Aa
Post S&O since June 27th and all is not so great
Well, I have actually been feeling progressively worse over the past two weeks and am not real sure what to do--paralyzed by fear, might be a good description for where I am?
Today is Friday, so I'll think about what to do. My big, did S&O work test is Sep 27th. Thing is, if feeling worse, fatigue and pain, means stupid virus is back, I don't know what the work up is and how much time is needed for Round Two?
So, I do know several of you are waiting on Round Two which is slated for October (next month). Have any of you guys had to start anew with tests and such for round 2 of the new sovaldi drug? I'm trying to figure out if I should wait til the 27th for the SVR test post 3 months, or call my liver doc and let them know all is not so great?
A little background: I did just start teaching at the university again. I have three classes, 2 face to face and one online (personally, the online takes more work!). Anyway this is week two and after meeting my Tues class, I came straight home and went right to bed! My fatigue has taken over, joint pain has increased and vertigo has gotten much much worse (stress will do that).
Can anybody else tell me how they've felt with a SVR versus failure to sustain? If there's an involved work up for around 2 (if what I think is happening, virus back), then sooner rather than later might be best. If it's all up in the air, then waiting for the official three month test seems to be the way to go. I haven't even worked up the nerve to call my doctor. I hate being a paranoid bother, and it seems this whole process of "We don't know that much," from docs is so frustrating. Anyway, community support? Weigh in? Thanks so much! Dbzc
Today is Friday, so I'll think about what to do. My big, did S&O work test is Sep 27th. Thing is, if feeling worse, fatigue and pain, means stupid virus is back, I don't know what the work up is and how much time is needed for Round Two?
So, I do know several of you are waiting on Round Two which is slated for October (next month). Have any of you guys had to start anew with tests and such for round 2 of the new sovaldi drug? I'm trying to figure out if I should wait til the 27th for the SVR test post 3 months, or call my liver doc and let them know all is not so great?
A little background: I did just start teaching at the university again. I have three classes, 2 face to face and one online (personally, the online takes more work!). Anyway this is week two and after meeting my Tues class, I came straight home and went right to bed! My fatigue has taken over, joint pain has increased and vertigo has gotten much much worse (stress will do that).
Can anybody else tell me how they've felt with a SVR versus failure to sustain? If there's an involved work up for around 2 (if what I think is happening, virus back), then sooner rather than later might be best. If it's all up in the air, then waiting for the official three month test seems to be the way to go. I haven't even worked up the nerve to call my doctor. I hate being a paranoid bother, and it seems this whole process of "We don't know that much," from docs is so frustrating. Anyway, community support? Weigh in? Thanks so much! Dbzc
Sorry to be so late in responding, but I didn't get a notice of replies. Otter, sorry you had to do that treatment, that combo must have been brutal. I just get really upset that doctors are not straight about the sides. Of course, they only get their info from the drug reps as well as kickbacks for putting people on those expensive treatments. Like they told me "only flu like" symptoms.
Diana, glad you cured the cryo, but I am on a cyro group on Facebook, and several have treated and it has come back. Sorry that you are still having joint pain. I have heard TUMERIC helps that a great deal. My holisitc doc said I could take 3,000 mg a day, it is safe. But, it sounds like your energy is good now. Judi
Diana, glad you cured the cryo, but I am on a cyro group on Facebook, and several have treated and it has come back. Sorry that you are still having joint pain. I have heard TUMERIC helps that a great deal. My holisitc doc said I could take 3,000 mg a day, it is safe. But, it sounds like your energy is good now. Judi
I have cured the cryo the moment I treated HCV. Untreated cryo can destroy small vessels in the kidney. I treated and still not feeling great 12 months post tx. Joint pain but now I can walk 16 or 18000 steps a day and do insane hours at work. But the joint pain I experience is concerning.
I'm one of the 4% and wish I'd been better informed pre treatment.I had no liver damage or side effects of the virus I'd been carrying for 20 years.I'd swap the cryo for my side effects from treatment any day.
