Friend had no sides during tx and didn't respond

[Dale_Ray]

I have a friend and he is 40 and just finished 12 weeks of treatment. He is a 1B, He found out I was in treatment so we have stayed in touch via telephone ever since. We go to the same church so it was good to have someone locally to talk too. He called me the other night and his test are showing he is a non responder to the treatment. He will wait on the next drugs to come along. If I have a point at all to this it is how amazed I was at him not having any real sides from it. He takes his daughters fishing every weekend and works like a machine building houses. My nurse had told me that she has noticed over the years that the harder the treatment is on someone usually the highter the rate of clearing. She said it was not scientific only an observation watching her patients. Any thoughts on this? Anyone? Dale

[dyce]

Sorry guy to hear that but no doubt you helped your liver and now can go have some fun!

[can-do-man]

Bummed ain't the word, down right sucks. Have a good time down there. Best to you on what you do next guy.

[Algernon]

Six Flags on Treatment!  You go, girl!  I could hardly handle 6 Flags not on treatment.  But you've really made me crave one of those deep fried pieces of dough with powdered sugar on them (you know, like you can get at 6 flags).  I'd probably have more sides from that than from the Riba--but it would be just as worth it.

[SnoWav]

Went for the 12 week test and came up positive for C, a little bummed at the moment but I'll get over it.I was one of the lucky ones who was able to keep working thru 48 weeks of TX
with only feeling very winded when I did anything and just a crappy feeling all the time but no rash or hair loss and no anti depresents. My wife went the 48 weeks and is still clear 2 yrs later. I still have no regrets about TX ,I was feeling pretty bad before TX and feel much better after TX. I spent 48 weeks in the dark cloud forest of riba and next week we head to the bright cloud forest of Costa Rica .Not going to worry too much about what's next got too much to do.Cheers
jeff

[NYgirl]

Said:  So no sides, no clear?. Seems that one of those so called hepos, you know the "top dog", "worlds best" would have picked up on this.


LOL I was thinking of grabbing some onion dip for my chips on the side.... ;)  I have to agree. When people start spouting blanket statements like this the oldertimers here generally know what's going on and avoid a subject like the plague ;)

But then I'm skinny so I will SVR hahahahahaha.

Love ya Can you made me laugh - hard at that statement.

[dyce]

Mysx's are rough but I'm maintaining. I know a women whose son I took coonhuntin , the lady had no sx's and was geno1. Cleared the virus and is still svr 6 years later.

[Dale_Ray]

I know buddy. I think cuteous may have a point. If the sides are really bad and the medical people tell you that its a good sign they may only be trying to help the patient physcologically. I quit reading research papers because of the contradictions and plus I'm not that smart. I hope work improves today and the evening is good one for you. Dale

[can-do-man]

You ask.........shows ND is it reasonable to expect that further damage will stop? .............. Thats what my hepo told me. Unless i decided to go out and start drinking. He also told me that if i gain svr the odds are very good i'll have no further problem. He said the liver is one tough organ and can funtion just fine with even 80 to 85% shot. We'll do a uper gi once a year, ctscan once or twice a year, and blood tests every 3 to 6 months. People can and do live many many years with cirrhosis. Good luck going forward.

[anise]

I have had no severe sx's.  My HGB was in the normal range and at 6 weeks I was Undetected for the virus.  I asked my NP whether those with more sx's have a better chance of getting cleared. (She thinks it is an 'urban myth' that those who get severe sx's get SVR).  She has seen no correlation al all.  She has worked with the VA for years and at my clinic for 5 years, so she comes with loads of experience.

Also, a friend of mine had the worst  sx's, anemia, depression, low platelets, etc.  He did not clear!

Interesting topic though!

[returntosender]

I hear ya but what is "right."  I cleared at 4 weeks and I am now 40 weeks beyond that.  By the time I finish this next month, I will have 44 weeks beyond clearance.  Other folks have added more time after clearing early - Jim for one but he based it on the status of his liver.  If I were stage 3 I might consider adding some more time. But at stage 2, is it reasonable to add some time now and risk some other permanent damage from the drugs?  Part of my willingness to go with the 48 is based upon how quickly I cleared the virus and the current state of my heath. But I agree with you that doing this again would REALLY be difficult. Thanks for your comment.

[FlGuy]

I think that you two, and others here, are Stage 4 cirrhosis, right. I'm starting a new quest (no pun intended there) to learn more about the situation that I'n in and have not found any clear-cut answers. My basic questions are these. Since I am cirrhotic it there a way to define a % of liver function that I do or do not have.  Assuming that the 6 month post pcr (I'm expecting the result call any day) shows ND is it reasonable to expect that further damage will stop? assuming no drink, clean living. I've had another round of blood stuff last week, had at ctscan, ultrasound, schedules for upper and lower scoping. Is there anything that I'm missing? Bottom line, I guess, is to find out how many miles I have left on this thing.  As of last night alt/ast a little out of range and 6 months post-tx platlet have risen to only 112.

