Thanks Malcolm, interesting reading. Will need to revisit the article you reference when I have more time to absorb it's findings and conclusions. Towards the end of tx on S/O I started to notice some relief in neuropathy symptoms in lower legs. This would have been weeks 12-16 on and post tx. After this period the neuropathy returned at perhaps a slightly higher level. Ironically I had just commented to my wife tonight that I've noticed some improvement in my neuropathy the last 2 days. I am on day 115 of 168 Harvoni tx (hope this relief continues) Other symptoms and pains remain about the same (can you say insomnia) :)
I remain hopeful there will be noticeable improvements in other QOL factors realizing this may take time, Need that golden SVR first. It's always encouraging to read of other's post tx improvements in extra hepatic manifestations. Congrats to all who have slayed this dragon. May your days and nights be filled with renewed health, life, and happiness.
mallani said
Mar 4, 2015
Hi all,
This is an old thread, and many of the post-treatment issues will not be relevant with the new DAA's. As more patients achieve SVR, it is important to realize that some problems may remain.
I would love to see a new survey from the USA with data from SVR patients who used the new DAA's.
Meanwhile this is a good UK reference explaining effects of SVR on HRQOL (Health Related Quality of Life). Cheers.
I am 8 weeks post tx (relapse) S/O and having more pronounced arthritic issues in hands, knees, and hip areas. Energy level is also poor though I continue to work. Had labs drawn yesterday and while elevated ALT and AST remain in "normal levels" Platelet count at 170. I wasn't expecting my pcp to order hcv quantitative but she did. Still await results of this and INR/PT. i'll know better in a few days but it appears the virus remains somewhat subdued after tx. I'll follow-up as I know more. TGIF
hepcat60 said
Sep 11, 2013
I was invited to do a small trail at Mayo during that same time period. They said they were doing further trials on Cirrhotics. My Dr. recommended that I not do the trail since the drug was already available. Good advice!
mallani said
May 21, 2013
Hi Manny,
Sorry to hear about your post treatment problems.
I'm a bit confused about your treatment. You said you were on a trial with 4 other patients, using Peg., Riba and Incivek for 8 months, finishing in April 2012. That would mean you started treatment in August 2011.
Incivek was approved by the FDA in May, 2011. By then, all trials had finished, and Incivek was approved with strict guidelines. It could not be used on cirrhotics with a Child-Pugh score of 7 or above, and treatment was to be stopped if the 12 week VL was >1000 i.u./ml. Thus, I don't see how you could have been on a trial. Also, do you know your liver status at start of treatment ?. You said your levels improved slightly, but do you know your VL at week 12? It sounds as if you should have stopped all treatment then.
You are obviously cirrhotic, and in September 2012, you developed ascites. This means your liver has started to decompensate, which may be treatment related or may merely be progression of the disease. As Jill said, it is impossible to know whether your treatment accelerated this process. All the best.
ManMoon said
May 20, 2013
I just recently had my third trial treatment - Incivek/Ribasphere/Pegasys none of which were effective. I was initially told that after three months if there was no improvement on blood work the treatment would stop. Although my levels slightly improved it was decided to keep me on it longer, in short after 8 months of treatment it stopped with no improvement.
It was April of 2012 i finished the trial and by September of the same year i had declined in health drastically. I developed liver ascites (fluid in the stomach). I have now been told that within the year i will have to have a liver transplant.
What concerns me is up until my treatment started my levels were pretty much stable and suffered no serious health issues. It was only until AFTER the treatment did my health take a serious nose dive.
I was only 1 of 5 patients or so that were on this Incivek/Ribasphere/Pegasys trial treatment and side effects or long term side effects were not available as we were the group that would determine the stats.
I can't help but think that the treatment had adverse effects that reeked havoc and was the cause of my decline in health. Of course the doctors are not going to admit this but i did mention it to my General MD who agreed that if the treatment was the cause of my health failing it would never be told.
I can not prove that the treatment caused my current health issues but it is a burning question i have that i may never know the true answer to.
I am not anti-trial treatment and know for some it works wonders but i am curious if anyone has taken this latest treatment and had similar results afterwards.
Cinnamon Girl said
May 20, 2013
Hi Manny, welcome. Sorry to hear about your health problems. So this was a trial for people with cirrhosis then, I take it? We aren`t able to tell you whether the incivek treatment itself caused your condition to worsen, but it seems quite possible that your liver disease was already beginning to deteriorate before you started your treatment. And as you didn`t respond to the treatment, or to your 2 previous attempts, the medications woudn`t have prevented the cirrhosis from becoming more advanced. Do you know what your biopsy result was before you did the latest treatment?