Thank you for that story! I have been monitoring support groups for 20 years now, and I know many people were hurt by interferon, some really serious life changing side effects. Now I read about the new treatments even causing sides. It makes sense, if the treatment cures or kills HCV, what else will it do. My life isn't bad now, no constant pain, good energy. I do have cryo vasculitiis with a brown spotted rash on my legs, that's about it. I would rather live with that than constant fatigue, etc. I get tests for liver cancer and ultra sounds. The doctors say when you treat you will cure the cryo vasculitis, but that is not always true. I haven't heard of anyone curing it yet. I almost think that the whole HCV thing is over-hyped anyway. Just look at the $$$ involved in the treatment. But, I will think about your story, so thanks again. How are you doing?
my best friend's grandmother died aged 93,she contracted hepc as a missionary 50 years previously and her death was unrelated.Only 5% of women go on to develop liver cancer,4% of patients suffer long term side effects from interferon/ribavirin treatment-you do the maths!
I saw your post earlier today, and it has been haunting me. First of all, I am so sorry for your loss of your mom. She sounds like a great, very positive person. She had to be that way to even agree to the treatment. I am also very angry that a doctor would put an 80 year old on treatment for HCV. Did he think she that the Hepatitis was bothering her in some way? I don't get it.
I have had HCV for over 45 years now, and haven't treated due to fear of the treatment. I am here monitoring the board to learn about how others are coping with the new treatments. But, my thoughts, are that if I have lived this long with it with, then why bother and take a chance that I will get worse or new symptoms. I have to support myself, and could not do so if I were sick.
Over the years, I have had many doctors try to talk me into treatment, way back when there was only interferon. Some have gotten downright nasty when I refused. I was always suspicious about doctors getting some financial reward for putting patients on treatment, like some kickback or something. Otherwise, why did they continue to use interferon for years knowing it was damaging people. There is a website, ProPublica.com, that has a section on doctors that have accepted payments or perks from drug companies. You could look up this doctor. The last family doctor I saw 2 years ago told me in a harsh voice, "you are doing to die without treatment." Well, he has been wrong so far.
A death of a loved one is hard enough, without having it end this way. It gets so complicated when you feel there was malpractice involved. The anger involved in a needless death is very hard to bear. I don't blame you for wanting to sue. My thoughts and prayers are with you.
Judi
I have had HCV for over 45 years now, and haven't treated due to fear of the treatment. I am here monitoring the board to learn about how others are coping with the new treatments. But, my thoughts, are that if I have lived this long with it with, then why bother and take a chance that I will get worse or new symptoms. I have to support myself, and could not do so if I were sick.
Over the years, I have had many doctors try to talk me into treatment, way back when there was only interferon. Some have gotten downright nasty when I refused. I was always suspicious about doctors getting some financial reward for putting patients on treatment, like some kickback or something. Otherwise, why did they continue to use interferon for years knowing it was damaging people. There is a website, ProPublica.com, that has a section on doctors that have accepted payments or perks from drug companies. You could look up this doctor. The last family doctor I saw 2 years ago told me in a harsh voice, "you are doing to die without treatment." Well, he has been wrong so far.
A death of a loved one is hard enough, without having it end this way. It gets so complicated when you feel there was malpractice involved. The anger involved in a needless death is very hard to bear. I don't blame you for wanting to sue. My thoughts and prayers are with you.
Judi
Hi there my friend, thank you, you are remembering correctly.
As the medical community found other therapies without interferon I posted a suggestion that we be allowed to have a Post Treatment Forum to help people who were having problems recovering after tx.
The thought was to keep this separate from the HCV Forum so as not to scare anyone .I thought it would be nice to have a place to come to to share concerns, problems, maybe even solutions.. I am grateful to MH for creating this forum.
