. I am doing what my doctor wants, thats 4 more weeks. I have been hit with the worst sides lately. You know the ones, rash all over my body, pain so bad in my jionts i need help out of bed. I still go to work and carry on but it is getting hard. To make things worst my hair is coming out like crazy. I liked it better when i looked like a chia pet! Oh well, my pity party is over, hang in there everybody! 1a, peg and riba 1200mg a day.

[mikesimon]

I know well how you feel. Sometimes I just want to quit now and live with whatever comes. But you're really close and if your doctor wants additional tx you just got to bear with it. I quit last year before my doctor wanted me to because I felt like **** and had been clear for several months. I relapsed quickly and still wonder if doing just another month or two would have made a difference. Now I'm doing Pegasys for probably a total of 18 months. It seems like an eternity and I wonder how I will get through till June. Just try to hang in there and soon you'll be done and you'll know you gave it your very best shot. I wish you good luck. Mike

[TravisB]

Believe it or not, your doctor is doing you a favor encouraging you to go beyond the normal protocol. Most doctors get tired of dealing with their patient's heavy sides and even encourage some to quit early.

At this point the only thing that gives you a better chance of SVR is either higher doses in the very beginning or doing TX longer.  As lousy as TX is, the longer you do it the better your long term chances.   Try to grind it out one day at a time and post more often; maybe we can help you through the next 28 days.

Hey Mike:  I'm considering TX for a second time and am wondering what were the protocols of your last few TXs, are your chances better this time and if so, why? Thanks. Travis

[CARUU]

You guys are so great to support each other the way you do!  It's uplifting for me and I haven't even started tx yet.  Hang in there Pearse and keep coming back to this forum.

[mikesimon]

Travis, I'd like to think that my chances are better. First I practically cleared in 12 weeks. My load went from 3.8 million IU/ML to 12IU/ML. Secondly I am taking a full dose of Pegasys and 1000 mg. ribavirin whereas last time I was taking a reduced dose of Peg-intron and 800 mg. ribavirin. The last time I didn't clear for almost 6 months and I probably stopped too soon. But really, I don't know what is going to happen. I have been concerned about how my transplanted liver would react to unbridled hep c for any length of time. I don't know what I would do if I had my own liver. Perhaps I wouldn't be so aggressive. My first tx was with regular interferon at a regular dose and 800 mg. ribavirin for 48 weeks. I never expected to clear and was just hoping that I wouldn't reject and that the virus wouldn't run wild and damage my new liver. So it was in my mind just a stop gap measure. I do not bring a lot of optimism to my tx because my situation is so different. The anti rejection drugs and the manner in which transplant patients respond complicate things significantly. I just try to get through this one day at a time. On the bright side my liver shows no fibrosis whatsoever so I figure my constant tx has been of benefit. Good luck. Mike

[cc2]

Hi Pearse,
Please listen to your doctor and try for four more weeks.  I know you must feel like sh** and depressed thinking of four more wks, but hopefully you will be smelling like a rose...You can do this, so dig deep inside and try to complete the four wks.  

Mike,
Wow - I commend you greatly in doing 18 months of tx, here is a big hug.  I don't comment too much, but I keep reading to try and keep up.  

Prayers and hugs to you both....

[raheem]

Oh man, don't cash it in now! You are almost at the finish line.  There are so many of us that can only hope, wish, pray and dream to be in your shoes. Tough it out and give yourself the best chance to be healthy.

[DownThisRoad]

I am starting to understand the tremendous responsibility that we place upon ourselves when we decide to do treatment. I am in my 18th week and as time goes on it seems like an almost impossible challenge for me to accomplish.

I geared myself to think of treatment in terms of months, now I am lucky if I get through my day without this treatment medication consuming all my thoughts and zapping all my strength.  I too am looking at 48 weeks.

Pearse, if you have already cleared the virus, you should trudge ahead and put in this other 4 weeks. You've come so far, only 4 more weeks. If you don't do it, you will always wonder what if I would have done the extra time with my medication.

I wish I had your decision in front of me right now, to know that I had 4 weeks left to do. Life would not seem so hard.

Stay strong !

