Treatment Finished - what next ?

[NikoS]

I have been trying to post on this forum since I finished treatment at then end of July... Had almost given up.

My first results 6wks post tx are negative, alt 16, but have been really struggling with feeling depressed & just plain tired.

Had expected to feel fantastic after a week, but it's just been a battle. Feel like my moods are very up & down. Has anyone else experienced this post treatment

Spoke with Doc & he said I should be feeling great ? Has anyone else had this ?

[v eggie dip]

holy cow you did 88 weeks of tx....are you svr now?

[v eggie dip]

wow, I really feel for you...But thank God you at least got some reversal of damage from all your tx...What's the next step for you?  Do you mind if I ask how long you had it?

Beth

[NikoS]

good lord 88 weeks, that is a long time... you're super human... physical I can deal with but at times mentally I've felt like I was going nuts...

Was easier when I was on treatment cause at least I had a reason & a focus... I wasn't expecting depression to continue post tx.

[Pirategold]

I'm new here (a couple of days) but haven't I read that one of the side effects (sx?) involve the thyroid?  And don't thyroid issues cause depression and tireness?   Just a thought you might explore.

On one of the other threads regarding joint pain there are suggestions to use SAM-e which is supposed to also help with mood issues.  That might be another avenue for you to explore.

Pirategold

[GoofyDad]

Thanks for posting those articles. Back in June a NP HVC specialist mentioned to me the new ability to grow HVC in "a petri dish" - I know it's more than that - as described in the 3rd article. She viewed it as a really big development. Its not clear to me whether it lends itself more to developing a treatment or a vaccine? Good news anyway you look at it, though come to think of it the creation of a vaccine could be a dampener on the search for new cures. Still, clearly it's  needed.

[Califia]

NICO:  I hear you.   If this is any consolation, you are most  definitely not alone.   It has been a roller coaster both physically and emotionally for me since I finished 60 weeks of treatment,  mostly due to my current vulnerability to every little bug in circulation.  Or maybe it's  just the same "flu" that keeps resurfacing.   Or the effects of withdrawal.  Who the hecks knows?  It's frustrating, discouraging and all the rest.    But when I have intervals of wellness,  the amount of energy I feel is just spectacular.  And then it's ten steps back  again.   Like you, I am also negative (by a 4-week PCR).    I bet it's just battle fatigue we're experiencing, just too darn tired to truly register or celebrate our good results.  So let's just keep our fingers crossed, and the very best of luck to you.

REV:  How're you doing?   Now I undersand what you meant about actually missing interferon.   It may have been a wintry wonderland, but a wonderland all the same.

                   RECENT POST-TX'ers PLEASE CHECK IN!

[NikoS]

Califia - thank so much, I have been down for 2 weeks with a bad cold to, but just hearing someone else is feeling this way makes me feel better...
all I've heard is that I should be feeling fantastic, happy, enlivened etc & it's just made me feel like a LOSER. Anyway all the best - I am grateful that people took the time to respond.

[doll face]

I am almost one year post tx and still feel tired and depressed even though I achieved SVR. Mine is due to hypotyroidism as a direct result of the meds for hep c. I would definatley get yours checked. I felt great after my first round of tx within 2-3 weeks but can't seem to beat it this time around. I go in for lab work this morning. The sides for hypo seem worse than when I was going through tx. Hope you figure out what is wrong soon, and are able to fix it. We have been through enough without having to feel this way afterwards. Good luck

[jevs2]

Hi, I'm 19 months post tx (successful).
It took a good 6 months for me to recover from all those nasty chemicals.
Try and eat healthy, keep drinking your water, get plenty of rest and be patient.
Best wishes
Joanna

[v eggie dip]

I am hypothyroid also...I take Synthroid and it works like a charm, but it took 4 months of paying around with the dose before they got it right...

