Update: after my 3 month PCR

[berlynn]

I know there are alot of newbies out there so I'll give you a little background first: I am female, age 47, 1a. When I was diagnosed, after a routine checkup, my counts were over 6 mill. This was in November 2002.We assume that I contacted Hep C when I was 10 yrs.old., so my body has entertained the DRAGON for a long time. I started tx in June of 2003 with pegasys and about half way through had to add neupogen to the regime. I treated for 50 weeks. The extra 2 were because I had meds left over. I took 100% of the meds 100% of the time and cleared right away, I believe by 7 weeks. Last August I went for a 3 mos PCR and I found out about 2 weeks ago that I have relapsed.
In the beginning I was devastated. I couldn't believe that I still had HEP C. My doc reminded me that I only had a 50/50 chance but, I still couldn't beleive it. I had taken a year off from work to put my ALL into fighting this didease. I put myself and my family through hell.

After stopping the meds last May, it took a while before I started feeling better, but slowly my energy started to return and the brain fog became less and less. I still have residual joint and muscle aches in my neck, shoulders and elbows...but it is MUCH better than when I was on the meds.

Even though the tx was not a success, it has stii changed my life. I have learned to appreciate everything in my life much more fully. I make sure I take time for myself to relax, read, do yoga and take care of my body inside and out.  
Whoops, I am not used to the new limits, so hopefully I can wrap this up on a comment, take care, kim

[berlynn]

Hi Guys,  thanks for the kind words. It warms my heart that there is so much support on this site. You guys are the greatest.

Showboat, thanks agasin for hang'in with me through the rough spots. You are a true friend.

Rev, I will be looking in now and then and I'll let you know what's up. My prayers are with you for a positive result in October.

Tallblonde, thanks for the info, and I'd appreciate any more info on alternatives that you or anyone else has.
Take care all, kim

[Amerabrit]

So sorry to read of your relapse, it must have been devastating to learn that the virus was back:(  I wish you the very best of luck in your tx decisions going forward.
Kind regards.

[honey1616]

Are you planning on doing 3month test or waiting until 6 months? If 3 month,,,that would be about end of nov right?  I'm really pulling for you on this one as I know you have put so much into fighting this disease!!

[sher_]

Is the SamE ok while on treatment? All the things you mention it is good for Billy could benefit! Thanks!
Sher

[Tallblonde]

Sam-e is short for S-adenosylmethionine.  It is a pill that (according to the packaging on my Nature Made version) "is clinically proven to provide mood support, joint comfort and liver health."  I can definitely attest to the first two claims and am hoping that the third one is true, too.  I take 400 mg. daily.

I buy mine at Wal-mart, but some posters mentioned some online resources that sell it for even less.  The best deal on it seems to be the one Calfia suggested: www.smartbomb.com

Susan

[mikesimon]

I too am sorry about your relapse. I've been there and may be there again now so I know how it feels. Take a break and relax for a while and then figure out your next move. Good luck. Mike

[Tallblonde]

I'm so sorry to read that you relaspsed.  But your attitude sounds great and I really admire that.  In addition to the teas (White and Rooibus) that jonhis mentioned above, I highly recommend Sam-e for your achy joints and muscles.  It has totally alleviated my pain and is well worth the steep cost (about $25-30 per month).  

Better treatments WILL eventually come along that you can fully benefit from.  In the meantime, however, don't forget that your liver probably did benefit from treatment, even though you didn't eradicate the damn virus.  And the other gains you mentioned can't be measured.  They count for a lot.

Best wishes to you Kim.

Susan

[MajNeni]

I'm so sorry the tx didn't kill the HCV virus in you, but at least other things in your lives and outlook have changed for the better.  We share that, as well as the life-changing experience we went through, doing tx.
I do think some amazing things are being studied about how this virus and disease work; and considering the progress they've made ~in the last six years, I think something quite powerful will be found soon against HCV.
Best to you, and let's share our hope for the future.
Maj Neni

[jonihs]

Scroll down to 9/3 and read tallblonds post on teas. If it's not something you're already drinking, I believe it's definitely worth trying. My prayers are w/ you always.  Joni

[BarnGoddess]

I'm a 1a relapser also that has decided to  wait to re-tx.
It feels good to just get on with my life.
It has been 12 months since I had to stop meds and I still have the "big" joint aches (knees, shoulders, elbows etc.)
I'm staying  booze free, trying to eat better and using massage therapy and a product called "Liquid Freeze" on my aching joints.
It beats any  Aleve or Tylenol type stuff. It sprays on  (non-areosal) you don't even have to rub it in  and costs about $6.85 for a 7 oz bottle. You can get it at 1-800-JEFFERS. It can be used on humans or horses. A bottle lasts along time and I find I only need it twice a day on really bad ache days.

