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131817 tn?1209529311

Relapsed

Hi everyone!  Haven't been around for awhile. Between the fire move in and out and being in the hospital twice for internal bleeding, I haven't been here much.  Hope you are all doing well. I found out today that I replapsed. My viral load is 6.5, which I think is high?  I am NOT ready to do this again. The ischemic colitis could have been caused by the interferon, which I stopped at 47 weeks, although I planned on going to 72 weeks due to my not clearing at week 12. I am not sure what to do now.  My energy is pretty low, but I got out of the hospital 2 weeks ago. I am depressed now, of course. I really want to dump my dumb a$$ dr and get the Gish group, but haven[t sent in the appeal to there rejecting from my ins.  I know if I were to do this tx again I would double dose, and do everything full speed, but I really am not ready to get back into it again. I have been so sick since tx that I can hardly go a couple of weeks without something happening. Not sure all of this is related to the hep C or tx. I had the fibroscan which showed stage 1 or 2.  I am 55 and I just don't know what to do. Anyone have some suggestions?  I have been away long enough to forget some stuff and know new things are up and coming. Are there vertex trials for relapsers?  Apprieciate any comments and HI to all my friends from the past and HI to all you newcomers!

LInda
83 Responses
Avatar universal
Sorry to hear the bad news! Maybe you should take a year off thinking about HepC and tx.  You owe it to yourself.
220090 tn?1379167187
I am in the Vertex Prove 3 trial.  I have failed 7 previous treatments, but I never give up.  I think this one is finally going to do it for me, so why don't you wait for FDA approval of Telepravir before doing the really toxic stuff.  Not that this is a walk in the park, but it has  a high SVR rate and a short (24 week) treatment regimen.

I hope you feel better soon and don't ever give up.

Eric
Avatar universal
I am very sorry about the relapse. You have gone through more on treatment than could be expected of anyone. You're only stage 1 or 2 (maybe even less now with all that interferon) so my suggestion is to forget all about Hepatitis C for a long time and get yourself better.

If all these things started happening after treatment, 2 plus 2 suggests it's from the treatment drugs and not from the virus. Let the virus wait for better drugs. You need a long rest from the current drugs.

You'll be in my prayers tonight.

-- Jim
Avatar universal
Oh honey, I am so sorry you relapsed.  It almost seemed like the odds were stacked against you with the fire and getting sick.  Please take a little while and recover, get your health back.  I had hell the last year post-treatment from various things (appendix, thyroid) but I have faith next year will be better.  Let your body heal, your liver is okay for now, just wait for the new drugs.  The janis site may have some new info on vertex treatments (www.janis7hepc.com).  You and hubby are in my prayers.
Avatar universal
I have been wondering about you and how you are doing. So sorry to hear about your relapse, but you didn't get to finish your tx. I would wait for the new meds if I were you. Dr. Gish says they will be available in 2009. I sure hope so.

I had a very good appointment with Dr. Gish, he covered everything. He's very thorough. Today was my last shot.

I sure hope you feel better soon.
Take good care and God bless.
How are the kitties?

Grandma Adie
131817 tn?1209529311
Thanks for your comments!  I agree I just can't jump back into that toxic stuff unless it was for a short time, the last tx almost killed me. I was so sick all the time.  I would love to get into the Vertex trial, as I am afraid of the colitis and the horrible times I had on tx. I do feel better at times and it feels like a  miracle off tx. I won't give up and know at my age, I need to do something before I turn 60.  It's been 6 mos since tx now and I am still not ready to do it again with those toxins. My WBC is still low and my liver function tests are slightly elevated,  but it seems my damage isn't horrible.  I guess I need to get back into the frame of mind to re; tx. Nothing will be a piece of cake,  but I realize I should do something before I turn 60.  Thanks so much for both your comments! and nice to meet you!

LInda
131817 tn?1209529311
So happy to hear from you!  Your last shot!  Time to celebrate...did you extend?  I know you didn't clear early either.  I hope and will transfer to the Gish group, but I have to fight my ins. first. So glad you got to go to them.

My momma kittie died. We live in the wilderness with coyotes and mtn lions.  After the fire they moved outside as the contractors moved in.  I miss her so much.  I still have trouble getting the others inside.  Thanks for asking.  

So happy for you that your last shot is done!  Please give me a call and visit me anytime, I would love to show you all our art work and visit.

Love, Linda
131817 tn?1209529311
Wow!  So glad you are still here!  Your opinions mean so much to me!  I have to wait, I have been so sick for so long that there is no way I am jumping back into tx. I hope that the vertex could be an answer for me, since the tx reqieum seems to be not in my best interest. I can't imagine going back on the drugs for 72 weeks again...Thanks for your suggestions. I guess I just needed to hear this, although my heart and mind were thinking the same thing.  Thanks for your prayers!  Great to hear from you and everyone again, I have missed you all!

Love to all, Linda
Avatar universal
So good to hear from you as well although I feel so bad for what you've been through. Personally, in your condition, wouldn't even jump at Vertex as soon as it comes out unless you have reason to believe (Fibroscan or biopsy) that your liver damage has progressed. Vertex plus SOC is hopefully just the beginning of a new generation of treatments. Interferon may even be dropped at some point within the next 5-10 years. Let's hope so.

-- Jim
131817 tn?1209529311
Yes, I know that vertex is combined with SOC, which scares me due to my colitis.  I HAVE to have a break and at least get a couple of months of no illness in before I could even consider re-treating. Thanks for your input, if you have any other thoughts I would love to hear them.  How are you now?  I know you have passed your year, and are you clear? I would be surprised if you weren't!  Thanks for sticking around to help all of us.  

I had a horrible fall and couldn't even lift my head (another reason I haven't been online)  I appreciate your help and am sure all these newcomers do, as well.  Glad to hear your responses and am so glad you are still around!

All my best!
Linda
Avatar universal
Yes, I'm 16 months post treatment and UND as of the one year mark. Thanks for asking. As you may have remembered I had a very difficult 54 weeks but did not have to deal with the type of critical issues you recently had to. Just starting to emerge from the post treatment haze which is probably as much mental as physical although I was having significant skin problems up until this summer, not to mention a worsening of the metabolic syndrome. My thinking is that with many of us interferon magnifies and brings out just about anything that is going to come out, but it brings it out sooner. In that sense interferon ages some of us which is ironic because we're supposedly treating to live longer.

Anyway, as to other thoughts, just want to reinterate that you should seriously think about staying away from interferon for perhaps as long as you can. And I don't mean "months" after you start feeling better, I mean years, or perhaps forever if your liver holds up.

Because of the nature of this place it seems that the whole world is treating and ought to treat but that is not the case at all. Did you read "Kstar's" post? He's seeing the excellent Dr. Mc H., and the doc told him to wait. Best advice I've heard all day.

-- Jim
131817 tn?1209529311
Hi Sweetie!  Thanks for your post. Deputy Bug has done an amazing job in my absence.  She could step into the sheriff shoes any day, this is true.   My kitties have moved outside since the fire and I have lost the big mama, very sad about this.  Have you run over anymore skunks? I sure hope not, they can really stink!  Next time, please don't try to rescue them!

Love ya,  Linda
131817 tn?1209529311
Hey sweetie!!!!  Thanks for your comments, I agree.  I really need a break from this stuff, although b/c of my age I worry about not jumping back in. It is so great to hear from you and all my other buddies on the board, I have missed you all so much. I do need a break and your story about having post tx illness helps.  God knows I need to hear all these stories from my friends.  I feel guilty I haven't been here, except a few posts here and there. I need this place so much!

So obviously you are no longer on tx and Clear for how long?  I knew I was going to be positive after stopping early, even if it was a week.  I wasn't surprised, but it still feels like hell. I agree with you about taking a break. Almost everyone else has said so too.   Know any studies on age? Anyone?    

Love you and pray for your clear too!
Linda
131817 tn?1209529311
Thanks for your continueing comments.  I don't want to do interferon again. I did and is and could kill me. Why would I want to do that again?  I know I don't want to now, for sure. I am worried about age....I know you know the age after 60 on tx. It does seem that my liver isn't suffering too much. Yes, I have some symtoms, but my bx and fibroscan 5 years later say the same thing. Perhaps I am one of those 80% that never have escalating liver damage. Of course, reading and being on this board I am worried as hell that it will hit me at some point and kill me. My best friend died of liver cancer from Hep C. All I know is that I CANNOT do this again anytime soon. Who knows how I will feel in the months to come, or a year or two?  It does scare me and I want to live a long live without the symtoms of Hep C.  

I didn't do all I could have on tx, like the diet and excercise I should have done. Remember Rocker from Canadaa that followed that incredible diet? I always felt guilty eating ice cream and drinking Ensure. I have lost 30 lbs post tx. I am sort of happy to be at my 19 year old weight, but those wrinkles on my arms are disturbing.  I hope to get that energy to get into some exercises, but it hasn't happened yet.  I think having some hope that things will work out helps alot, although at times it is hard mustering up those thoughts.  So glad to hear you have 16 mos, I can't believe it!  I am soooo happy for  you!   Also, thanks for still being here and posting when I needed you!

Love,
Linda
Avatar universal
Bless your heart im so sorry  to hear of this news....No more hard times , time to heal and get whole again..your a strong lady youll get back into tx shape long before your 60s......

                                Blessings
                                         Goldyn
92903 tn?1309904711
Hi Linda - I'm really glad to run into you here. I also really feel for what you have, and continue to endure. With your low damage - I'd try to forget about it. How much was it bothering you for the first 20 years or so? You and the bugs can probably coexist quite fine if you're willing to share your body, so to speak. Take care.  
86075 tn?1238115091
hi, I've been meaning to get in touch with you, been wondering about you as well...so, yeah, of course I'm so sorry to hear that this happened...after all that you've been through. I'm with Good on this, I at least wouldn't go again till the new drugs are up, perhaps you could get on to some of the last trials, so you wouldn't have to wait til it's on market. Usually the last trials are really huge, like for the present drugs, and many, many more people can get on.

