How's everyone doing?

[rifleman]

Just wondering how everyone who started tx recently is doing.  Some folks have been absent.  Maybe they are dealing with sx??  I take shot # 6 this Friday and have survived so far, except for feeling like **** on sundays and mondays.  Only sides are general malaise and lack of motivation to do stuff.  I catch my second wind on Weds or Thurs, but then comes shot night.
I had my 4 week PCR last Fri and am awaiting the results.  If I am clear, then I am halfway thru tx.  I have the option to do 12 weeks if clear at 4 weeks, so pray for me.  I am (was?) geno 2b, vl 1.3 mil, minimal liver damage.
I am especially wondering what happened to Robbetz.  He was all gung-ho and I haven't seen a post from him in over a month.
DJL

[cbee]

Just a word of caution.  I would be leary of doing only 12 weeks of treatment.  There have not been many studies at all in the U.S. which support doing 12, 14 or 16 weeks.  I believe there is an earlier post where someone (a 2 also) just relapsed in a 16 weeks trial.  As a 2 also, I have spoken and seen some of the "best" hepatologists around.  I also live in Los Angeles where I've treated at both Cedars and UCLA.  The consensus is that this virus is getting smart and mutating (like what happened with HIV) and is getting more difficult to "cure."  The doctors are recommending longer treatments - not shorter ones.  Believe me, I would have loved to stop sooner.  Tonight I'm doing my last shot (28/28).  I did an extra 4 weeks and I'm not even sure that is enough.  The doctors recommended doing more because I had a very sensitive test which showed a minute amount of virus at 12 weeks.  I know Artgal was going to do 16 weeks but after doing her own extensive research is now going to do the full 24.  If I were you I would rethink the 12 week program.  I don't say that lightly because I was incapacitated and couldn't even work during these last few months.  But I figured I started this I might as well at least do the standard treatment.  

Just my 2 cents.  Good luck.
-cbee

[cuteus]

when I complained of chest pains they lowered the riba from 1000 to 800 and gave me Procrit 40,000mg a wk.  I know of no supplements that will keep the hgb from dropping. Califia mentioned something but it is temporary and the riba gets the upperhand again.  anytime my hgb dropped below 11, I could tell. I kept telling them that there is familial hx of cardiac problems so when I mentioned the pains, they intervened.  Anemia can cause cardiac problems if allowed to persist.

[dendel]

Thank you for your input.  I will ask Dr about Procrit this Mon.
Its will be three months this Tues on tx.  Thank God I don't
have pain. Just achy here and there.  Again thanks.

[1fairygirl]

Thank you for the headsup.  I've been getting copies of all my labs but I don't always know when to worrry or not.  You gave me an idea of when to become concerned.
Thanks again.  Smiles, Sue

[nyhepc]

glad to hear you're doing fine.  was wondering about you...congrats on your PCR results

[rearfang]

I will be doing #11 (should be 12) of 48 tomorrow. I have been doing mostly fine other than a 10 day period last month when I felt like doggy doo-doo due to an infection of some sort (it was never dx, but w/in 36 hours of starting antibiotics, it went away, so it must have benn a bacterial thing). I missed one shot of peg because the gastro wouldn't let me do it w/ a high fever. Just got back my first pcr (done at 9 weeks) and it came back undetectable!
Lauren

[1fairygirl]

Cuteus,
In afterthought, I have a couple of questions for you.
What did they do when you were having trouble and your count was so low?  Did you have to reduce your ribavirin?  Do you know of anything that would help to prevent this, any nutritional things to do?  When in your tx did this happen?  How are you doing now?
I hope all is well.  Thanks for your help.
Smiles, Sue

[dendel]

Thank you for your answer. I will ask about Procrit this Monday.
Thank God I have no real pain.  Just achy. I think I am doing
pretty good considering the other people in this forum. Well I
will be three months on tx this Tues. Thanks again  Adele

[nyhepc]

if the variety of sides has anything to do with the chances of clearing, then i must be clear at week 3!!!!!!  hurrah!!  LOL.let's see....fevers almost daily (highest 101),fatigue, lack of energy, cough, down 8 lbs,muscle soreness, riba rash,headaches. the fevers don't start til i get home from work, so they're managable. haven't missed a day of work yet, altho i did change my schedule yesterday. i work with 40 alzheimer's pts, and 5 days in a row was just too much. now will do 3 on, 1 off, 2 on,1 off. will work much better me thinks.
as others have said...its hard but doable.
the march continues...

