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Hep C Discussion Forum -> On Treatment -> Justme50 has passed away, complications from Interferon/Harvoni treatment
Post Info TOPIC: Justme50 has passed away, complications from Interferon/Harvoni treatment
Bills


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RE: Justme50 has passed away, complications from Interferon/Harvoni treatment
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Hi Amanda,

I had posted this on the Harvoni train thread as that's were I say this awful news When I found this thread i wnted to make sure It gets to a place you'll see it

Here is that part of the post

I'm very saddened by this news about Monica, It leaves me speechless. Except my condolences to you Amanda, She is part of this family too she will be missed but not forgotten, As far as your thoughts on the cause I don't recall seeing this TTP condition discussed. It would be wrong for me to make comments on any thing as serious as this  I am not a (doctor) but it gets my attention. And  again Amanda we give you a compassionate Hug we wish we could give your Mom Monica, but she must know that already.

Peace

Bill S



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Bills

Harvoni started 12-12-14 for 24 wks PrevTX Geno 1 stage 3 cirrhosis - non resp Int/ ribv. Started Trial  in Aug 2011 -July 2012 into Incivek relapsed  Feb 2013 Had 72 weeks on interferon & Riba.

wmlj1960


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 So sorry to hear this awful news Amanda. Thank you for sharing this information about TTP and for letting us know about your mom. You are both in my thoughts and prayers.



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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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Stormy


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My condolences also, my prayers are for you and your family.

Stormy



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Greg D


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Amanda, sincere condolences from my family to yours. R.I.P. Monica



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60 yo (2013), genotype 2b, started 28 week tx Sept.14, 2013. Triple Therapy (ribavirin, victrelis, peginterferon), VL 235k prior to tx, UND right through. EOT March 29, 2014. EOT24 Sept. 15, 2014 and EOT + ONE YEAR April 1, 2015 UND.... SVR!

 
Michaele


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Amanda ,  You are not alone, our prayers are with you and your mom ...... Michaele



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Brian1412


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thank you



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mallani


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Hi Amanda,

I'm very sorry for your loss. My heartfelt condolences.

I hope Mum's doctor has reported her condition to Gilead.

I would just like Members to be aware that Justme50's passing should not be attributed to '....complications from Interferon/Harvoni treatment'.

Certainly Interferon can cause low platelets, but this resolves when Interferon is stopped.

All patients with HepC have a risk of reduced platelets, and Chronic Thrombocytopaenic Purpura can be one of the autoimmune manifestations of HepC.

It is much more likely that the TTP was associated with the virus, despite probable SVR.

Harvoni is a new drug with unknown side-effects and interactions. Let's hope TTP is not one of the rare side-effects.



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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
Roey


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So sorry to hear about your mom. Just had my blood drawn today because Next week will be my 3 month end of treatment with Harvoni. However, my right leg is swollen with little red dots and I will absolutely have my dr. Check my blood for TTP. Without you writing to us I would have never known to ask for, or tell him about TTP. Thank you for the heads up. In my life, like I'm sure in many others nothing comes easy for us. Just take care of yourself and be strong. Your Mom is up in heaven looking over you. With Affection, Rosalie

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roey

 

 

 

58 y o female genotype 1a naive to treatment, 2-1-15 start Harvoni 
Brian1412


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Hi Amanda,

Again , I am sorry for the loss of your mother .  I wanted to send you some information just so you can  have a better understanding of what this rare disease is.  As you will see in the first link there are that have been working on it for about 10 years and this 2  Drs from this excellent Medical  Center and teaching  University, they have made huge advancements for many years for  a variety  of illnesses. The OSU The James is a fantastic , caring place for medical and research.  Who they are and what they have dedicated their careers to understanding TTP . As you will see in the link, there isn't a ton of people   available for this disease, but these Drs are working to change that to have a better understanding of the how and why.   Removed post as he is going to send his comments

 

Dr Cataland's contact info is on the page,  and please feel free to  e-mail him with any questions . I am certain he would be glad to . One thing I also noticed how long and  meticulous it has been  to find the patients for their database. 3,000 samples over 2 years doesn't seem like a lot, but it just goes to show how rare it is. I am certain that they could use  all the help they can get, so in remembrance of your mother I am going to ask him what they need and help them to get it.

Also, someone else at the James  alerted me to  a website that raises awareness, advocates etc ..   https://www.facebook.com/AnsweringTTPFoundation which looks like a good effort to also help awareness and  such . I will also contact them and donate in your mothers honor.

I know there is nothing that could replace your mother, but I bet she would be proud that you help others learn what this disease is and helping them through it. it's a decent start to make a bad song and making it better .  I will let you know what  the result are

The circus will say a prayer for you

 

Peace



-- Edited by Brian1412 on Wednesday 22nd of July 2015 10:21:25 PM

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MzmiffY


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Dear Amanda,

So very sorry and saddened to read this.

My thoughts and best wishes are with you at this extremely difficult time.

