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Hep C Discussion Forum -> Post Treatment -> Missing person!?
Post Info TOPIC: Missing person!?
Groupergetter


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RE: Missing person!?
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Hi Taz,

Good to hear from you, and to know things are back to normal :) :)   You persevered some rough times and made it.  Dragon slayer!     Peace



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1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.
Hep Me


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Taz! I just stopped in for a visit and saw this post - was surprised to see you on the forum.  Dang, I see you've been through a lot.  I am glad they finally found a combo that would clear your disease.  Hugs from the north country.



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"Ah but I was so much older then, I'm younger than that now."  Bob Dylan
MzmiffY


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Hi Taz, cannot begin to comprehend what you have been through but I'm so glad you feel close to normal. What a trooper! 

Be kind to yourself, you deserve it



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42yrs/ f3-f4, gen 1a, 48 wks of Interferon,Ribaviran and Boceprevir. 

VL pre tx-384303, VL @ 4 wks 11095, 8wks- UND.

UND@ EOT, SVR 24!

 
TazKat


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I did 4 treatments, all with the riba.. hate that stuff. my last one was last yr with solvadi.. I think I am almost normal again.. lol  keep ur chin up always!!

Peace out

Taz



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TazKat Genotype 1A null responder x 3 riba & iterferon twice, relapsed from Incivek 2012 with only 12 weeks left to do. stage 4 mild cirrhosis 4/25/2014/ started sovaldi riba & interferon.. finished treatment 7/17/14  results 7/25  cleared..

 

 
MzmiffY


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Love your attitude bubble and Thankyou for sharing x



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42yrs/ f3-f4, gen 1a, 48 wks of Interferon,Ribaviran and Boceprevir. 

VL pre tx-384303, VL @ 4 wks 11095, 8wks- UND.

UND@ EOT, SVR 24!

 
bubble


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MzMiffy: When I get slammed with a bout of depression I somehow look to the next day, and the demon is gone. I refused to let that Pegasys horse kick me in the head. Find and find again a new avenue. You'll be OK. 



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60 yrs. Geno1b 2001. 9mil. VL. �Failed Post Riba/Peg tx. 2006 46 weeks. Diagnosed 1A 2015(?) F3 fibr. 225k VL. Vikera/Riba 12 weeks 3/20/2015. "Undetected" start to finish. Undetected 1yr post tx.
MzmiffY


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Hi Nirmalee, thanks for writing! I can't imagine how I would feel after 3 treatments, talk about resilience! I'm glad you have that something special that can turn darkness into light.i feel that way about all my furry babies. I have a history of depression and suicidal ideation but thank goodness those feelings have remained in my past along with my substance abuse. 

Hey kath, I'm so glad your nearing the end of tx, well done because it ain't easy!

Im sorry one of your relationships is being tested at this time. I can understand how upsetting this would be,I also commend you on having the grace and courage to take some level of responsibility. Not easy or at least it wasn't for me. I'm usually the bigger person in instances of conflict but since tx have held onto a stubbornness I'm not exactly proud of.

Its incredibly frustrating to be on the receiving end of " snap out of it" etc. it only ever left me feeling misunderstood, which in turn, hurt deeply. You are dealing with alot so be kind to yourself. We are here for you!

Nirmalee, Kath, Groupergetter and friends...have a beautiful day x



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42yrs/ f3-f4, gen 1a, 48 wks of Interferon,Ribaviran and Boceprevir. 

VL pre tx-384303, VL @ 4 wks 11095, 8wks- UND.

UND@ EOT, SVR 24!

 
Groupergetter


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Hi Kathy,

I think to some extent, all those who have suffered this virus for many years have or have had depression.  The chronic fatigue, ongoing and numerous aches and pains, and frustration that  accompanies this disease truly is depressing.  I understand the brain fog we have is a physical response, but I sometimes wonder if it isn't also a response by the body and mind trying to tune out the pain, fatigue, and other problems that accompany this disease?   

I like Nirmalee's idea of keeping a picture of someone you love or perhaps a pet handy.  I have a great picture of my 5 month old grandson I keep in my wallet.  Also have several on my phone.  Every time I look at him I get a huge smile.  Once you reach SVR and get the meds out of your system, things will improve.  Gotta say, everytime I see someone here reach SVR! it also brings great joy.  Hang in there, brighter days are ahead.  Three weeks will go by quickly.    Take care.



