Feel free to use this thread for anything

[Magnum]

I know how difficulot it is to get a thread going. So go ahead and use this one...

Magnum

[nauti754]

Quick question, when all of you start treatment, do you start pills and injections at the same time, or the pills 30 days in advance of the shots. I previously stated I am in a trial group, and have started the pills 30 days prior to shots. Is this the norm?

[cuteus]

nauti, I don't think is the norm for non trial people. They seem to start everything the same day.
I hope you find someone you can compare notes with, but it seems you might be the only one in that trial, at this forum, maybe later they will show up.
Are you allowed to talk about the trial protocol? don't they ask you to keep things confidential?
just curious.

[FlGuy]

I look at it as a TX 'week', with the week starting shot nite Fri).  Then the next seven days(Sat - Fri) as riba days.  Following this scheme.  Shot and riba start the same day.  At the end you have a shot followed by 7 days of riba.

[cougareyes]

My understanding was that riba was not effective alone. And it's benefit was to enhance to effectiveness of the interferon. Perhaps they want you to be at a therapeutic level of riba before stating the interferon. I've also read on the pegasys website not to take copegus(riba) alone.   Peace

[jmjm530]

Can you share with us what trial your in? I often thought on a conceptual level that starting riba 2-4 weeks before the first shot would make a lot of sense. Especially in light of recent studies showing how important serum riba levels are to both early and later viral response. Also, what genotype are you? What dose of riba did they put you on? How much do you weigh? Thanks.

-- Jim

[NYgirl]

I'm with FLGuy that's my week as well (Fri - Fri).

As a non-trial I started the Ribas in the morning and the shot at night all on the same day.  I remember calling to ask if the Ribas would make me sick. Wow to be so naive at one point it's almost like we go on Tx Overload. Sometimes I think we know too much and examine EVERYTHING far more than needed...but it's what seems to keep us SANE so it's worth it!

[friole]

I am getting lost on the threads but this is in response to getting the larger syringes with the 1" needle. They gave me those for my first shot.  I was supposed to have the prefilled syringes, but the pharmacist did not know how to read the rx and gave me the vials.  The syringe had a 1" 22 gauge needle.  Like you said -- for a horse!  I got different needles after that.  I think the 1" are for intermuscular shots and are way too long for you.  Consider doing it in two shots if you can't get smaller needles.
frijole

[cuteus]

welcome to the forum, feel free to ask all these wonderful people anything.  One thing that is common here, is the desire to ease someone's burden a little.

[jmjm530]

Yes, riba is not effective alone, however I'm assuming this new study will examine if peg therapy starting with higher initial serum riba levels (by pre-dosing riba by one month) will positively affect EVR and SVR. I think they might be onto something but let's see how the study plays out. Keep in mind that the normal protocol starts riba the same day as the Peg, however maxmium serum riba levels are not reached for 2-4 weeks.

-- Jim

[jmjm530]

So in effect, by pre-dosing, the higher serum riba levels at day one could conceivably have the same effect -- or better -- than using very high initial doses of ribavirin -- without the severe sides -- that have already been shown to be effective at least in the Sweedish Pilot study. All speculation at this point but very exciting, at least to me, the riba obsessive I've been. :)

-- Jim

[NYgirl]

Hang in there buddy - we were all just as shocked in total disbelief as you at one time and we are all doing our best to make it through this rotten thing.

There are a lot of VERY knowledgable people in here who have saved my life.  Helped educate ME so that I could manage my own disease and not rely on blind doctoring.  Watching out for yourself is one of the best things you can do. NOBODY cares more about you than you!

Go to the GI or Hep Doctor, get a good biopsy and find out where you really stand.

Some people have hardly any damage at all - others more advanced.  The biopsy will help you decide to treat or not to treat.

And that IS the question.

Best of luck

[GoofyDad]

Man, that blows. Really sorry - try not to 'dwell' on it 'till you get more info and a confirmation there is in fact a problem. Post soon to let us know what you learn.

Also, when were you tested? At the end of treatment? Then 6 mos out?

Best wishes my friend.

[nauti754]

I am on a viramidine study. I dont know if its Riba, or Viramidine since its a blind study. I am geno 1, I am 185 lbs, and I believe the dose is 1200, 3 pills with the morning and evening meal of whatever it is they are giving me. I'll keep you all informed as I progress. Shots start 1/26/06. Since I am here, I have a whole slew of questions for my Dr. this Thurs when they take bloodwork.

[jmjm530]

Berry interesting :) Curious if they shared the protocol with you if that's under wraps for now. Wonder if some are getting sugar pills for the first month while others are getting either riba or viramidine. Can I ask where the study is taking place? Please keep us informed as it sounds very interesting. All the best luck.