Everyone's body is different, some people have problems with their thyroid and don't know it. Others may be suffering from vitamin deficiencies. Pooh suffered from a problem that was diagnosed after tx. Tx did not cause it. She encourages others to go to a Rheumatologist to be tested for auto immune problems. I had a problem with my thyroid before treating but then after it got worse.
I had horrible leg cramps and took calcium magnesium potassium and zinc to help myself.
Others may have low estrogen or low testosterone.
Take Care
Dee
As the medical community found other therapies without interferon I posted a suggestion that we be allowed to have a Post Treatment Forum to help people who were having problems recovering after tx.
The thought was to keep this separate from the HCV Forum so as not to scare anyone .I thought it would be nice to have a place to come to to share concerns, problems, maybe even solutions.. I am grateful to MH for creating this forum.
Everyone's body is different, some people have problems with their thyroid and don't know it. Others may be suffering from vitamin deficiencies. Pooh suffered from a problem that was diagnosed after tx. Tx did not cause it. She encourages others to go to a Rheumatologist to be tested for auto immune problems. I had a problem with my thyroid before treating but then after it got worse.
I had horrible leg cramps and took calcium magnesium potassium and zinc to help myself.
Others may have low estrogen or low testosterone.
Take Care
Dee
I can't remember exactly how this Post-Treatment Issues forum started but I do believe that Dee had something to do with it.
But yes scottie you are correct, the admins certainly locked down many threads in the past that contained negative stories. I think that they could no longer turn a blind eye when the Mayo Clinic finally labeled long term side effects with Post-Interferon Syndrome.
I don't remember a member being kicked off the site for explaining a situation!
I do not think I would want to be part of a forum that would take that kind of action!
But yes scottie you are correct, the admins certainly locked down many threads in the past that contained negative stories. I think that they could no longer turn a blind eye when the Mayo Clinic finally labeled long term side effects with Post-Interferon Syndrome.
I don't remember a member being kicked off the site for explaining a situation!
I do not think I would want to be part of a forum that would take that kind of action!
This forum, too, has kicked off a lot of true stories that needed to be told, unfortunately. Many bad accounts of treatment have been wiped off of here over the years.
The moderators finally started this "Post-Treatment Issues" forum to allow more discussion of them.
The moderators finally started this "Post-Treatment Issues" forum to allow more discussion of them.
Her cancer treatment was in 2007. She was in remission from cancer. We are still not sure why the doctor offered her the Solvadli Olysio. We assumed it was for the good. We should have asked more questions, but we had no idea she would get that sick. By the time she started to show symptoms 6 weeks later, it was too late, we never got her back to health.
I was kicked off Lucinda Porter's hepmag forum by telling my story. Noone wants to hear this happened to my Mom. I was banned from that forum forever, regardless of the people that sent me private messages and supported me.
Lucinda Porter is an RN... who had hep C herself? Why would she ban me from such a forum to help allow me to heal. It's horrible.
We can never get my Mom back. ... but I can help others and can assist when I see symptoms get as bad as her.
Hugs and prayers to everyone who is suffering.
I was kicked off Lucinda Porter's hepmag forum by telling my story. Noone wants to hear this happened to my Mom. I was banned from that forum forever, regardless of the people that sent me private messages and supported me.
Lucinda Porter is an RN... who had hep C herself? Why would she ban me from such a forum to help allow me to heal. It's horrible.
We can never get my Mom back. ... but I can help others and can assist when I see symptoms get as bad as her.
Hugs and prayers to everyone who is suffering.
Not everyone can take the same drugs. Some people are allergic. It sounds like her previous cancer compromised her system. There are too many factors here to point it to one thing i.e. S/O. Why was she on Hep treatment when she just got done with cancer treatment? Her body needed to heal from the cancer treatment first and that is where one has to be proactive and call the shots. Could it have been too soon for her to go on S/O? Doctors are not God's. They can only assist you in your taking care of yourself and managing the illness. Her age had a big part to play in her death along with having cancer. What other meds was she on? There are too many factors that haven't been disclosed on the forum. This would be next to impossible to prove in court. I'd be surprised if anyone even took the case.
