Question about life during wks 18 thru 48....

[carolhab]

Hi all - I am wk 18/48 in a blinded clinical trial using either Ribivirin or Viramidine...  I will not know my viral load until wk 24 as part of the protocol of the study.  The good news so far is that my liver enzymes have normalized, my while my HGB has dropped from 14.5 to 12.1 over the last 18 wks (causing some shortness of breath and fatigue), it is still within range, and I feel that is a good sign because I have tended to go anemic in the past, mostly due to diet I think.
I am also getting my thyroid checked again, and waiting to hear back about that.
  There is a good chance I am on the Viramidine (the ratio is 2/3 of us are on Viramidine, 1/3 on Ribivirin).  This is hopeful news for us all in advancing the tx a little in that Viramidine (which is a prodrug of Ribivirin that targets the liver more directly) will cause less anemia in tx. My study is over in Nov...
More info:
www.hcvadvocate.org/news/reports/EASL_2004/Easl-Pegasys.htm

But, the sides I have are all the same... My question relates to what the rest of my weeks on this tx will be like, and whether I can gauge that by how the first 18 weeks have been. I feel myself getting slowly worse as far as brain fog, overall sickness etc. Has anyone stablized or felt better going through the middle of tx? I am considering a job change (should I hold off until next year and tx is over?)  I can plug away at my current work and cut down workload a bit..... In general, I feel my decision-making abilities are shaky, and maybe I should hold off on big changes right now.... but, this might be a good job.      

[hepcgetlost]

Hey sistahs, thanks for the kind words and the encouragement. And I agree with carolhab...you women rock!!!!!  I don't know what I'd do w/o the common sense, wisdom, humor, and cameraderie I have found on this site. I don't visit as often as I'd like, but when I do, it's always a pick-me-up.

For the moment my madwoman dance is out of the question...I finally crashed yesterday and am moving far more cautiously today. These last few weeks are treating me relatively well, except for some major digestive and gastrointestinal problems. Finding it hard to eat much at all. Sorry to move this conversation to the state of my bowel movements, but that is what preoccupies me much of the time right now. They are a horror and the aftermath is always quite painful. I thought I had run the gamut of sx in 68 weeks, but obviously there's always a new surprise around the bend. I'll spare you guys the gory details for the moment. I don't think my current problems are necessarily related to treatment, otherwise I'd bare all...(groan) sorry, no pun intended.

Hey, I really love you all and everyone here. SVR for all. Big hug, Judi

[hepcgetlost]

Hey Chevy,
You say it all so well. I so appreciate and resonate with your pithy comments ("There is an intense clarity and matter-of-factness that the combo tx 'bestows'). I can't believe I'm saying this, but in so many ways, this whole experience has been a gift...I've changed 180 degrees in exactly the way you describe. I don't carry baggage that I don't need anymore and I had a lot of it for many many years. All in all, I travel very light now, and it's liberating as hell. It's so clear what and who are worth my time and energy and what and who are not. And it's all very matter of fact indeed.

I haven't posted much lately, although I have checked in to see how everyone is. I took injection #68 this morning and it has gotten me so wired I can't sleep and I can't stop moving and I know I'm going to crash sooner or later, but I can't seem to stop cleaning, cooking, gardening and moving around like a madwoman. These last few weeks I seem to either do that or lie around staring at nothing in particular and wanting absolute quiet. It's all okay, because I ONLY HAVE FOUR MORE SHOTS TO GO. My last shot is on the same day my latest (first biological) grandchild is due. I can't believe I've made it this far. Layla, Cuteus and anyone else who's reading this that I haven't talked to in awhile, please know I think of all of you a lot and can't wait to be where you are...4 more weeks and I'll be done. What a crazy ride it's turned out to be. Love, peace. Judi :-)

[Califia]

Judi, what an incredible trooper you are.  You've shown such courage and tenacity in this fight--a real inspiration to us all as you close in on the finish line.   And a big Mazel Tov on your new grandchild.  It's wonderful to see the life force triumphing....

[carolhab]

you women absolutely rock!!!!!!!.....

[scruffy]

Oh,and as far as feeling alone and weird-you ain't alone and weird just means you're even LESS alone! LOL your friend, frank

[Califia]

Yep, you got it...California was actually named by the Spanish after the Amazon queen Califia, the heroine of a 16th-century romance.  They thought they had discovered her magical island when they first arrived here.  That should probably explain a thing or two. :)  

Today it 's nice and overcast & getting ready to rain again.....the wildflowers are absolutely exploding.   Cheers!

