TX side effects

[DragonSlayer45]

It seems that many people experience many different side effects and some experience almost none with "traditional Treatment" by which I refer to Pegylated interferon and Ribavarin. I know it has probably been posted here before but I think it would be interesting and helpful to hear about peoples experiences. I am treatment Niave and thinking of (but still undecided) about a new trial with NM283 but it uses peg and riba as well. I as many here have researched until my head is ready to burst, then researched some more, and decided not to treat a few years ago. It is the peg and riba that really concern me. I have reservations about taking them.

[NYgirl]

I was personally much more concerned with getting better than not feeling up to par all the time.  I convinced myself that they sides would be temporarily unpleasant and the cure would be forever.

While the sides can be bad - remembering that most of them ARE temporary and CAN be helped with the care of a good doctor...most people find that this treatment is completely doable (meaning we can lead happy and productive lives).

I personally have no regrets that I have treated and I have had some major side problems during treatment.  However, I've not let it get me down and I have only missed THREE days of work in an entire year of treatment.

I should also add I am seriously considering going for 72 weeks of treatment (as I have a DUAL genotype).  If it was really THAT bad...I would not consider it.

Sides go person to person so until you personally see how it would be with you...you won't know.  

I believe the peg/riba is completely worth the CURE.

Best of luck.

[FlGuy]

I think that there is at least one poster who is in an NM trial, her name eludes me now. Peg and Riba are nasty and many people put off treatment, or re-treament, becuse of them. Some of the newer drugs in trail may eventually be without riba someday.  The wait or go decision, for me, would be dependent on a lot of factors: geno, liver condition, insurance, other stuff in life, work concerns. For the purposes of considering a trial it's good that you haven't treated yet.  There is inclusion/exclusion criteria that must be met.  Go to clinicaltrials.gov and do a search to see if you can find that criteria.

[EquineLori]

O.K., I have a personal experience and don't know a d**m thing.  So, plese forgive me in advance if this comment is stupid.  Peg-Intron caused me to require narcotics for severe headache the day following injection.  Also, I think their delivery system is flawed - that membrane will often times leak live a sive, so accurate dosing is impossible.  I switched Drs. yesterday, and the new one scripted Pegasys because it is formulated using a larger molocule to prevent blood-brain barrier issues.  As far as Riba goes, well, FLGuy's math was correct.  I was taking a double dose.  Fortunately, I made a copy of the rx showing the double dose rx'd.  It was either physician error or miss-thinking on his part.  I'm to lay off Riba for 2 1/2 days and then take 1/2 of what I was taking.  Riba has been the BIG, UGLY, scorcher for me, but I was taking too much.  Perhaps a normal dose from the beginning would have been do-able.  You asked for it.  Best of luck to ya, Lori

[jmjm530]

Here you go:

http://www.medhelp.org/forums/hepatitis/messages/41879.html
http://www.medhelp.org/forums/Hepatitis/messages/41434.html
http://www.medhelp.org/forums/Hepatitis/messages/41439.html
http://www.medhelp.org/forums/Hepatitis/messages/41446.html
http://www.medhelp.org/forums/Hepatitis/messages/41492.html
http://www.medhelp.org/forums/Hepatitis/messages/41498.html
http://www.medhelp.org/forums/Hepatitis/messages/41506.html
http://www.medhelp.org/forums/Hepatitis/messages/41513.html
http://www.medhelp.org/forums/Hepatitis/messages/41515.html

[jmjm530]

Alady is in the NM trial. Scroll down to yesterday's thread,
"I can't eat"

[FlGuy]

I hope the new doc has your confidence. I guess you were using the Redi-pen.  The dribbles are expected but I know it's driven people a little nuts (NYgirl and me for two)thinking the dose was just running down the leg.  Maybe the reduction in the riba will make you feel better but don't expect a significnat reversal real soon.  That stuff has a lengthy half life and you've got quite a concentration.  There are many people who were purposly dosed in the neighborhood of 1400-1600 and they're still posting. Although, I'm a little surprised he cut out all the riba for a couple of days - but he's the doc and calls the shots (no pun).