Never-the-less, I hope you heal from your loss. Your nerves are raw right now. Take it easy. Read some good books by Katherine Kubler-Ross on death.
Never-the-less, I hope you heal from your loss. Your nerves are raw right now. Take it easy. Read some good books by Katherine Kubler-Ross on death.
These meds are horrible. The suffering they cause is unbelievable.
I'm so sorry about your mother. What was her doctor thinking. My God, the money the American medical system wastes and the harms it causes....
I'm so sorry about your mother. What was her doctor thinking. My God, the money the American medical system wastes and the harms it causes....
I am almost six mis post EOT and still feel like @&$#!
I'm on Lactulose and an antibiotic for HE. Mrmory not working. Brain fuzzy. Headaches now. No appetite, but gaining fluid. I got rid of hep C and have never felt worse? The doc thinks I might have screwed up my diet and had too much protein via kefir and raw protein shakes. That would be maybe 3 times a week. Today, I had tea, toast, some sesame seed stuff and well that's it and this is a typical day. I see a nutritionist soon, hopefully that will change some things. My doc said another 6 to 8 months to clear these drugs. I do not like being like this. I can't even drive because of vertigo and my fatigue has mr out around 4 pm...then up and down the entire night. Ugh!
I'm on Lactulose and an antibiotic for HE. Mrmory not working. Brain fuzzy. Headaches now. No appetite, but gaining fluid. I got rid of hep C and have never felt worse? The doc thinks I might have screwed up my diet and had too much protein via kefir and raw protein shakes. That would be maybe 3 times a week. Today, I had tea, toast, some sesame seed stuff and well that's it and this is a typical day. I see a nutritionist soon, hopefully that will change some things. My doc said another 6 to 8 months to clear these drugs. I do not like being like this. I can't even drive because of vertigo and my fatigue has mr out around 4 pm...then up and down the entire night. Ugh!
I wrote again in a journal that I think you mum had an auto-immune response...as in rejected the medication. I also wrote why I did these meds and why I should have done these meds sooner!
I still do not feel good. It's a fight to be positive. I'm on Lactulose and the antibiotic and my memory has dropped again. Fatigue up again. I think I screwed up my diet with too much protein and I really do not like the idea the rest of my life will be tinkering with meds. This is precisely why I said I would never have a transplant. I dislike medication and feeling like my life is under a medical microscope. We'll see, but this is not what I wanted for my "life". Primarily because I do not feel like I am living.
I am in awe of of all those who can handle horrific symptoms and side effects to hoping for a treatment, to fighting for one's life. I don't know if I'll ever be comfortable with what's happening to me. I can hope the diet and drugs make things better. I honestly do not know what else to think about?
Good luck and best to those who manage to deal and live with this.
I still do not feel good. It's a fight to be positive. I'm on Lactulose and the antibiotic and my memory has dropped again. Fatigue up again. I think I screwed up my diet with too much protein and I really do not like the idea the rest of my life will be tinkering with meds. This is precisely why I said I would never have a transplant. I dislike medication and feeling like my life is under a medical microscope. We'll see, but this is not what I wanted for my "life". Primarily because I do not feel like I am living.
I am in awe of of all those who can handle horrific symptoms and side effects to hoping for a treatment, to fighting for one's life. I don't know if I'll ever be comfortable with what's happening to me. I can hope the diet and drugs make things better. I honestly do not know what else to think about?
Good luck and best to those who manage to deal and live with this.
oh gosh I do feel for you. dead right it was the medicine. what on earth was he thinking of putting her on hcv treatment. I do hope you find some resolution.