[scruffy]

Did you take AD's before,during or after tx? I did'nt but am now struggling a bit with depression and have been since tx-17 mo post tx. I see the Doc this week and may finally be open to an AD. I am not clear of virus for those who don't know and depression may be due to hcv.I fear that the tx itself may have increased my susceptability to depression but that the hcv started it. I was very moody for years previous to tx. Or, of course, it could be genetics(NOT). Frank

[mikesimon]

I stopped tx in June 2004 after 73 weeks. I started to feel really well by the end of the year. So to celebrate I bought a new bike. I was just starting to feel great and then I wrecked my bike May 8th - Mother's Day - and that was it for feeling good. I suffered a badly broken leg, broken color bone and pretty severe head trauma. But I think had I not wrecked I'd be feeling really great by now. It did take several months off of tx before I started feeling better. But I had been on tx in one form or another since July 2001 with a few months off here and there so I'm probably not a very good judge. I sure hope you start feeling better and better and that's what I expect. Just hang in there and stay clear. Mike

[Califia]

Mike, May you be inscribed for a pain-free, trouble-free year, with all parts in working order and energy up the wazoo!    Yep, we'll all get there, but maybe not on motorcycles.  Really nice to hear from you, and keep that grin on your face.

For the record, y'all,  and Scruff y'all,  I'm still on 250 mg of Levothroid (thyroid replacement hormone) and continuing the moderate dose of AD I started for tx.  Decided not to taper until the other nasty drugs have washed out of my system.   I'm afraid the ill effects are just combo residuals.  But by all means, everyone, have your thyroid checked.  Any abnormalities affect the whole system in a major way.

[cuteus]

IT seems everytime I go on a short hiatus, I miss somebody's good news!
4 wk negative PCR, it is LOOKING GOOD!! VERY GOOD!
OK, pin me down to it....(whisper) YOU ARE SVR!
60 wks and a couple of stiches and broken bones later, you are hcv free!

don't shush me. I have studies to back this up! ok, maybe just one...
but it was in the AALD(sp?) conference last year!

[Califia]

Shush you?   Sheesh!    I  _know_ you're right, but I'm still waiting for that large Germanic lady to let loose with her aria.   This was my 1st announcement, by the way.   Talk about cautiously optimistic,  or chronically paranoid....but still, this first PCR may be predictive, but it's  not yet definitive.   But thanks, my sistah.   I'd be honored to join your club.

[Califia]

Forgot to type your name in the comment to box.  Previous msg is to you.

[snook_man]

I took my last shot on Sept. 16th, so I'm a few weeks post tx.. Hardest thing for me is the mental block!!! Like before tx, I could do mathmatical equations right off the top of my head.. These days, I don't have enough fingers to count with?
But energy wise, I feel pretty good. Back aches like ALL heck, but overall I feel pretty good. No depression, knock on wood, but I am taking 37.5 mg of Effexor Xr daily. That is half dose, as I have been gradually tapering off. Weight is coming back strong, as I'm up to 165lbs already.. Seems I gave up my Peg addiction for a Chocolate ice cream addiction. All I have to say is, Dove, Unconditional Chocolate!!!! I'm having daily withdrawals if I don't get it!!
HIGHLY RECOMMENDED!!!

All the ole' timers know that I have NEVER obtained "normal" ALT levels during the course of my tx. They have bounced around, and never droped below 60. Well, at week 48 they where 51.. Well within the normal limits, and my AST was down to 30..
Doc will not order a Heptimax till 3 months post, as I have had 3 or 4 in the past few months. I got busted for writing them in on my lab requests. Guess insurance doesn't like paying for them $400 tests every month!! LOL.
But I am having full CBC counts at the end of the month. I should be able to tell by ALT levels whether or not the virus is back or not.
I got my fingers crossed!!!
Fibrosacn results showed little fibrosis, level 1 at most.. Schiff wants another CT scan done ASAP, and another biopsy within a year. I am hoping the Fibroscan results are accurate, and either the Peg reversed my damage, or original biopsy was staged wrong..
From what I've found on the net, Fibroscan is VERY accurate.. More accurate than Fibrotests, or ANY other nonivasive procedure.
All I can do is throw the dice and hope for the best!! I gave it another try, and made it across the finshline with 100% compliance, and no dose reductions. If Dr's are right, and most research articles are correct, my chances of SVR are pretty favorable.
Remember, I'm driving the SVR bus ladies!!!!!!!

[v eggie dip]

you went from a stage 3 to a 1 in 48 weeks????