[SoFla]

Hey Pearse,

I agree with Travis. Your doctor is doing you a favor. 4 more weeks is nothing in the larger picture.
Once cleared, who the hell wants to go through this again!  
We are also talking about going the extra 4 weeks to extend the highest odds in sustaining viral response.

It's encouraging to hear people moving from the norm and doing whatever it takes to beat this virus.

Hang in there!!
DS

[layla]

I am so glad you wrote this post. I do hope you hang in there for the 4 extra weeks. I'm on shot 26 and plan on doing either the extra 4 weeks or an extra 3 months. I hate to think of it now. You are so very close. Best and warmest wishes to you. LL

[ts2010]

Hang in there Pearse,

I know how you feel because I am in week 46 and the tx has never been harder on me than these last few weeks.  I don't have much to spare but what little energy that I have I am sending your way.

It might help to do as someone suggested here a long time ago.  Tell yourself that you will do your meds today and when tomorrow comes you will quit.  Tell yourself this 28 times and on that 28th time you can quit!  This thought has helped me through many days of tx.  I hope it will help you.

TS

[ashleesmom]

Pearse,  I too am looking at 52 weeks.  Tomorrow will be #44.  The second six months of treatment have really kicked my #@%!!! Some days it is so hard to make myself get out of bed and go to work. Many times I have wanted to throw my hands in the air and call it quits, but I think about my daughter, my friends, family, and employer that have supported me through this, and if nothing else, I owe it to them to continue.  They have paid a price by dealing with my attitude, my withdrawal from the world, and my rages.  I carry on only for them.  You hang in there...you'll be glad you did...in a few months, this will hopefully seem like just a bad dream.  Take care of yourself!!  deb

[willing]

relax, just breathe, relax, just breathe. You will get to the  end - there's no doubt. Thinking of you and wishing you all the best.

[simpleman]

I'm really glad you guys posted this. My first 6 months were a breeze,but the last half (shot 36) is no fun. I thought I was the only one who felt worse at the end. I told my wife I was really sick of it. That I feel so OLD. I'm too young(55) to be old. Hang tough and we will all get through this together.

[TravisB]

Mike:  Maybe you had a lower viral load going in this time or maybe it's the fact that you have no scarring on this liver.  Both are predictors of success for naive TX patients so maybe the same applies to second and third timers.  I think that the most tangible factor is that your dosage has been increased.  Keep it up. Travis

[MajNeni]

Hi, Guy,
You've toughed out some bad times before.  Really bad, as I remember.  This is a short stretch, 1/12 as much as you've already accomplished.  Think of what you have to gain, think of how much it improves your chances, and then think of Mike's 18-month endurance course.  Yours ends up 12 months, right?  one year's tx?  
Will hold you in the Light.  Maj Neni

[mikeymike2]

If anything has persuaded me not to even start this tx s@@t it is reading this thread!


People with severe liver problems have little choice but to start tx - so good luck to you all and hang in there. But this thread confirms my feeling that those with mild liver damage should wait until the medication improves - assuming they can live with the thought of being infected. (see thread started by Bicky on 3 august for fuller discussion)

[Indiana]

Hey buddie. I see you're still hangin in there. I'm glad you're gonna make it through.
I ended up at 50 weeks. Just the way my refills worked out. I have seen some older evidence that showed that doing 52 weeks gave us type 1's slightly better odds than 48 weeks. Beyond that the possible long term effects of the meds overrode the benefits.
The end of my tx was almost as bad as the beginning. It was more of a mental thing at the end. I do NOT regret doing the extra few weeks.
You are giving yourself your BEST shot with this little extension. If things take an ugly turn now you are at the point that you can always cut down or stop without feeling too bad about it. Just do what you can.
Hang tough pal. I'm REALLY proud of you............

[Galen]

Hang in there and I will be right at your side.  I have 4 more weeks to go, the sides are wearing me down, but I am determined to go the distance.  We are all in this together!

[giddyup]

I went to my psychologist the other day to explain to him about these recurring dreams I've been having. In one I'm a wig wam and in the other I'm a tee pee. "Ah" he said,"I see your problem."
You're two tents!"- I hope you feel better.