R.I.P Monica

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!

 
cayohueso1


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Dear Amanda, I am so sorry for you and you have my deepest condolences. Please know that I will be praying for you and my heart is with you. You have us here at the forum, and quite possibly your post be saving other lives. My deepest sympathies, Lori- Cayohueso1



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57 yrs old Genotype 1A. Failed treatment after 5 mos peg and victrelli cocktail. Needed 48 weeks.. Recovering addict and alcoholic. Active addiction for 40 years. Became infected in the late 70s or early 80s. Waiting for approval for 24 wks of Harvoni.
Matt Chris


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Hello Amanda

I was so sad to read of your mother passing, she was a valuable member of this forum. Our thoughts and prayers are with you and your family.

We also thank you for including the very important information regarding your chronicling her story and the hidden causes of her death, you may have saved future lives with your disclosure. Thank you for your mother and you personally.

matt 



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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
Jaded


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Condolences Amanda...wishing you comfort and thank you for thinking of us.

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64 year old EOT 10-28-15,SVR24 April 21 2016  ALT-12/AST-23 June '19 - fibroscan 6.9 F-0 July '19
Tess


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Dear Amanda,

My deepest condolences and thank you so much for thinking of us at such a difficult time.  This very sad information may save another's life.  You are a testament to your mother's caring nature.

Sincerely,

Tess



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HCV Gen 1a diagnosed 2001; Labs 11/13/14: VL 1.2 million IU/mL, ast 88, alt 111. Harvoni TX 12 weeks.  EOT - 2/18/15, VL UND & normal ast/alt.

4 wks after EOT, VL = UND; normal AST/ALT at 4, 8 and 14 weeks after EOT.  15 weeks after EOT = Undetectable!
Groupergetter


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Thank you Amanda for letting us know about your mother's passing and sharing information that may save another's life.  My sincere condolences to you and your family.  May God give you and your family the strength and peace to get through this trying time.  God Bless



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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.
malekula man


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Hello Amanda,

My condolences. RIP, Monica.

Thank you for this post. I have the same autoimmune problem with my platelets. Had Interferon Tx before and now finished Harvoni.

MM



-- Edited by malekula man on Tuesday 21st of July 2015 02:01:47 AM

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Harvoni Tx: Jan-Jun 2015 for 24 wks, SVR12, SVR24

PrevTx : relapser, Sovaldi +Peg+Riba for 12 wks, Jun-Sep 2014

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Tig


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Hello Amanda,

I'm so sorry to hear this sad news. What a shock to everyone. Monica was a good friend to many and gave freely of her time when she was here. She will me missed by us all.

Thank you for sharing the problems that caused her so much discomfort. I know she mentioned the overwhelming fatigue, but so many on treatment share the problem. I'm saddened to hear that the doctors found the problem too late to do something helpful. We have all been pioneers in the area of HCV treatment and research and your Mom was no different. She wanted to be free of this dreaded disease and tried valiantly to do so. Her loss, as tragic and sad as it is for you and your family, is not in vain. This will provide valuable information that I know will benefit all others. My deepest condolences to you and your family. God bless and may she rest in peace...



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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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Hello Amanda,

Oh dear, I`m so terribly sorry to hear this, what a dreadful shock.  You have my deepest sympathy, and my heart goes out to you and your family for your the very sad loss of your mother.

You`re right in saying that interferon can be a very rare cause of TTP, and I can see that your mother, Monica, had taken it in the past.  I haven`t come across any information to suggest that this could have been caused by the Harvoni treatment she had not long finished.  But you`re right that it is very new drug in real world settings and we haven`t yet got the long term data yet regarding potential serious complications.

Many, many thanks for taking the trouble to let us know, it can`t have been at all easy for you.  Monica had been an active and very supportive member here and was very well liked and appreciated.

Sending sincere condolences to you and your family.  Your kind consideration for our members is very much appreciated. Take good care.

Rest in Peace, dear Monica...

Jill



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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.

 

 
Ro


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Amanda,

Most heartfelt condolences and prayers to you and your family.  

Thank you for posting this unfortunate news.  Your kindness to us here is a testament to your mother's kindness.

May she rest in peace

Ro



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justme50


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This is Monica's daughter Amanda.  She started Harvoni in April and finished her 24 weeks.  During her treatment she started having pain in her hands and legs along with edema in her lower limbs.  She tested negative for hep 7 weeks out.  Her doctors could not figure out why she was having these other symptoms after multiple blood tests.  I finally had her admitted into the hospital June 19th due to extreme fatigue.  After being transported to UCLA ICU she passed on June 27th.  She had developed an autoimmune disease called thrombotic thrombocytopenia purpura (TTP).  I read online that it can be caused by interferon (she was on it twice) and other drugs like it.  There are no known cases (that I have found) from taking Harvoni, possibly there are no cases because it is a new drug?  The purpose of my post is to make everyone aware of this blood disorder that killed my mother.  It is so rare the doctors did not even test for it until it was too late for her.  Please if any of you experiance tingling in the hands or feet, swelling of your limbs, pain in your joints, or anything that is not right after or during treatment for hep c please be tested for TTP.  A tell tale sign in the blood work is a low platelet count. She has had multiple posts prior to her passing about her symptoms please look them up to see if I have left out anything.  Hopefully my post can save someone, god bless.



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G1A, F3, prev. tx 2012 for 28 weeks vic/riba/int. Started Harvoni Oct. 29, 2014 for 24 weeks, 1.5 mil., und at 4 weeks. EOT: 4/14/15.  One week EOT labs: und; 4 wk EOT und, 7wk EOT labs: und
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