[can-do-man]

Dale wasn't shootin off at you or anybody here. Mood wise i've had better days. One of those days at work where if it could go wrong it did. I think studys are great and thank all the ones who take the time to fine them and read them. But like jim said......I should also note that a recent small study contradicted this but studies contradict each other all the time..... And thats true.

Like cuteus said.......Maybe the docs tell their patients these things in order to make them feel better about tx?

Hope you and all are having a good day

[cuteus]

if you responded by negative PCR at wk 12, you have a good shot at SVR with 48 wks, but if you still had detectable virus at that time, longer tx might decrease your chance of relapse. You want to do this ONCE, not think about what to do IF you relapse.

Take me, for instance, I rather go longer to ensure a cure, than taking chances of stopping by the standard and after feeling well post tx, start to feel like c*ap again with another tx! ugh!

Try to do it right the first time and insist on your dr following suit.

[returntosender]

I started to be annoyed by this discussion but then I realized that I don't have to apply it all to me!  What a concept, we are talking about tailoring treatment to our individual circumstances.  We bring a mindset of one size fits all - like the doctors would like to do - but we can certainly take all of this info and then apply it to our individual cases.  

In my case, I have moderate liver damage but lots of pre-treatment sx. When I started last year my dr said, 48 weeks and take all your medicine.  I never treated for this long before.  My thought is that I will do what I was advised to do. If that doesn't work I will get a biopsy and see if I have time to take a break and wait a while to see what develops. One thing for sure, if I dont get SVR, I will certainly look at longer treatment, pushing the reba, more stringent viral load testing and whatever other feedback I can pull from research and this forum. But what I am learning here more than anything thing else is not about T cells or TMA but how not to be casual about this disease. I really had no role model for responding to this disease.  I never asked anything because I didn't want to know. Watching you guys attack this thing and seeing how you do it is pretty inspirational for me.  

[Dale_Ray]

I suppose that is why people are always coming into the forum with new studies reveal and give a reference address for more information. I'd like to think that all hepos are like machines with the same opinions and same convictions to their patients. It's sort of like opinions and ***holes they're all different and doctors are no different. You've been quite today are you doin okay. Dale

[cuteus]

You do not have to endure horrendous sides in order to ensure SVR.
I did not get mouth ulcers, general rash, severe depression(another one that went around saying the more depressed the more likely to respond), nausea and vomiting. I was able to continue working, go to 6 Flags for the day a couple of times, classes at the Y, etc. It was no picnic, but no extreme, severe effects, and I am still negative. \
Maybe the docs tell their patients these things in order to make them feel better about tx?

[can-do-man]

my point is, i see my hepo he ask hows the sx's and if i need anything. Im sure he does this with all his paitents. Now he wouldn't need a study to soon figure out that none of his people with little sides are not clearing but the ones calling in needing rx's for sx's are clearing. I just think with all the hepos out there a few would be smart enough to figure that out. And if not then why go to a hepo if they can't even see this. Plus the geno1 50-50% chance would change

[jmjm530]

cdm says: Maybe we ought to play less doctor and more support here
---------------------------------------------
I thought "support" was covered in yesterday's breast stroke thread.

[Dale_Ray]

One thing I'll never be accused of is giving detailed medical information. I pay a doctor for that. I do find it interesting how points of interest lead to a lot of common threads (ha) between us. Other than the medication that was prescribed to me this forum has offered up more help than my doctor was capable of giving concerning sides. Doctors don't study sides they study counts. Anyway back to the boogers and chumming that the girls want to talk about. Stay out of trouble. Dale

[can-do-man]

So no sides, no clear?. Seems that one of those so called hepos, you know the "top dog", "worlds best" would have picked up on this. Maybe we ought to play less doctor and more support here

[NYgirl]

I really don't think it's a REAL BIG correlation I just can't.  Any blanket statement like that always make me real nervous...like when someone in here said "my doctor said all skinny people get SVR" (wow how nuts was that) I mean...there are ALWAYS diversities in every study and I'd hate for someone to quit thinking they weren't going to clear cause it was going too easy for them LOL.


PS I don't think you lose absorption benefit from the Riba by treating the anemia because one has nothing to do with the other does it? The epo is used to go in and grow stuff in the bone marrow...the riba has nada to do with that.  

I had REALLY bad anemia and Ribarash from the get go - really bad sides and in fact got the autoimmune problem now - and I didn't clear till week 24. If we were judging by how bad sides are I should have been clear then at week 4 no PROBLEM ;)

[hep62pj]

well... i guess now i know why i didnt clear haaaaaaa

sides were really not too much a problem for me, it did not interfere with my daily routine at all, never spent one day in bed from it...

[jmjm530]

Well, I did, but only because I did my homework, challenged some of her protocols and started directing my own treatment. Later, I switched to a different doctor but continued particpating in all treatment decisions. I feel lucky because I know this approach won't work with all doctors. Still haven't found a dermatologist who will answer more than two questions and will take *any* direction at all.

-- Jim

[jmjm530]

Individualized tx plans? Some NP's have individual caseloads of over 200 patients. When I handed one an article of a new study, her response was -- "I wish I had time to read studies".

-- Jim