[Forseegood]

Hi, about to start, yikes, gotta just keep telling myself that everyone is different, I won't know till I try. Anyway, of course many are just theorizing on some of these issues, including the docs and researchers, but I too have heard about a few docs saying that they think the people who are having sides, considerable sides as well, are showing a good immune response with the drugs and are more likely to clear. Of course I know little about this, I just wanted to tell you that I have heard the same thing. And of course there will be people who do not fit any one theory.

[IwillBeatHCV]

I did my 6th shot this past Monday. My 4 week VL was down to 178,000 from 2.7 million. So far everything is ok. I feel a little fatigued at time but overall doing ok. Good to hear from everyone.

[mauka]

I'll be doing my 8th shot tomorrow evening and I must say that
I ain't doing bad at all!

I feel a little fatigue and sometimes It's hard to fall asleep early.....some Tylenol PM
took care of that. Overall not as bas as I was expecting!!!!!

[cuteus]

you have been taking riba for three wks now, you know that it is destroying red cells continuoulsy, right? and the loss of oxygen from their loss, is going to make you feel tired. unfortunately, it might get worse, so keep the upperhand. keep copies of your blood work, my PA kept saying evrything "looks good" until it got to 10.2 and I complained of chest pains. I then got copies of my blood work and found that my hgb had been dipping all the time she said I was fine. Stay on top.

[friole]

I am on Pegysys and Copegysys (Ribaviron -1200mg).  I understand the sides are slighter than the Pegintron but I don't know  I am still waiting for the kick -- but I can feel subtle changes in my body as it adjusts to the meds.

[BostonGirl]

Been on Procrit since week # 3. Yes, it makes a big difference. It's not weakness per say that is my main complaint. It's the neuro stuff that is getting scarey. I am having serious balance issues, falling, ect. Lots & lots of neuropathy, severe vertigo. I'm also having visual disburances, very weird visual stuff. I have already been to the optho, had my eyes checked and retinas are fine.

But I know something is attacking central nervous system and I am hoping it's not interferon induced. I will be seeing a neurologist soon to get some answers.

Interesting thought > I had many of these sx several years ago, was checked for MS and told I do not have it. I am wondering if the interferon is triggering it now? This bug juice really does a number on us, doesn't it?

If I am not clear by week #24 I think I am stopping. It's getting to be too much.

(((( Sue ))))))

[rifleman]

I felt the same way the Monday after my first shot of pegintron.  The first shot was like getting hit by a truck.  I think the Riba gets to you after it has 3 weeks or so to settle in.  I don't have any immediate reactions to the shots now, but I have gotten fevers a day or 2 later that are so intense you could fry an egg on me.  That type of thing screws up your equilibrium and makes you nauseous.  The 4th week was just a bad week in general.  I'm just hoping that 4 week pcr comes back undetectable.
Are you on pegintron or pegasys?  I don;t know about pegasys, but the pegintron sure seems toxic enough to kill anything.
DJL

[snook_man]

Glad to see you holding on. Told you that it would be a memorable ride to say the least. I see you said that you are going to cut tx short. Those studies are very new, and have not been studied in great numbers. You have had this virus for ALONG time, and I would stick it out as long as you can. It will get better.

I'm on week 39. Friday will be shot 40.. Damn, I can almost see the finishline!! I have been very lucky as far as sx's. They where almost nonexistant until week 28 or so, then got hit hard with anxiety. Now I have been flying again for the past few weeks. Have experienced no sx's at all, other than piercing headache usually saturdays that comes and goes. The pain is severe, and quick. But other than that, all is well and I'm also on the fatty chocolate diet. But mine consists of cookies, ice cream, and can't leave out the pizza!!! Gained back 10lbs over the past few weeks.Still working fulltime, and have only missed afew days since the start of tx. It can be done!!

[cuteus]

sorry for caps, had them locked, I can see how scary that would be, permanent nerve damage, you had the cryo to contend with and who knows what that in itself did to your system that has made it so prone to neuropathy. It does seem as if the new drugs are also including interferon in the cocktail, so I would not know what the answers are.
best to you on the PCR.