-- Jim

[Magnum]

Thanks for the heads up on the harpoon needles subject. Just got off the phone with the pharmacist and he will order the syringes and needles you recommended. One strange thing I'm noticing is that my eyes are bulging out. I have to wear sunglasses so I don't scare kids. I will bring this to my doctor's attention. Anyone else experienced this pop-eye effect?

Magnum

[jmjm530]

Good luck with the needles and please let us know how they work out. As Chev says, it could be thyroid which can go haywire on treatment. I'd ask your doctor for a thyroid panel -- it's a good idea to have one periodically regardless of symptons.

-- Jim

[cougareyes]

I figured it out while I was posting that they wanted the riba to be at full strength in your body when you take the 1st interferon shot. Your expalnation makes sense, this may become a more widely used tx protocol.
Nauti, when is your first pcr; I'd be intereseted to see if they'll be getting a more rapid vl drop once the interferon starts.    Peace

[dyce]

Hello. Thanks for posting on my thyroid ? dealing with the irregular heartbeat.I did ? my pcp about this prob. and he looked up my reocords and told me that I just had a extra beat.This was dx thru wearing a hulter monitor for 12hrs. 1 day.However I did request the GI team to to a tsh panel to see how my thyroid is behaving.I did some research and found out that hcv can effect thyroid function.I will discuss this with the liver doc. next visit.I'm also considering a 2nd opinion at UPMC hospital in pittsburg pa.Thanks for your observation

Beagel Bailey are you out there and how are you tonight?

Dyce

[Magnum]

Better start getting used to wearing sunglasses...

Magnum

[hopeisalligot]

Hi everyone,
First time poster and I'll make it short (if I can).
I've had HCV for probably 30 years. Its never been higher than 1 1/2 million viral load and I've felt pretty good. BTW I am 52 years old. Six years ago i had a liver biopsy which showed grade 3/4, stage 3/4. Doctors never really made a comment on it as far as life expectancy. At only 600,000 viral load I went on Psgasys/Copegus for 48 weeks. I cleared and became undedectable at 24 weeks. (12 weeks was 445 vl and over 2 log drop). At one month post treatment I was STILL undetectable. 2 months after that my viral load was at 5 million!!! Never has it been even nearly that high! I can't find anywhere on the web that addresses higher viral loads after treatment.
Now I don't know what to do because I felt good for 2 months and now my legs hurt, am tired and I am itchy. I don't know whether it is the interferon "hangover" or the virus coming back.
I did check prognosis on the web and my liver biopsy results seem to show me (possibly) having 5-10 years of life left. I have no idea how a virus can come back when you are undetectable for 10 months! Where is it hiding???
Needless to say, I am very sad and VERY bummed.
Anyone else have a similar story, advice or honest expectations from here-on-out without 'spin' or hurting my feelings?

Good luck and God Bless to all of you!
DM

[cuteus]

I am so sad that you are now in this crux. Where is it hiding is one question even the experts can not answer.  The sad fact is that given the fact you were still detectable at wk 12, even though you had a good log drop, they should have tried and given you extra tx, especially with the damage present. A new study shows that if you are still detectable at wk 12, you are more likely to relapse with 48 wks of tx. Viral load has nothing to do with how much damage is happening to your liver. I had 376,000 one month and the next it was over one mill. It has no diagnostic value, so don't fret the viral load.  You do need to try and get on tx a second time. Some members here had to try more than once before getting SVR. Make sure the test used for the viral load during tx is sensitive enough. How low did the one month post tx PCR went? IF it is over 50IU/ml is too high, as some people can harbor a very low VL that goes undetected by today's tests.
I hope you find an option that will allow you to enjoy life for longer than you are now guessing.
I am also in my 50's and treated for 72 wks, because I was still detectable at wk 12. I did not want to chance a relapse and fought with my dr for extension. Some drs feel that the virus "hides" in fibrotic/cirrhotic tissue and might get released into the bloodstream as the tissue heals itself.
all theories. you must decide what is best for you now.
take care

[beamishboy]

just wanted to offer my sympathy; virus returning suxs!! cuteus has good -been there done that--advice... do have 2&3 timers at this forum that can offer support & info..It ain't over!!--you can win this fight....Good Luck

[cajunlady]

I posted on Mondays threads.  If you could take a look instead of repeating on this site. I'll learn I guess where to post as I go.  Be Patient with me please.

Sorry for the misspelled Kalio on the other comment.

Cajunlady

[Mister beagle bailey]

I am so sorry to here what your going through.  You can retreat like many on this site has.
This is just a thought,but maybe it's something else to do with the liver.  I think you should see another Dr. just to be sure, also labs do make mistakes, maybe another blood tst is in order.

Please feel free to post any questios you may have.
My prayers are with you,

  BB