We have asked ourselves this question over and over. The only reason we can come up with is that our Mom was super healthy and super nice and was up for anything :( Of course at the time, no one would ever guess this would happen. He probably thought she was a good candidate because she was tenacious enough to go through the treatment, and had been his patient for 15 years. I remember in July when she was hospitalized he was in the room with some other doctors and he was just leaning against the wall staring at her, like 'what have I done'. I said to him, 'do you think this is from the medicine', and he stared at me hard and said "it's not because of the medicine". I said what else could it be then, she was fine before all of this and they can't find anything wrong. He never came to see her after that and never came to see her at her 2nd visit to the hospital in October when she had her stroke and died.
I will be filing a law suit against him. Even if I don't win, I don't want him to have the last word on my Mom. At one of her appointments, she was having pain in her left side... and he was supposedly done with her appointment, and walked out. She was in the middle of asking him 'wait, my pain in my side.. I want".. and he just walked out on her and never returned. I hate that jerk. I hope he pays... but even so, nothing will bring our Mom back :(
I will be filing a law suit against him. Even if I don't win, I don't want him to have the last word on my Mom. At one of her appointments, she was having pain in her left side... and he was supposedly done with her appointment, and walked out. She was in the middle of asking him 'wait, my pain in my side.. I want".. and he just walked out on her and never returned. I hate that jerk. I hope he pays... but even so, nothing will bring our Mom back :(
I have to say that my heart is breaking for you.
I don't know why a doctor would put an 80 year old on HCV tx.
I am so damn sorry for what has happened to you.
What kind of doctor was he?
I tried last night to find information for you after I saw your post under Cowriters journal.
I will continue to look.
I don't know why a doctor would put an 80 year old on HCV tx.
I am so damn sorry for what has happened to you.
What kind of doctor was he?
I tried last night to find information for you after I saw your post under Cowriters journal.
I will continue to look.
You and your family have my deepest sympathy on the passing of your mother.
I am not sure what kind of doctor your mother was seeing for her HepC treatment but this doctor certainly wasn't following the policy of "Do no harm"!
I don't know the details of your mothers medical history and it seems that this doctor did not either! I am sorry to hear that you were kicked off of other forums and I hope that you are welcomed here.
Just as an aside, and this is not in any way connected to what your family has gone thru ... we thought we had a great case against the hospital that allowed an accident to happen with my mother, who was about 15 years younger than your mother at the time...
A fantastic lawyer took a lot of time to go over the case, had a nurse look over it all, etc... came back to us saying that we would definitely win except the award amount would be insufficient with all the back and forth!
I would try to get this horrible doctor removed but that is nearly impossible as well. I have tried that also - one nearly had my mother held kidnapped for a number of weeks trying to cover his botched feeding tube work! The investigation was done by a newbie who had not even gotten her nursing license yet. It really is a joke!
I do hope that you find some peace after all this. I am not very knowledgable about the specific treatment your mother was on but if you ask a specific question - starting a new topic by hitting the POST A QUESTION button - I am sure someone will help you out.
frank
I am not sure what kind of doctor your mother was seeing for her HepC treatment but this doctor certainly wasn't following the policy of "Do no harm"!
I don't know the details of your mothers medical history and it seems that this doctor did not either! I am sorry to hear that you were kicked off of other forums and I hope that you are welcomed here.
Just as an aside, and this is not in any way connected to what your family has gone thru ... we thought we had a great case against the hospital that allowed an accident to happen with my mother, who was about 15 years younger than your mother at the time...
A fantastic lawyer took a lot of time to go over the case, had a nurse look over it all, etc... came back to us saying that we would definitely win except the award amount would be insufficient with all the back and forth!
I would try to get this horrible doctor removed but that is nearly impossible as well. I have tried that also - one nearly had my mother held kidnapped for a number of weeks trying to cover his botched feeding tube work! The investigation was done by a newbie who had not even gotten her nursing license yet. It really is a joke!