[snook_man]

I can not say that.. i can say that the Fibroscan test revealed very little fibrosis.. The only true test, or proof so too speak, will be on my next biopsy later this year..The Fibroscan is not yet approved in the US either..

What I can say, is that my Fibroscan results read in the 4's.. In one spot, it registered 5.2.. Every study I have read, including the one presented recently out of France, states that in ALL studies, the lowest reading recorded was a 2.. And the range of patients was from zero fibrosis, to stage 4..

[Tallblonde]

Cuteus and I finally agree on something! :)

I, too, am very confident that you've made it to SVR.

Things are certainly looking good for you, even if your body hasn't gotten the memo yet.  I'm sorry you're still feeling under the weather.  But that's temporary.  You'll bounce back soon.  I still believe that 2006 is going to be the best year you've had in a decade.

Best to you,
Susan

[Califia]

TB:   Aw, Susan, you sweetheart, thanks so very much.   (I kinda sorta virtually share your assessment of things.)    

Snookster:  Oh boy, this is going to be interesting.  After what we've all been through, we're subjected to a one-handed driver of the SVR bus who has to save his other hand for counting???!!! !!   Well, darlin', you can't compute and I can't spell anymore.  What a winning team.   You're wailing on chocolate ice cream and I'm devouring red meat like the poster girl for Burger King.  (Well, it's free range & garbage-free.   Gotta have _some_ integrity about it.)    At any rate,  while we still have the crystal ball out on the table, I'll make my own prediction:  I'm about  99.999% certain you've gotten over.   Believe it.

Rev:  I'm so glad you're posting again.  I, uh, actually missed you.  A lot.

[NikoS]

Thanks again to all, I am feeling much more normal after reading everyone's comments. Will get thyroid checked out...

Been avoiding any more blood work as veins none existent even with butterfly, that's a decade of serious drug addiction for you...

Anyway I guess life is coming full circle for me in many ways now, 9 years drug free, and now hep free - it's kinda crazy... So I am just going to try to focus on the positive... and get more sleep.

Best wishes to all, this site is an absolute blessing !
Nik

[mikesimon]

Now that you popped in it's like a class reunion. It's nice to see you too Chevy - real nice. Mike

[Califia]

SMILE!

p.s.   There IS life after treatment,  y'all.   Keep hope alive.

[gr8faith]

Wow, been a while. Great to see all the old timers and the new ones too.  I finished tx in June and will get my 6mo pcr in Dec.

Took a while but I have been doing great.  Energy is back, foggy head is gone(for the most part)  Been getting projects around the house going and enjoying everything so much more.

[layla]

Why not! Is this a party I might have missed? It's good to check in and see this post.
Congrats Califia! That is great news!
I hate to say this but it was a year before I felt ok after the tx. I am still dealing with thyroid but I believe that eventually will get settled. It is very hard to get to the right dose for many people. If you have thyroid questions check out medhelp thyroid forum. There is an endocrinologist there who is very sharp. I did 18 months full dose tx and did not even notice I was off tx for over a month. In the beginning I did not even have sx for months but my thyroid got it and all went to sh!t. I am SVR but still dealing with the thyroid problems. Many people lose their thyroid after tx so it's good to keep an eye on it then too.
A big hello to all the "old timers". I wish you all the best! LL

[Califia]

Wonderful to hear from you both!   Your tx results are so very encouraging and believe me, I'm holding fast to your positive examples .

Layla, the thyroid thing is such a pain in the neck (lame joke, I know) and my experience has been that it will need constant adjustment over the years--but heck, that was with an active virus gumming up the works.   Maybe Hashimoto's will be easier to manage when you're SVR--an interesting thing to speculate about.    I do know that as soon as I stopped tx I started to lose all the weight I had put on during treatment  (grrrrrr) by simply breathing and drinking water.  Currently my TSH is lower than it ever has been historically, a definite reason to celebrate.   I understand what you're saying about needing a full year to recover.  I've heard the same from many folks, especially those who did extended treatment.   But onward and upward--at least there's one less life crisis to contend with.   As dear Ms. Stewart is so fond of saying, it's a _good_thing.  I wish you all the best.

Chev, so you're svelte again!   I say look out, world--those y chromosone types don't have a chance.  (: