3 AWEEKS POST TX.....WHAT IS GOING ON WITH ME??

[fresnoborn]

I finished 48 weeks of tx 3 weeks ago and am so glad it is over with.  But.....now i don't understand what is going on with me.  I have had only one good day since tx ended and have had 4 anxiety attacks (which i never ever had them before).  I guess I just wanted to feel better once i was done with tx and it is just not happening the way i was hoping.  I find myself crying for no reason.  Tears that I did not have during tx (i had no saliva, no tears, totally dry body) and now the tears are just pouring out.  I'm wondering if there is a sort of withdrawal or something that we go through once we are no longer taking tx meds?
I hope everyone is doing well and Happy fourth of july.

[friole]

Hey, fres, hang in there. We were about the same week, but I am doing an extra 8 so am not done yet.  You have had such a rough time - lost so much weight - had a hysterectomy in the middle of tx -- and I think something else, can't remember.  My daughter had anxiety attachs and I know they aren't fun.  You need to talk to your doctor to get an rx for them.  I know you will be better soon.
Kathy

[Algernon]

Here's hoping next week is your last shot!  That human pin cushion bit is for the birds.  Happy 4th to you.

[fishdoc]

Please you guys are such an inspiration to those of us that can't even see the tunnel yet, be kind to yourselves!!  Remember, patience is a virtue, and some of you are SSSOOOO patient with others (that I want to just rip their little selfabsorbed heads off of), that you forget to be patient with yourselves....

my son (the PA) told me: you are hitting yourself with massive doses of cytokines, natural products that the body uses to fight bad viral infections like the flu.  If your body has been fighting the flu for a week, think about how you feel when your over it?  Six weeks to recover, if your lucky, then add another 47 weeks of the flu, and you have interferon therapy.  As I told Friole in an earlier thread, we want so desperately for normalcy, all during tx, we just want some semblance of our life to be normal.  I crack jokes, and walk out and feed the birds, because that is what I can do, and nothing else.  I go to town maybe twice a month, if I have to.  Month 4, hubby did all my shopping, I never left the house except to work.  I am ssooo sorry that your feeling anxious and depressed, but people need you to be spiritually OK, and your bodies WILL catch up, but its been a hard year for them too.  Yall have a job to do still, and thats helping the newbies along, so please: your special, each and every one of you has run the good race, and you deserve to be as kind to yourself as you are to others!

[Mister beagle bailey]

I'm waiting to get my post PCR test done but I did have a CBC done to see where my AST and ALT is and should get it back Wed.  I'll wait for the PCR till after I'm done taking the procrit, which I hope next week is my last shot.



Have a great 4th of July!

beagle

[susan400]

Something that really gets to me is that other people in my life assume that when I stopped treatment that I would be back to my original self.  Last time I stopped treatment, even though I felt these post treatment sides, I was feeling very hyper/manic like and everybody was liking me to be like that.  So, they assumed that I would be like that this time.  Well, I'm not.  I'm dragging my butt, can't sleep, feel awful, etc., etc. and then, they act like 'well you're doing so well, you're off that terrible treatment, etc., etc.'   when I'm sitting here feeling like ****!  I'm so frustrated by everything.

Susan

[jmjm530]

They recommend you continue to use barrier birth control for six months after treatment because of the riba, so that's one measure. Personally, I felt most of that riba "feeling" left my body just recently, around the 4 month mark, but that's of course subjective. That doesn't mean post-tx side effects necessarily end at that point but just more or less when the drugs leave the system.

-- Jim

[mikesimon]

I wish you the best luck. Mike

[oldnan]

Thanks Mike....I'm keeping my fingers crossed!! Right now I don't feel too bad...just constant fatigue and joint pain, (as if that's not enough, right) Anyway, hope you're doing well. Where are you in tx?..if you don't mind me asking...

[mikesimon]

I have been SVR for the last 2 years. My anti-rejection dose was reduced in April and my enzymes started to elevate. Biopsy showed 30 IU/ml in the serum collected with the tissue sample. I started half dose Pegasys and 200 mg. ribavirin and increased anti-rejection dose a month ago. I am still undetectable in my serum and have been since 2003 but my surgeon said that when my immune system got stimulated it started attacking the little bit of virus that was in my liver (and doing no harm before the dose reduction) and thus the elevated enzymes. They have started to come down at last. Don't you wish you hadn't asked? I hope you reach SVR and get this stuff behind you. Good luck. Mike

[oldnan]

Just a quick hello to chevy, I used to be nannieg here but had to change the name. How are you??? I'm off of tx but had a relapse and am waiting to see another doctor....my old one would not retreat me because he said my liver was too bad....proves what he doesn't know about this virus cause I know you CAN be retreated and I'm looking into that. Wish me luck.....