[artgal]

We should talk. I am using the same clinic as you. I have found in many areas relating to this tx, Kilby and Andy are not as up to speed as they need to be. (Very kind, nice people but I really need more than that....) I also was very intrigued with the possibility of cutting my tx short. (Find my posts -- lots of comments from knowledgeable people on this issue.) I cleared at 4 weeks with the Quest lab test that goes to <50. When I last saw Kilby, I insisted on using the most sensitive test out there -- the Labcorp which goes to <2. He didn't even know about it! I did that one at 8 weeks and was <2. I have a good friend that had a viral load in the single digits -- those other tests would have showed her as undetectable. This could make a huge difference in someone's treatment plan.
I have received a second opinion from a Hep C guru at Brown University Medical school -- unless the sides make continuing tx impossible, the word is go the full 24. If you relapse (and some studies are showing 2's doing this with the less than standard protocol), you will need to retreat 24 weeks. All of the studies for 2's and 3's have been done with Europeans -- that might make a difference.
It's almost unbelieveable that I am advocating the full 24 weeks. I hate this tx, I've had just about every possible side effect but I am becoming more and more convinced the 24 weeks is the way to go. I have decided if any part of my (until now healthy) body begins to show negative consequences (thyroid, retina, etc.) I will stop the tx immediately and hope for the best. I do #13 tonight.

[cuteus]

you did notice the word DRAG, right? everyday I wanted to curl up in bed and remain immobile, but on my way to the bathroom on that morning must do trip, I knew I could not waste a sick day, so I gulped that vicoprofen and on I went. Procrit helped a lot and the pain killers, main reason I was able to finish, and or FEAR of relapse. terror can motivate big time.

[cougareyes]

I am on pegasys 180mcg and 1200ml copegus, and yes I am in stage 3. I do believe it's working and had a very possitive outlook before starting tx. I never imagined it could be like this, but it's not only handling the sx I'm concerned about. I'm also  concerned of how financially I can continue on tx if I can't return to work, and the possibility of losing my health insurance.
To all those out there doing well, I'm happy for you; for those stuggling I hope you find ways to cope.
thanks for listening,

[stc1993]

I sent Robbertz an email to see what's up. I was wondering myself.  he contacted me thru the pegasus web site right before he started tx. I told him about this site.

Monte

[ASmile4U]

Rifleman:  I was just wondering where you've been lately, you haven't posted in a while either.  Glad things are going ok for you!  Oreo pudding is pretty good too with that morning riba!  :)

Bostongirl:  Thought I'd share with you what my doctor has decided to do since I did not meet the 2 log drop at 12 weeks.  Right or Wrong...who knows...all these doc's have different opinions...you just gotta go with what you think is best.  I am a 1, VL pre tx 1.9, 44,000 at 12 weeks, was on PegIntron/Riba.  Rather disappointing. He said regardless of how I look at it, I am a non-responder.  He wouldn't give % of SVR if I was to continue same tx, but I believe it was rather low, not the 50-50 that we initially started with. But ya know, the way I look at it is, 20 is better than 0. At 16 weeks, doc stopped tx and has suggested I start Infergen/Riba within the next 4-6 weeks. I've been doing a little research with the help of this forum and have found 4 people that have or are currently tx with Infergen.  Looks good...also, my doc said I am looking at 41-61% again once I start the Infergen.  So, what does one do?  Doc said sx aren't as bad as Peg tx either...I still need a little convincing of that statement...But I think I am going to give it a try once summer's over...what have I got to lose?  I do feel pretty good now that I'm off tx. Going to enjoy what little is left of the summer. I hope all goes well with you.  :)

[snook_man]

Hey, how you feeling? Are you drinking enough fluids? Dehydration can cause alot of extra sx's. Make sure that you are getting a minimum of half your body weight in fluid ozs. a day.

Also, it sounds to me as though you are mentally beating yourself up. You have to truely believe that tx will get better, and that YOU WILL obtain that SVR!!! Positive attitude, achieves POSITIVE results!

I am on my 2nd attempt at tx. My first, lasted only one week before being pulled off the meds. I suffered from the same sort of feelings you are going through right now, and lost 10lbs in 6 days. I actually could not stop vommiting, and meds did nothing for me. I stopped tx, and waited about 5 or 6 months to mentally prepare myself, then tried again. I am now on week 39, and still work fulltime. I have to tell you, alot of the sx's and the way the meds eefect you has to do with YOUR mindset and confidence in YOUR ability to successfully make it through. If you think you can not do it, you won't.

Check out "out Of Bounds" over at Delphi http://forums.delphiforums.com/hepcotb/start
A positive attitude, WILL achieve positive results!!