nonresponders

[suzieq2]

I am a nonresponder after 44 weeks of peg/riba . I have been off treatment for about a year. I still feel horrible.The fatigue, nausea,in general feel worse after treatment than before, just wondering if there is anyone else on the forum with the same problems. I will get up in the morning feeling pretty good,then I will start a project,after about 3 hours I am down. Pretty much everything I do is forced. Wish I never would have been the guinea pig.I have noticed how gung ho and posative the internet sites were when I started treatment,and that has now changed. It is more talk of waiting for the magic cure.So many nonresponders and relapsers.My insurance nurse came right out and told me , ther is no cure,and I believe that to be the real truth. If I had to give my advise.Don't do it unless your liver stage warrants it.That is my harsh advise.

[suzieq2]

After seeing a Hepatologist at the texas liver center at the University of Texas who does transplants on hcv patients every day is the Dr. who finally gave me the straight no bull answer,after 44 weeks of treatment vl slowly dropped down to 75,000 checked my vl again 48 weeks it went to 300,000 + There is nothing for 1As & 1Bs . Do not retreat with what we have out there to offer. Great things on the horizon, THERE IS NO CURE! After learning so much after intence study.#2 on biopsy ,I never should have been put on treatment in the first place. The real numbers are about 15% for1s.I had and have time to wait for better Medications.That my friends is the difference between seeing a hepatologist who specializes in hepatitis and a Gastroenterologist who has had hepatits thrown on them, not really knowing their head from their !!Icannot stress enough  HEPATOLOGIST!!!  3 OPINIONS!!!!!

[CockSparrow]

I almost feel bad saying this but I actually felt better during Tx. I now know what its like to be virus free. Tx has failed me twice and you can bet I will be having another go b4 the new drugs get released, if I get my way.

It would be interesting to find out why some have little to no sides while others suffer badly from them. There must be a reason.
I'd swap more than a few sides for SVR.
CS

[GrandOak]

Pretty much the same boat for me too after 41 wks of tx.  Although there are days were I do feel alright.

Would I treat again?  Absolutely and will do so should I be given the opportunity.

Do I hide my experience under a bushel?  Absolutely not!  People need to know the truth and the sad fact is for 1A's it's a 50/50 **** shoot..  Personally I don't think we should go around setting unreasonable expectations and false hopes.  I believe it will only make it that much harder to accept if a person joins us in the unfortunate ones bleachers.

Do I hold much expectation for any relief in the foreseeable future from medical science? No or more precisely H-LL NO!  Some might call it being pessimistic, I prefer to look at it as being realistic.  I have not seen one study of any of the meds which greatly improves anyones odds.  They do show signs of making tx perhaps more tolorable and sometimes shorter for folks who might not otherwise be able to attempt.  But increased odds do not appear to be showing up in the numbers I've seen.

Mister Beagle:

Good to see the droopy eared dog man again!!  I too suffer from the red ankles and swelling in my right ankle.  Compression socks have helped me some, although now my left foot always aches.  I was also blessed with type 2 diabetes from my tx bout with the dragon.

I hope your fatigue has gotten much better post-tx though as you had one tough go with it during tx.

[meki]

I'm going to say this for you guys.

I think TX sucks. I think the SX sucks.

I think the Post TX suck.

BUT --- I would treat again and again if I had to.

I have a lovely 11 year old daughter that deserves the best and most that I can give her.

I have a husband who deserves not to raise her alone.

I have family and friends who count on me.

I have a life I want to live.

Right now - and anytime in the near decade, there will be nothing changed for the SOC.

I'm not willing to play Russian Roulette with my Liver and my body to wait for trials to tell me that the next treatment will cause even more side effects than the current SOC.

I don't believe that there will be anything better or less horrible on my system than the current SOC ---- while my liver is still functioning.

However - I believe there is still hope for non-responders... New things do come around. But I don't want to take anything that might be worse than what is currently in effect.

The next ones might have deadly side effects.

This one just has sides that make life uncomfortable - but I can survive them.

Just my take on it.

And each person is different - each person reacts differently - each person has a different outlook and side effect life.

So - you have to choose for yourself and your situation.

For Today - because tomorrow might not be the same.

Meki

[willows]

Don't let it get you down, tx is very very hard, but the alternative is far less attractive.  So many people here have actually achieved SVR, I choose to focus on their stories, the perspective is so much more positive.

Treatment for any serious illness is very difficult, but I feel kind of lucky that I at least have a chance with tx....add in some of the new drugs and we are right around the corner from a lot more of us being able to achieve Sustained Viral Response.  I love those words!!

Hang in there, help is comin round the bend.

[Upbeat]

My personal observation is the people doing TX are the biggest supporters of other people joining them.  And look out if you don't agree.  I hear to many during and after TX problems. Makes me uncomfortable doing the treatment.

                                                                                                          Ron

[Mister beagle bailey]

I relaped last June after completing 26 weeks of tx as I'm a 2B.  I have bone pain in my feet and ankles.  Ankles take turns turning red and swelling but know one has an answer as to why.  I didn't have this problem before doing tx and now know my body can't take another round of riba because of my thalassemia (anemia).  It's not the first time I heard someone from the medical field say there is no cure for hep C and I'm being to wonder what the real story is.  I do understand how you feel.

Beagle