[cuteus]

it pretty much stabilized to having the same crappy feeling for the rest of tx after the 5 month mark, like Susan said, you are tired of the **** and want it over, once the 48 wk mark approaches, fear takes over, and you might want to continue with the security blanket syndrome of the meds, I was so afraid of relapse I forced myself to extend.

Pepman: if you did not clear until the 24 wk, will they extend the tx for you? or can you do it on your own? the concensus is to go 36 or more wks beyond the first negative pcr.  I was not clear at the 12 wk mark either, so  I pushed for an extension, I did have to argue a few times with the  PA.

best to you both

[Micro2]

Man!! I just wrote you a real nice long response and it got lost when I tried to post it. Oh well, I will try again with a short version. I am also 10 months post. I have many lingering sides. Extreme fatigue, mental fog, memory trouble, depression, numbness and tingling, lots of body pain, almost constant hip and leg pain. Biopsy 5 yrs ago...1b stg 1 grd 1. Last biopsy 1 wk ago..I will post results when I get them. 54 wks combo, 4 months mono, 4 months increased combo. Tx stopped due to 7.7 hemoglobin. Could not be resolved even w/procrit. Want to work but can't. Trying very hard to rebuild physically but not really getting anywhere. I am learning not to push/crash myself. This really sucks because I actually have job offer and cannot take it. 2 of my docs have highly recommended using provigil which is a central nervous stimulant. I have been using a very low dose for several months now. Its keeps me from staying in bed or staying still all day. Its kind a like a big cup of coffee. I still have the sides but I am more alert and fight the fatigue. Caution! There is no long term use info on this drug yet but it is fast becoming widley accepted. This is for quality of life while waiting for a new hep med. I am scheduled to see a rheumatologist and possibly a neurologist. I visit here daily but post rarley. I do not wish to give newbies false hope! I know many who have done well on tx. Do not give up!! BTW I almost cleared the virus but when tx stopped or slowed...it zoomed back!!! Life could certainly be worse. I have been pushing my docs to pay attention to the growing info on post tx issues. I felt alone and wierd at first but I know that I am not!!
Michael

[layla]

I did not clear at 3 months either so I did 18 months of tx and did make SVR. LL

[scruffy]

Thanks Michael, I appreciate the response. After all you've tried those sides really are the pits. I'm not bad energy wise and some pre-tx achey joints come back sometimes but that never was a problem just an annoyance. The occasional depression(emphasis on occasional) is definitely a tx side and that's why I keep expecting it to not come back and get let down when it does. Of course there are two answers.Take an antidepressant or wait and hope it goes away eventually.My posting was partly to hear from post-tx who may have experienced this and find out whether it resolved eventually on its own. Anyway Michael, thanks for the response and hang in there and I will too. frank

[Docsgold]

I agree with Rev.  You are almost halfway there, just reaching that "countdown" made me feel much better.  So many times I wondered just how I was going to make it, but I did.  Take it day by day and then get happy when you get halfway.  Good luck!!

Rev,
So very sorry to hear about the AIH.  This **** has really taken it's toll on you (meds and virus).  I am glad you stick around to give advise to us all.  Thank you and I hope for a good tx for you soon.

[carolhab]

Thanks everyone for your responses..
Pepman, I was told that possibly folks on the Viramidine take a little longer to clear, so maybe that's what's happening with you... hope so, and all the best to you!!!! I am pulling for you - but good advice here on whether to extend tx past the 48 wks - I don't know much about that yet, and I think we would have to continue treatment privately if we wanted to do that, and drop out of the study, because we would be breaking protocol, and the study lasts months after tx is over... but, I believe clearing this virus take precedence over the study - and have no problem dropping out if I have a better chance to clear...although financially I don't know how I would do that yet..
I have a better idea on what to expect going forward, I think I knew what you guys would say, but just wanted to confirm it.  I am finally accepting my limitations while on tx, and that it's okay to have to slow down/stop...  pretty darn humbling!!!
also, I for one, appreciate the whole truth, even if it's not good... I think us newbies know this might not work, but want to know the good, the bad and the ugly...

[bon_vivant]

Your Post made PERFECT sence to me... I can whole-heartedly relate... However I must tell you that you hid it very well...

What I didn't know is that you have now been diagnosed with AIH, damn I am so sorry to hear this...

I have heard that the treatment works for 3/4 of the folks, I pray that you will be one of those 3 quarters... Please know that you & your family continue to be in my thoughts & prayers!

V

[scruffy]

Hey! does Califia mean california? Every now and then I have a thought-painful though it is.

