update on progress at 3 mos. post tx

[Gerbils]

Hi Everyone,
I have said I would keep everyone in the loop about my treatment and this is my 3 mos post tx update.

I treated with Peg+riba+incivek. I only made it 9.6 weeks on incivek when my doctor had me stop due to rash. I was UND at weeks 4,8,12, 24. I found out yesterday that I am also am UND at 13 weeks post treatment. That is outsatnding news. We ran the test because I still break out in a rash occasionally. It comes and goes. It is around the base of my neck in the front and I have a small patch on my forearm. It is somewhat similar in appearance to the rash I had but it is different in that the old rash was deeper. This one can literally appear in seconds and disappear just as quickly. The symptoms that I still have are a very painful shoulder. I experienced a lot of joint pain during treatment and for the most part the shoulder is only joint that still hurts. I still get some physical tenseness occasionally (Jasmine coined this term- it is hard to describe but that fits it pretty well) and don't respond well to stress. I also get a little anxious. Having said all of that I will also tell you that I am very happy. Not just because of the UND but truly happy. I enjoy life every day. I am happy that I treated. Yes, my hair is way thin (it is growing back but with my hair in a ponytail I look like a dandelion in the wind- LOL), my shoulder hurts and I get stressed when I normally wouldn't, and I have the rash but I am happy. I am energetic and doing fun new things in my life.

I need to thank the people on this forum who have gotten me through so much. When I found this site I was terrified of the disease and the treatment. Your support and advice got me through this treatment. Between all of you, my doctor, my husband, and a dear friend I met on this forum I am here healthier and happier than ever before and hopefully free of hep c for good. I am still going to get the blood test at week 24 post treatment and will report the results. Meantime I will chime in here when ever I can to help.

Thank you all so much! I am praying for UND for all of you too. Godspeed on your journeys!
G

[beeblessed]

Hi Gerbils!  I'm not outta the woods yet.  Still having Anemia symptoms, on and off.  Still dealing with a few other sides.  Thanks so much for the prayers :)  I will look at my Multivitamin to see if it contains B6.  Thanks for the tip!  I don't have carpul tunnel though, just severe tendonitis in my elbows and shoulders.  I've had a previous frozen shoulder that required 3 injections (which is standard).  Hurts like crazy but it did help with range of motion in about 48 hours.  As for the shoulder stretches, be gentle and check out some other ones, in case that one is not comfortable.  If your insurance will cover it, you can certainly have your doc refer you for physical therapy.

Congrats again on your 3 months UND!
And congrats to Roostermom too!

Bee

[Gerbils]

Hello Dear Bee,
Thanks for the post.It is nice to see you on here. I will try the stretches! I feel I am lucky because I have heard of people getting frozen shoulder and mine is only stiff and painful. If I can stretch my way out of it I will let you know.

You sound good and I hope you are still doing well. I am praying for SVR in your future Bee. BTW, how are you doing with the carpul. I had it for a while and found that vitamin B6 100mg a day is helpful. If you haven't tried it you might want to give it a go. The pills are small but bitter so be sure to have lots of water available! Take care,
G

[Gerbils]

I am proud of you and praying for you! Those purple pills sure seem to do the job but I know how hard it is. I am with you in spirit. Take care and thanks for the post.
G

[Gerbils]

Congrats on the post tx UND! This is awesome. This forum made me feel that I wasn't alone and the only thing that could be better than that is to be with y'all as we become UND. Thanks for the update! Hugs to you and yours!
G

[beeblessed]

Hello my friend!!  This is awesome, awesome news!!  Thank you so much for the update.  As for the shoulder, try some gentle shoulder stretches.  I have pre-existing shoulder pain and when I remember to do it, this stretch really helps me (and ice helps too):

http://4.bp.blogspot.com/_rlqRDEwcDro/TA2F3qpeX2I/AAAAAAAAAEM/LYkaUwJTDxE/s1600/chest+stretch.jpg

I have modified it by shuffling in small steps, through the doorway, until I feel a peck stretch.  Then I back through and start over again.  Here are the instructions from where I got this image:
=================
Standing in a doorway, place both hands at shoulder height on either side of the doorway, elbows bent. Step your right foot forward until you feel a slight stretch in the chest muscles (being careful not to stretch too much). Hold for 30 seconds.