__________________

1b  Int/Riba relapse @ 48 weeks.  Stop tx Peg Int/Riba 12 weeks ill. Relapse S/O 6/23/14 :(   Started Harvoni 11/12/14  EOT 4/28/15.  EOT+4 UND :)  SVR! 8/4/15  :)     Thankful for every morning.
247kath


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I'm on a clinical trial of Harvoni and ribavirin and have been having the dreaded 'riba rage'. They didn't warn me in advance that this may happen.  I overreact then slide into a self loathing depression. Had a meltdown last week and the hospital that is administering the trial said they couldn't help as I had pre existing depression. Have seen my gp and psychiatrist and I've been assured it's the drugs talking as magnifying everything. Disheartening to see that the side effects last for months after but will be grateful if the virus is gone!! 

Ive decided to warn all my friends and family of this side effect as I've already pissed off one friend who said she didn't want to talk to me ever again. This of course makes my cry as I type it. I've sent a letter apologizing but not sure if people really understand depression in the first place (just snap out of it! Think positive!) let alone drugs that exasperate the depression!

Will just keep plugging along as I only have 3 WEEKS LEFT OF TREATMENT!!!!! Yay!

smilethank you all for all the great support and info heresmile

Cheers

Kathy



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Treatment naive -Genotype 3a -no fibrosis. Found out in 90's that I had HCV. Started clinical trial June 9/15 Harvoni/ribavirin
dragonfly


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Hi Miffy,

I've had 3 lots of treatment and prior to that had no issues with depression, and then it hit.  I still have dark days (very dark days) but I have to say to myself ' you know what this is, look around at your wonderful life'.  I also keep a picture of my nieces with me and take them out and think about the consequences if I were to act on my thoughts.  Good luck and best wishes,

Nirmalee



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MzmiffY


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Cinnamon girl, tigy, Mallani,Jim,scruffy,dustbear,Mike,Paul and anyone else who took the time to read...Thankyou so much, I am always touched by the effort and kindness thats so readily offered by people here. 

you are all amazing and inspire me in different ways,

Thankyou x

 



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42yrs/ f3-f4, gen 1a, 48 wks of Interferon,Ribaviran and Boceprevir. 

VL pre tx-384303, VL @ 4 wks 11095, 8wks- UND.

UND@ EOT, SVR 24!

 
Paul B


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Hi Miffy,

 

 I can totally relate to your experience. I feel like I have lot my mind.  I'm fearful of walking out the front door as I can't be sure of how crass I might be in certain social situations.  Mostly it's OK.  The problems only occur after I wake up each morning.

 

 



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57 Yr old, Diagnosed 1994 Geno 1a. 1995: Interferon 12 weeks.  1998: Int/Rib 10 weeks.  2014: VL 106,000. Peg Int, Ribavirin, Victrelis 48 weeks (commenced June 2014). UND after Peg/Int lead in week 4. Still UND at week 8, 24, EOT. SVR 12.

wmlj1960


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 I experienced the riba depression crap and it took a while after EOT to start feeling "normal" again. Still getting better every day 7 months post EOT. All to no avail. disbelief This time my hepatologist chose to treat without riba and, although I would have liked the added ammunition, I sure don't miss it! Harvoni alone is a cake walk without the riba crap! 



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60 yo, geno 1a, Dx 1994 HCV-HIV co-inf, Dx 2013 decompensated cirrhosis
Tx #1 - 24wks Sov+Riba /SOT 7-24-2014/UND@EOT/DETECTED@EOT+16 wks
Tx #2 - 24wks Harvoni /SOT 7-25-2015/UND@EOT,+12,+24,+52 = SVR

Mike

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dustbear


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Hi Miffy,

I finished 45 weeks of riba/interferon in Dec 2013 and was taking a pill called Citalopram for extreme rage and moodiness. It helped somewhat but for the most part it didn't.

After tx, I eventually cut down to half a pill after a year and it seemed like I was finally back to normal.  So I tried to stop but could not control my moods.  So, I am back on half a pill and wonder what's next. I thought I wasn't moody before tx but it's been a while and now I wonder maybe I really was! 

Give it some time, and see your doctor for some relief.