I do hope that you find some peace after all this. I am not very knowledgable about the specific treatment your mother was on but if you ask a specific question - starting a new topic by hitting the POST A QUESTION button - I am sure someone will help you out.
frank
My Mom was on Solvadi/Olysio. She was 80. Her doctor put her on it in April. She was in remission from Lymphoma. 6 weeks into treatment she got really sick. 12 weeks she was sicker and couldn't walk. The doctors couldn't find out what was wrong. We were hysterical going to doctors, blood test, bone marrows, scans, nothing was coming up.
End of July she collapsed at home and was hospitalized. They found blood viscosity, her blood was thick, etc, etc. She had plasmapheresis and platelet transfusion and was discharged. She had weekly blood draws and had bi weekly platlet transfusions cause she could not keep her platelet count up. She was bleeding from her gums and nose all the time. It was horrible. She couldn't sleep, she needed a walker, she no longer drove. When we look back at the summer now we realize she was not getting better, in fact she was dying :(
In October she was hospitalized again and needed plasmapherisis. On October 6 she was diagnosed with Waldenstrom, a type of cancer. She was so excited to finally have a diagnosis.
That same night, while still having the port in her neck for the plasmapheris, she had a massive stroke to her brainstem. We all rushed to the hospital and were able to see her awake for a little while trying to talk, etc... she was aware of her right side being paralyzed, etc.. it was a nightmare. She started to 'fall asleep' we thought but really she was losing consciousness.
She died 10/13/14.
We are in a lot of pain and grieving and we have come to believe in hindsight that yes this medicine compromised her auto immune system so much that another form of cancer returned. At 80 years old she never rebounded. Prior to treatment she was an active and independent 80 year old.
We are heartbroken and mad. Why that doctor put her on Solvadi and Olysio at 80yo we will never know. I've been kicked off of forums telling my story. Noone wants to hear the truth of my Mom. I'm sorry we don't have a positive experience to share, but perhaps when I was desperate looking for answers on the forums and saw a story like Mom, we would have had more information and could have saved our Mom.
These drugs are not to be messed around with. I'm so glad to hear what your sister wrote about the auto immune being compromised.. it gives us validation that this in fact happened to our Mom.
Thank you.
End of July she collapsed at home and was hospitalized. They found blood viscosity, her blood was thick, etc, etc. She had plasmapheresis and platelet transfusion and was discharged. She had weekly blood draws and had bi weekly platlet transfusions cause she could not keep her platelet count up. She was bleeding from her gums and nose all the time. It was horrible. She couldn't sleep, she needed a walker, she no longer drove. When we look back at the summer now we realize she was not getting better, in fact she was dying :(
In October she was hospitalized again and needed plasmapherisis. On October 6 she was diagnosed with Waldenstrom, a type of cancer. She was so excited to finally have a diagnosis.
That same night, while still having the port in her neck for the plasmapheris, she had a massive stroke to her brainstem. We all rushed to the hospital and were able to see her awake for a little while trying to talk, etc... she was aware of her right side being paralyzed, etc.. it was a nightmare. She started to 'fall asleep' we thought but really she was losing consciousness.
She died 10/13/14.
We are in a lot of pain and grieving and we have come to believe in hindsight that yes this medicine compromised her auto immune system so much that another form of cancer returned. At 80 years old she never rebounded. Prior to treatment she was an active and independent 80 year old.
We are heartbroken and mad. Why that doctor put her on Solvadi and Olysio at 80yo we will never know. I've been kicked off of forums telling my story. Noone wants to hear the truth of my Mom. I'm sorry we don't have a positive experience to share, but perhaps when I was desperate looking for answers on the forums and saw a story like Mom, we would have had more information and could have saved our Mom.
These drugs are not to be messed around with. I'm so glad to hear what your sister wrote about the auto immune being compromised.. it gives us validation that this in fact happened to our Mom.
Thank you.
Hi I am so happy to hear you are SVR, that is wonderful news and will help others. (I saw it on your status)
It does take time to feel better after tx.
Take Care
It does take time to feel better after tx.
Take Care
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