Also, that would give you time to recoup and regroup, get your strength back and all. I'd like to email you if I could, and catch up. I know you'll be feeling better soon.

Our friend Ina (an old member here) had so many things go wrong with her because of tx, one thing after another. She was on two years) some of the things that happened were quite alarming. But I just spoke to her today and she's really so much better. She found out she had been low on some vitamins, other things she did to make things better for herself, plus she's on a really good diet. Just some of my own personal thoughts on this, course take what you need and leave the rest behind.

I know you'll be better soon, and it's a godsend that you have such relatively low damage too. Maybe the next time you do a fibroscan, we'll do one together. Hang in there girl, we're all pulling for you. At least youre in such a beautiful area to get healthy in. Be well....
146021 tn?1237204887
Deputy Bug reporting as ordered!
So glad to see you're back, sorry about the circumstances. That stuff nearly killed you. 60 is just a number, and it's a long time away. Give your body a break, you gave it your best shot (or shots!) and look at all the sides you got for your effort. Your best friend died of hep c but what else was going on in her life? Permanent liver damage from alcohol abuse? Late tx of the disease? I have to wonder about people who die from hep c, as my best friend from high school died of it also. She also had very liitle liver left from drinking, was on a methadone program and was not able to tolerate tx.
I think I might have relapsed too, but I'm not going to worry about it at this point. I have so much GERD and hot flashes, getting sleepy in the middle of the day. Hope I'm just a big hypochondriac and it's all in my head. If not I'm not going to jump back into tx for awhile. I like the Christmas package tx, good excuse to not do shopping!
Oh well, Goof had a good idea, although I don't think he meant it this way:
"You and the bugs can probably coexist quite fine if you're willing to share your body, so to speak."

Are you willing to share your body with me?:)
How about when the time comes, we just treat together again??
Take care good friend....I've missed your humor and great attitude!
Hugs,
Bug
94007 tn?1224762736
I'm so sorry about your relapse - you are one of my heros on this forum and I always appreciated reading your comments. I'm back after a long absence. My son treated and is doing great, my daughter is still in a little denial but she did ask the doc about options at her last appt and they will discuss in january. my concern for her is once she finishes college I cant insure her. as for me, I am still followed by doc a in boston(we all are) and still advised to wait. how did i end up with my liver in better shape than my kids?
12773 tn?1328913186
I am so glad to see you, I have been thinking about you alot lately.And wondering how you were doing, and feeeling.   Going thru some new sx myself and wondering now if they will let me continue for the next 10 - 13 weeks.   10 more and I will be at 48, but he is still using that 12 month.   I have lost over 90 lbs now, and all of a sudden ( as of weds this week) dr is now concerned over the weight loss.  I am scheduled for a colonoscopy on the 19th, and they ran 9 blood tests yesterday, and a couple of those were to test me for cancer ?   I seem to have some pinched nerves from the excess skin..  Not sure though, just know that I feel like someone is putting a branding iron to my hip sometimes, just turning over in bed , then it started that in my arm on the same side of my body.  So will have to wait till I see the neurologist.  I have been on vacation all week, and we have really been doing alot around the house.   While outside yesterday , we were doing some painting on the entrance way to the house,   and I kept hearing something cracking.   I could not tell what it was or where it came from.   Then all of a sudden.. the big Acorn tree in our front yard, split right in 2.    So then we finished what were were doing, and had to get out the chain saw, as the tree was blocking half of the street.  So we trimmed the branches off and today have someone coming to cut it up and haul it away.    But we have to remove the other half too, before it ends up coming down into the house, which would be in our bedroom if it did.  I really do not have the money for this, but I guess we have to do what we have to do.   I am so broke this year, with going thru treatment and all the copays.   I really hope something new comes out for you soon, or like everyone else says, take a break from it for a while, and see what comes about as far as new tx drugs.
254544 tn?1310775732
So sorry to hear about your relapse.  Hope you feel better soon.

Mouse
Genotype 1a, Stage 3, Grade 3
Finished 48 weeks of tx on 4/13/07
Hoping for SVR on 9/20/07
Avatar universal
I am so sorry about this. I agree that a break from any kind of treatment seems like a wise choice for you at this point. I hope that you fell better and better as time passes. Good luck. Mike
96938 tn?1189799858
Before I turned on the pc this a.m. I was thinking about you and how you were doing.  Daughter had a girls' sleep-over here last night and the movie of choice was Jumanji. Kind of fitting, huh?  Even though you may be feeling boxed-in with the current conditions, I think you are aware enough to know that there may be other choices and alternatives out there.  First, I hope you get all those other issues resolved and feel better so that another go at hcv, at some point, can give the the opportunity to resolve that too.  Hi to John, ok?
Avatar universal
When I was still lurking, not posting, I followed your story and learnt much about how to interpret viral load results and the benefit of getting an UND by week 12. I am shocked to see that after all you have been through you relapsed. Zazza
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