Justme50 has passed away, complications from Interferon/Harvoni treatment
Bills said
Jul 26, 2015
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
wmlj1960 said
Jul 22, 2015
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.
Stormy said
Jul 22, 2015
My condolences also, my prayers are for you and your family.
Stormy
Greg D said
Jul 22, 2015
Amanda, sincere condolences from my family to yours. R.I.P. Monica
Michaele said
Jul 22, 2015
Amanda , You are not alone, our prayers are with you and your mom ...... Michaele
Brian1412 said
Jul 22, 2015
thank you
mallani said
Jul 22, 2015
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.
Roey said
Jul 21, 2015
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
Brian1412 said
Jul 21, 2015
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
MzmiffY said
Jul 21, 2015
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
cayohueso1 said
Jul 21, 2015
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
Matt Chris said
Jul 21, 2015
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
Jaded said
Jul 20, 2015
Condolences Amanda...wishing you comfort and thank you for thinking of us.
Tess said
Jul 20, 2015
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
Groupergetter said
Jul 20, 2015
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
malekula man said
Jul 20, 2015
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
Tig said
Jul 20, 2015
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...
Cinnamon Girl said
Jul 20, 2015
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
Ro said
Jul 20, 2015
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
justme50 said
Jul 20, 2015
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.
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
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.
My condolences also, my prayers are for you and your family.
Stormy
Amanda, sincere condolences from my family to yours. R.I.P. Monica
Amanda , You are not alone, our prayers are with you and your mom ...... Michaele
thank you
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.
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
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
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
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
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
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
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
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...
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
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
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.