[sfbaygirl]

Maybe it's time to do another "Stats" thread, as we have lots of newbies. I think we did Stats 1-4. Since DS asks about peoples sx, we could include those as well.

[jmjm530]

I did 2000 mg/day of riba between week 2 and 4 of treatment and ended up in the ER. The doctor then took me off riba for about a week. It looks likes I'll end up with SVR. Given your tx history, I think staying off riba for 2 days is reasonable and smart and shouldn't at all hurt your chances of SVR given its long half life.
Forgot your geno though? Most genotype 1's seem to take a minimum of 1000 mg/day of riba regardless of their weight. Something you might want to discuss with your new doctor.

-- Jim

[FlGuy]

Thanks for the name. Being unable to recall Alady's name, and other similar moments, is still very annoying to me. I still try to do daily post-tx mental acrobatics but i fall to the net every once in a while. I suppose I'll never really know if it's a hangover situation or just progression of time on the gray matter.  One area in which I get really stumped is recording measurements. I do lots of little projects around the house. I take a measurement, put down the tape, pick up a pencil to write it down and poof!, I've forgotton the measurement. Being sympathetic, my family says it's because I'm getting old. The old expression 'you're not getting older, you're getting better' certainly does not apply.

[Kalio1]

I think everyone has "reservations" about IFN/Riba treatmet but keep in mind these "new drugs" that are in trials are being given WITH IFN/RIBA in the trials so they WILL be give WITH IFN/RIBA when and if they do hit the market. Until the "new" drugs go thru trials as a stand alone drug they will all be given WITH IFN/RIBA so if you are waiting thiking you will avoid IFN/RIBA there is nothing saying that will happen in the future. Even the NM283 trials are with IFN/RIBA in the trials. Be careful waiting on things that have yet to come they might not ever arrive.

[jmjm530]

I couldn't recall her name either but remembered she opened a thread yesterday about gastro problems. A lot of my friends over 50 have age-related memory problems like you describe and they don't have Hep C, although they probably don't know Brian Fog as well as those of us who treated.

[EquineLori]

Hey, boys!  Thank y'all with my heart and soul.  Yeah, I have HUGE confidence in the new guy.  You know, I've posted that both docs-not-in-the-box were in the same building, different floor.  Well, a couple of buildings off was I.  What an idiot I am - no, wait - I'll call it cognative dysfunction disorder - but I think it still means idiot.  Oh, well.  I've also posted that I'm geno 3, but records weren't p/u from 1st doc-not-in-the-box, so I'm really hesitant to say for certain.  Thanks, too, for advising me to take MY records to the new guy, otherwise, the meeting would have been a total waste of time.  I hope you both realize what humanitarian heros you are!!!
My love to you, Lori

[DragonSlayer45]

Jim,
Thanks for the links you provided they are exactly what I was talking about. As always you seem to be on the mark. My doctor has agreed with me before about postponing treatment (peg+riba). Since I have little damage Stage 2, high VL, geno 1a, normal ALT and AST levels for years. As I have stated before in an earlier post I have had my eye on VX950 for a while as many others have until he mentioned NM283. Since I have been researching it trying to find out more. My concerns were and still are using peg and riba with it. I dropped my name in the hat for the trial and will listen to what they have to say and get all the paperwork before I decide. My biggest concern is even though I have HCV I still lead a very active life (sometimes too active). I have kids and run a youth organization that is very time consuming. Basically what I am trying to say is my quality of life is reeeeaaaalllly important to me. Do I get tired, yes. Do I get feel run down sometimes yes, but I can and do live with it. Sometimes I just need to recharge my batteries. I realized a long time ago that chances are I will die with the disease not from it. The sides people are experiencing and the lasting effects it has on some is very troublng. It is the chance of SVR that has me so intriqued.

[jmjm530]

If it were me, I'd wait at least a year to see how the Vertex SVR data pans out. In the end, QOL is what's important.