[returntosender]

I am in my fifth week post 48 week tx.  I thought I was ok early on but think that I just started to really feel better this week.  Hard to tell because I am not sure what "better" will turn out to be.  I know I am happy to be done but this week came a feeling of wellness that I havent had in a long time.  

I have a variety of lingering problems but they seem to be improving.  I just got back from a week at the beach and after planning and packing I drove 10 hours each way - and with my wife and kids swam, sunned, walked, golfed, played, shopped, stuffed myself and was generally cheerful, happy, involved, and motivated.  Didnt yell or scold anyone more than they deserved.

Best time I have had in as long as I can remember.  I dont know what future will hold but I am grateful for this wonderful week where my kids had a chance to see what their dad is really like.  I used to tell them I wasnt always sick and tired and in a bad mood.  I dont think they believed me.  They do now.  

Interferon - $150,000
Riba - $50,000
Blood test and doctors visits - $5000
Kids meeting their real dad - priceless.

[Mister beagle bailey]

I to am 3 weeks post tx and it's a slow recovery but I am getting better.  Hope you start to feel better soon, it's like Jim said.

Jim, you said that the riba is still in force 3 weeks post tx.  How long does it take for the riba to leave the body?

Beagle

[GoofyDad]

Hey Fres. Nice to hear from you. Super congrats on finishing! I was shakey and jittery for a month or so coming off the meds. Give it some time....

Nan - Send me an emaiml if you still have my addy.

[Algernon]

RETURN:  That was inspirational.  I'm about to take my kids to San Francisco during my 5th week post TX.  I'm completely psyched.  I feel like I'm getting to know my kids (and them to know me) all over again.

BEAGLE:  I went for my 4 week post TX PCR today and the office was closed for the holiday weekend!  I'm leaving town for the week so I'll get my first post TX PCR next week.  Will you be on that schedule too?  Eeek.

[oldnan]

I know what you mean.....when I finished tx. I too, went through hell coming off the meds but it wasn't long before I was feeling better. Like Jim said, it takes time to leave your system but if you find that you're having a real hard time talk to your Doc...he may be able to help you. Hope you are feeling better soon.

[Algernon]

I'm only one week further along than you are.  I only had 24 weeks of TX and I felt pretty horrible for at least 2 afterward but slow progress has occurred.  

Remember what Jim says about how long it takes for these drugs to clear the body.  And it took 48 weeks for you to feel as bad as you felt by the end of TX.  It just takes some time to start feeling better.

I know that you are sick of water, but I still need to drink more than the normal amount or I start feeling really bad.  

I've thought of pregnancy and childbirth a lot of times since I've been on TX.  I sure didn't feel "back to normal" the day after my baby was born.  My husband (an athlete) told me that for every six weeks an athlete is "off" due to injury, he/she can expect it take one week of working out to recover what was lost during that time.  Somehow that little formula helped me.  48 weeks of TX means at least 8 weeks to recover (if you can take good care of yourself).  Hang in there.  Solidarity, Algie

[SJL]

I too have gone through and I am still going through post meds. I have had 2 rds. of therapy & attempted maintainence Pegasys, to no avail. I have been left with Neuropathy, which is no fun. I take physical therapy at least once a week, & I am now seeing a Psychologist. I have only seen him once last week but I have an appt. this Thurs. I feel that having somewhat of an outsider to the total therapy & feelings we have encountered is going to be very therapuetic. Did your Doctor leave you on anti-depressants? Don't let yourself get really down, as I did, before you seek help. I know that you will feel better soon, but I know that seems a long way off. Good Luck!

[Forseegood]

I hope youre doc can put you on some good anti-anxiety meds like Ativan or Xanax, at least for the time being until you feel better.... me thinks that that the meds are overblowing your system as they are leaving...simply put "detox"....  also maybe get a bood called "The Feeling Good Book" it's helped me and so many others I know get in perspective when emotions take over and get you out of perspective...hope you feel better soon and I'm sure you will...

[jmjm530]

Sorry you're not feeling well. I recently read something about post-tx psychiatric issues but can't put my finger on it. A lot of folks have lingering symptons of one kind or another, but at only three weeks post treatment, probably too early to draw any conclusions. At that point, the interferon is just clearing your system and the riba is still there in force. Hope you feel better soon.

-- Jim