[BethUK]

I was in a similar situation.  I got to 46 weeks and assumed (from chat in the forum, rather than listening to my doctor), that I was doing 48 weeks.  I went to pick up my prescription from the hospital and chatted to the doctor about how happy I was to be finishing in 2 weeks.  He replied "No we do 52 weeks for type 1's here".  It was a total bombshell - I had psyched myself up to only do 48 weeks, and by then felt a physical and emotional wreck. I had a holiday and my new life planned!

I decided I could take no more, and just did the 48 weeks.  It's worked out fine so far, I was clear at 6 months and have my 1 year post PCR next month.

Good luck with whatever you decide.  It will all seem just like a bad dream in a few months time!

[pearse]

Thanks everyone for your support. I was told from the begining i was doing 48 weeks. 2 weeks ago my doctor said to do 52. when you have your sites on the finish line and it gets moved it blows your mind alittle. I put down my sides so people can get some sence of what tx is like at 48 weeks. they could be hard or none at all.Most important is to not quit! I will take it one week at a time!
Mike, i bow to you for doing 18 months! Hope all have a side free weekend!

[minneapolis]

i did my 48th last night. if my dr said "hey, how about being a sport and doing a couple more weeks?" i don't know what my answer would be. here in minneapolis, we are draining the mississippi as fast as it flows our way. no rain in a month. think we are pumping out about 120-140 mgd. you and i started out together way back along with charlieh. can not believe it has been almost a year. charlie, ah... the day we both got our numbers.....memories.
my best to both of you. lynn

[madbyron]

Congrats on 48. I bow in your general direction.

[DownThisRoad]

Lynn, I knew from one of your previous posts that you were comin up on that last one.  You are strong, and you've done it !

Did it really seem so long or is it how you think of years you've lived?  Sometimes when you think about it, it doesn't seem like a year and other ways you think about it, 1 year seems like 10.

Congratulations, you are determined ! Treat yourself well, you deserve it.

[willing]

the train draws into the station and the long, strange, trip comes to a close. Congratulations Lynn, and have a great weekend.

[Minttwist]

Now you can go back to loving your neighbors again :-)!

Don't get mad; just having fun with you...and I'm happy for you.

[minneapolis]

thank you for your kind words. i am truly touched. lynn

[mikesimon]

Congratulations Lynn. You should be ready to celebrate once you start feelin mormal again. Good luck. Mike
Pearse, I plan on going till June. That's a whole different thing from actually doing it. I don't know that I will be able to but I am going to try. My thinking is that although my load was only 12 IU/ML at 12 weeks I didn't have another test till 24 weeks at which point I was clear. So I would like to do 1 year post clearance. Maybe 9 months post clearance would be enough since that's what most do if they clear at 12 weeks. See how my mind is working? I'm already trying to shorten the tx. So I really don't know if I can make it till June.  Mike

[Tess Marie]

I just took my last injection on 8/22, (49 weeks). I know exactly how you feel. The last 4-6 weeks were pure h---! I began to question myself. Why would the last part of therapy be as hard or harder than the beginning? I have found that there is no rhyme nor reason to how this medication effects everyone. It is extremely tough! Without the support of family, friends, and God, I question, if I could have made it! But, there is light at the end of the tunnel-HANG IN THERE-Your life is invaluable, take one day at a time, YOU CAN DO IT! I suffered from every major & minor side effect that the meds had within their power to hand out. NOW, AFTER BEING OFF OF THE MEDS FOR 1 WEEK, IT IS ALMOST IMPOSSIBLE TO EXPLAIN HOW MY BODY FEELS. IT IS WONDERFUL!! Still a little winded & itching, but hey, no big thing. It's almost as if it was someone else going through that therapy! The world is a beautiful place again, and my life is just beginning. After feeling this well in just one week, I can hardly wait for tomorrow. Be good to yourself while on therapy, lean on others support if needed, and if I can answer any questions relating to my therapy which you think might help, please e-mail me at ***@****. For all of you, continue the battle, it is definitely worth it! Have a wonderful holiday week-end and may God bless us all.       Tess marie

[pearse]

I am so happy for you!!!! I remember when we got our numbers, the longest 3 months of my life!. Good Luck, and let us know how you are doing post tx.
Mike, if you do the full time or not you have my respect. anyone who can be on this more than once is a strong person.

THANK GOD FOR FOG!!! makes the weekends go by