• Switch feet, stepping your left foot forward. Hold for 30 seconds.

[LookingForward12]

It sounds as tough the SVR gods are definitely looking out for you! Your story is inspirational.
I am persevering for 12 more days of Incivek in spite of The Rash from you know where.... I keep thinking, way in the back of my mind, I could just not take this any more...but I won't act on it because should something happen and I not stay clear, I'd never know if it were my decision that affected that would I? So I'll continue on til the last of those purple monster pills are gone.

Keep moving, keep smiling...and with that lovely attitude ofboursblife canonly get better!
Cheers.

[roostermom]

I just got my 3 Month post triple tx blood work back and I too am still undetected. Let are numbers keep expanding and encouraging those on tx or are thinking of starting. Yes it can be rough, but post tx I feel like my old self so it is all worth the hard work. Congrats to all and keep on working!!

[ellenc10]

Yes I did another 12 wees of peg and reba after incevik.(not 24).

[rockymoe]

Great News never get tired of hearing these success stories. I surely hope this is the treatment that slays the dragon for me!

[JasmineT]

Great news!  A very strong indicator you made!  I am so happy for you and it sounds like the sx are dissipating too.  Hoping the best for you.

[flcyclist]

Was hoping to hear this good news for you and so happy to hear it. Congrats, things are looking very good for you. :-)

[skiyaltr]

That is great news.  The rash is a beast.  Keep us updated.  Love success stories.

[Revalation]

Thanks for the wonderful update.
Praying for SVR

Reva

[stormy456]

What a happy post!  I'm so happy for you and your husband, odds are completely in your favor for SVR.  

[ann61]

What wonderful news.  Your story certainly gives me inspiration.  Thank you for sharing and continued good health!

[jsf52]

I am happy for you.  Congrats on the 3 month and onward to SVR.

[screaming48]

So happy for you keep on being happy! Congratulations on remaining und....anne

[Dee1956]

I am beyond happy for you!  Congratulations, you are a dear to share with everyone
Big bear hugs ((()))!!!
D

[1oftheclub222]

very good news!  Congratulations!  Thank you for keeping us up to date....

[Gerbils]

You are amazing to have gone through so much. My doctor had one patient that took Incivek for less time than you, was EVR but completed the rest of the treatment period with peg and riba and SVR'd. Thanks for posting.  I sure hope you SVR!
G

[orphanedhawk]

What wonderful news. Thanks for sharing it with us.

[Sean718]

Hi there!  You may or may not have read my previous post but it was my first and since I read that you have cirrhosis, I would like to paste my first post here for you in hopes that you will share your story and experience with me, and perhaps shed some light or offer advice.  Anything helps.  Thank you in advance!

My grandmother has had Hepatitis C for years and she is now 69 years old. She has been drug and alcohol free for over 35 years but the damage was already in progress. She never did the treatment for Hep C because her gastric doctor thought it would be too harsh for someone her age. She just got a liver biopsy and has been diagnosed with Cirrhosis of the liver stage 3/4 (stage 3, border line 4) yet she has absolutely no visible symptoms at all.  I'm just afraid of the unknown and the days ahead.  I reassure her that she and everything will be okay but Lord knows I'm terrified, and I've cried alone each night since her diagnosis.  Anything you can share with me would be greatly appreciated.  Thank you again in advance!

[Sentinel13]

Hi Gerbils: Thanks for the update. Looks like Ellen started treatment 3 weeks after you did. Now, it's on to 6-month SVR and being cured!. Cheers, GB

[yodennis]

I was discontinued at 9 weeks too while continued (and continuing) on the interferon/ribo for 48 weeks. Although I was formally discontinued because of the rash it was the intractable anemia that stopped any protest from me. I have cirrhosis, was a previous non/partial responder to mono and dual therapy. This time around on Incivek, etc. I was undetectable in about a week and remain completely undetectable at 8 months. My EVR leads me to be optimistic about continuity towards SVR....d