I don't recall the numbers. Though my red and white cell counts went low I never needed procrit or neupogen. My physical sides were RELATIVELY mild. Of course fatigue and confusion and inability to think straight are mild sides with this s_ _t. Just spent some time out in the sun and it does wonders for the mood.Thyroid was fine all through tx but I can't help but wonder that some kind of hormonal change ocurred that has'nt corrected itself yet. Thank God I was always a little wacked out normally or I would really have difficulty dealing. Have a fine day and I hope the sun is shining where you are also. frank

[Califia]

Amen to that.   No one who hasn't walked in these weird shoes is in any position to comment or advise, but those who have know the challenges all too well.  In some ways, though, I hope I never change back.   I mean, I have a clarity about boundaries like never before.   No bending over backwards to understand or forgive or accommodate the insensitive or predatory person who is violating my air space....no guilt about self-defense.   Not that I have turned into a raging fiend.   It's just that there is an intense clarity and matter-of-factness that the combo drugs bestow, along with all the famous discomforts.   "Truth serum syndrome"  (TSS)  is not such a bad thing.  (Also known as "Tough Sh*t, Sistah!)

[cuteus]

micro; that must have been a horrible experience to get to a 7 in hgb! that alone could have caused a lot of tissue damage from oxygen deprivation, I wonder if scruffy had bad anemia also.
Makes me wonder how much of a relation post tx tissue damage and enduring anemia for months in tx there is. how can our bodies come unscathed from long term oxygen starvation? our brains die after only 4 minutes, so what is there to be expected from months of O2 starvation?
has anyone on monotherapy experienced the same amount of neurological damage of combo?

[Califia]

I think you're a wonderful guy.

[Califia]

Me again, looks like i can't shut up this morning.  I remember being in pretty bad shape after monotherapy, both physically and emotionally, but I attribute that to an undiagnosed thyroid crash that didn't get treated for several months.  This is when I became such a fan of Traditional Chinese Medicine, by the way.   Regular acupuncture picked me up off the floor and got me functioning again even before I took thyroxine.   There were all kinds of devilish CNS effects which the MD's just shrugged off that the acupuncture somehow cleared up quite effectively.

[cuteus]

don't shut up yet! lol.
I wanted to try acupunture but am scare of the needles, are they brand new or reused? what if i get re infected? I might just buy my own!

[Califia]

Fear not.  Everybody in the trade uses brand new disposable needles that get placed in a Sharps container after use.   And American needling technique is really gentle and painless.   If you get an old school Chinese practitioner you might feel like you got mauled by a tiger, but the effects are also way stronger.   I used to see this wonderful woman from the Shanghai Institute of Traditional Medicine who had a tiny all-pink office with samples of her crocheting and embroidery hanging everywhere....also had a mind like a steel trap, with degrees in physics and  Western medicine.   I used to go staggering out her office and would have to collect myself over a meal and a strong pot of tea before I could brave public transit.   Ah, memories...

[scruffy]

Rev, my problem with AD's is that I was a drug addict for 12 years-I've been sober since 1977. I'm really afraid it will change my thinking TOO much. I'm honestly more afraid of becoming the old Frank and caring about nothing than I am of depression. It seems to lessen in how often it comes so I guess I'll just keep trying to wait it out. That is another reason I'm terrified of re-treating. The chance of more depression and losing the sense of who I really am without drugs in me. I definitely should have extended beyond 48 weeks. I may well have SVR'd. Water under the bridge. It feels good to me to hear your anger which I share often. I wish you did'nt feel it but I sure as hell share it.My best to you and yours, frank

[susan400]

I could answer this encouraging and upbeat, or negative.  On the encouraging side:  You've got a lot less way to go than when you started!!!  On the negative side:  "I'm so sick and tired of this ****, isn't it over with already????!!!!


Susan

[pepman]

Excuse my ignorance about my own condition. What I can tell you is that I didnt't clear at 3 months, but did clear at 6 months.
The nurse clinician gave me some numbers at my last test, they were Hemoglobin 111, WBC 2.42 neutrofils 1.69 and platelets 147.
To be honest I'm not aware of the relative normal values here, not great science, I admit. But I'm feeling more emotionally stable than I was during the early months. I have avoided ADs, feel that my liver has enough meds to metabolize. I take zopiclone (ambien) to get to sleep. Glad to hear from you
Brian

[scruffy]

I felt the sx's from peg-intron/riba were pretty stable at 12-48 weeks. They were unpleasant but you adjust and accept. Unless something heavy happens like your thyroid craps out or blood counts plummet you may just continue as things are now.Course it varies a bit from person to person. frank