April

[sher_]

Is Sam-E a tea? I have Billy and I have been drinking the white tea for several months since you posted on it. I bought the red tea last week and we love it! I can give it to Olivia as there is very little caffeine in the Rooiban. I have seen Sam-e written on here but I don't know what it is. Old Mr Bill has lots of joint aches. He is an architecural antique dealer and moves alot of heavy things! Thanks

Sher

Chev....Trying to renew the sparkle! Hug

[ringeding]

hi kim, i am so sorry to hear that you have relapsed.  how dis heartening.  you sound as though you have made some peace with it though....i wish you all the very best, and hopefully you have definately slowed the bugger down some in the mean time......i agree, i doubt i will re treat, i if my PCR is not favorable in november, but will wait it out for something else as long as i can....

my thoughts are with you kiddo

[Ambush]

I'm so sorry to hear about your relapse.  It's such a long and difficult time on tx to then find out it's back.  I'm sure it was a blow to hear the words.  You seem to have "gathered" yourself and gotten your head on straight to go forward and enjoy the good things life offers.  Like everyone else, I am hopeful that there is a better solution soon.  Take care.....
ambush :)

[honey1616]

Hi Kim! I hate to hear this news just as when Showboat announced that she relapsed,,,,My heart goes out to both you guys as you both are such caring loving people and so strong! If only we had all the answers as to why some clear and others don't.  I'm so glad you are taking a break and waiting to see if something else comes out soon and decided to get on with your life. We can't let this thing control and I know sometimes it sneaks in and does just that!  ((((Hugs)))))

[Califia]

Ah, gee, Berlynn, that's a tough break.   But  I just wanted to chime in and reinforce what you said about living in the slow lane.   The incredibly good news you relayed is your stage of fibrosis.  It's minimal, and given how long you've been infected it's safe to say that your disease is a slow progressor.   Yesssss!    This is truly cause for celebration.   And the odds are pretty good it's going to stay that way.  There is so much we can do to improve liver health that does not involve tithing either Schering-Plough or Roche.   Anyway, long, healthy, happy life to you, and please do stick around to advise all of us newbies who are just beginning our own long march (again).

BTW, there's a great converation about Pegasys Relapse on a board called "Voices" sponsored by the Hep C Association in Jersey:
http://hepcassoc.org/messbrd/index.php?act=ST&f=5&t=6808

[Showboat]

Glad to see you here again, Sweetie......No, worries, Kim, you and I are beating the drum around that fire at the DragonRoast........we will both be dancing with the others some day!!!!!  (I have been compiling that list for you too...and I have some reading material as well..will e you later)
Much love and healing to you, girlfriend......

[derail]

life, as with this disease is still a crapshoot.. you tried and were not successful..but you have not given up the battle may have been lost this time but you will win the war. It just may take time.Continue to treat the  temple of the soul with gratitude and caution and try to live healthy but occasional lapses for cotton candy are allowed  Take care
daryl

[berlynn]

To continue, I really try to avoid stress and stressful situations as much as I can. Life happens so, if it is stressful, I just try to not let it get to me.

I have decided not to treat again until something with a better success rate than 50/50 is out there for a 1a like me. Hopefully I will only have to wait for a few years. Mainly, I don't want to put my family through the stress and worry that was our life last year. The last few months of tx. were extremely hard both physically and mentally. By then, my family was more scared of what the tx was doing to me than the disease itself.

According to my biopsy before tx, I was only at stage 1 of damage so I think that I have the time to wait and pray for something better. Quality of life is very important and I need to be able to get back to enjoying my husband, children, grandchildren, and teaching again. At least for a while.

I am not sorry that I was diagnosed with this disease because It caused me to slow down and have an attitude of grattitude for the many blessings I do have in my life. If my body is the temple of my soul....shouldn't I take care of and maintain that temple? I am trying to eat healthier and exercise.....take better care of myself. Of course those of you out there who know me will be wondering about the chocolate and cotton candy and of course pudding...LOL.   Wellllll....I still appreciate those things as well...LOL.

Anyway, I guess I'll have to keep checking in here and lurking in the hopes that something better comes around. I wish all of you success in your battle. Of course I won't be dancing around the bonfire of my dragon wennnie roast yet....but maybe someday I will. Take care and peace to all, kim

[sofarsogood]

Good morning, I agree with you. While I await 6 month PCR, my life is changed. No longer do I run down the highway at 80 mph. Life, and what I have left of it is too precious now. At 47 with this disease since '76 I need to slow down. Even if I clear post tx @ 6 months I just do not what to live the fast paced life anymore. I bet a lot of us are sensing the same, especially after the on slot of combo therapy side effects. Take care all, have courage!!! Many, that you do not know are praying for you.

The Gaffer