You are not alone.

all the best

 



__________________

Geno 1A, since 1981. SOT 1/2013   TX stopped 11/2013 in week 45/48 due to Myositis & Interstitial Lung Disease. Completed 94% of Peg-Inter dbl TX, UND since week 4.  SVR 4/2014!  Still SVR after 4+ yrs!

"Day by day, step by step, breath by breath"
Scruffy


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Hi Miffy

It took me about 6-7 months to get rid of that. At one year its pretty much gone. The worst of it is over it just takes time. I still "snap" at times but we seem to forget that this is part of being normal we are just more aware of it because of what we went through with the riba rage.

Hang in there. :)



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Geno 1a null responder 2004 inter/riba   finished incivek,peg/riba 48 weeks May 17th 2014. undetect weeks 4-12-32.  EOT+7 undetect. EOT+24 SVR!!!!! EOT+!YEAR SVR!!!!
JIme


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Minimum 6 months to get that riba out of my system completely. Hang in there. Yoga helps!!!!!.....lol....

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jim

GT1a, St2 Lv2 last biopsy 2002, VL  11.4m,  start triple tx 9/30/11

VL 470 @4wks.....VL 22,000 @8wks  stopped tx

Round 2-  Started 3/16/12   PSI-7977, BMS-790052, Riba Undetectable day 14

Did 24 weeks Still UND 12 weeks post tx, SVR24!!!!!!! 2/14/13

 

 

 

 

 
mallani


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Hi Miffy,

As Jill and Tig have said, it's quite 'normal' to go through this, particularly after 48 weeks of Victrelis triple.

You've still got Riba in your system and the mood swings and rages are common. Just be kind to yourself and you will be back to normal soon.

It takes time to accept the joy of SVR and appreciate that your liver will recover. You'll be fine, and find yourself again. Best wishes.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Tig


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Hey Miffy,

Jill is speaking the truth! You're still in your recovery process and are going to experience these highs and lows for a while longer. It took me a minimum of a year and I took the 28 Victrelis protocol. I was so anxious to be "normal" again, I concentrated on every little (and big) thing that happened during that recovery period. When various things occurred, it would set me off and put me in some kind of funky mood until it passed and I realized it was just another recovery issue. 

It will be two years in December since I ended treatment and things have drastically improved, but there are still days, that like you, I wonder if part of me is different. My memory still plays tricks on me, but nothing like it used to. I have to write off a lot of them to age, circumstances and just being an occasional "air biscuit"! Don't worry, you'll find the old you again, but it's a longer process than we first realized. You're still in there, that I'm sure of!! 



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Cinnamon Girl


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Hi Miffy, sorry you`re going through these fluctuating emotions, I know how scary it can feel.

I was on Peg/riba for only 24 weeks but I remember that the `riba rage` was the last side effect to go, it stayed with me for a long time post treatment and took many months until I felt anything like my `normal` self.  Ribavirin takes about 6 months to clear from your system and although I`m sure it must seem ages since you reached EOT, in fact you`re still in the recovery period.  You did a long difficult stretch of 48 weeks so it`s going to take time to get over that.   

If you`re concerned about your continuing mood swings I should definitely speak to your doctor, it could be that you need some help in the form of a prescribed medication to give you some relief while your mind and body are still adjusting.  

Try not to worry, do what you can to ease the pressure on yourself and spend some time for yourself, doing things you enjoy.  I`m glad you`ve told us about how you`re feeling, I`m sure others will want to add to what I`ve said.

Wishing all the best!  smile

 



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
MzmiffY


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hi all, I am kind of recycliing previous concerns but anyway..I'm about 5 months post tx and while most sides have diminished i am still finding myself increasingly vulnerable to fits of rage and irritability. i experienced this on a small scale toward the end of my 48 wks but now feels amplified since finishing tx. It feels like someone has hijacked certain parts of my brain and that I lost myself somewhere between the RIBA and the interferon. I'm losing confidence that this is temporary. When I'm not overwhelmed by instances of rage, my mood generally is happy, the concerning part is how quickly things can swing from insanely good to insanely bad. Does anyone who has experience with the older protocols feel like they are"missing"? 

Thanks and hope you are all feeling good

x



__________________

42yrs/ f3-f4, gen 1a, 48 wks of Interferon,Ribaviran and Boceprevir. 

VL pre tx-384303, VL @ 4 wks 11095, 8wks- UND.

UND@ EOT, SVR 24!

 
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