All the best of luck for your future and with your transplant. Hope you don`t have to wait too long. ~ Jill
LadyAlaise said
Dec 5, 2012
ummmm I signed a few papers but don't recall seeing one that stated I might not be able to bear children! One of the other reasons (aside from the OBVIOUS ones) of doing treatment was I would be like to have children who won't possibly be infected or be a carrier of this disease~
I am sorry for your pain. I took Pegasys-- Interferon/Ribavirin medication for Hep-C from June 2003 thru November 2003 and I have symptoms that have followed me since then. They have taken my ability to work away. the symptoms are getting worse with age. I have tried to bring it to the attention of the Professional people and they have just shined me on but I have been working with others that have been affected and we have a team of people that can verify permanent symptoms they know they have gotten from this medication. If you would like to be a part of this let me know. Here is my contact information:
Craig Harris
Gooding, ID
Age: 50 at the time of medication-age now 58
Medication Period: 6-2003 thru 11-2003(6 months)
Medication Packet from Roche-(Pegasys}
James10500 said
Jan 21, 2011
Dbone- your spelling wasn't off they are two different things.
I'm very sorry about your long term issues. I as a fellow hepper wish you the best, and hope we all "get our lives back".
Best wishes,
James
-- Edited by James10500 on Friday 21st of January 2011 06:31:48 PM
dogbone said
Jan 21, 2011
Hi, thanks for the info. i'm sorry if my spelling is off. i did'nt believe i needed to be so specific, just know when they run tests for kidney function they check for creatinine levels and refer to it as protein in urine. the answer i am looking for is if hep c or meds that cause long term problems? Most doctors will say neither. So anyhow thanks for the info I appreciate all I can get. Especially if someone can tell me how to reverse the terrible and chronic pain I've had for 9 years since my first shot of interferon. I was not informed in any way this could happen from either.
Sincerely DB
James10500 said
Jan 20, 2011
Dogbone where was your study published I'd love to read it. Here are a few studies done by medical researches.
fwiw creatinine is the break down product of creatine. And creatine is not a protein.
-- Edited by James10500 on Friday 21st of January 2011 02:32:31 AM
- Edited by Cinnamon Girl to remove defunct links
-- Edited by Cinnamon Girl on Tuesday 22nd of October 2013 10:11:21 AM
dogbone said
Jan 20, 2011
Hi Steph,
Thanks for info. I never saw or would never sign a form like this. You are very knowledgable. However I have sudied Anatomy and Physiology. From my personel study, experience, and research here is what I have found. Hep C virus does not affect CNS. The liver will regenerate new tissue over the scarred when virus is cleared. The only permenent damage can be to the kidneys which is called glomerular nephritis. You can live indefinitely with this without symptoms or further damage, accept foam or bubbles in urine which is creatinine protein. Stay away from NSAID's. they can do a number on the kidneys.
We will discuss the meds later. Like you have noted they are all that we actually are aware of yet, that clears the virus. Keep searching for answers and you will find.
DB
greenqueen said
Jan 20, 2011
The subject of of long term side effects after treatment has recently been raised by many people and really does need to be addressed.
According to some recent studies, this is more widespread than we have been led to believe. One of the main issues is that the choice to do treatment should be based on "Informed Consent", which means that the patient should be told ALL the facts before they make a decision. It appears that this is not the case and many people are/were being told that they would feel "wonderful" after treatment (myself included).
It needs to be mentioned that the Hep C virus is not just a liver disease and affects the Central Nervous System and many other organs, thus triggering many other illnesses and chronic conditions. With this in mind, if a person has been infected for many years, then the virus has had plenty of time to cause a lot of damage, which in many cases, is likely to be permanent. When a person does TX, the aim is to eradicate the virus, so it cannot cause any further damage. It therefore does not make sense to tell someone they will feel "wonderful", post-tx, when they may have permanent health issues, due to the virus.
Many doctors are now acknowledging that their patient's problems after treatment are indeed connected to the meds. The only group of health professionals who seem reluctant to admit this, are the one who prescribe them!
Someone sent me the following document a few weeks ago and I'd be interested to know if anyone had to sign this or a similar one, before they began treatment:
Thanks Malcolm, interesting reading. Will need to revisit the article you reference when I have more time to absorb it's findings and conclusions. Towards the end of tx on S/O I started to notice some relief in neuropathy symptoms in lower legs. This would have been weeks 12-16 on and post tx. After this period the neuropathy returned at perhaps a slightly higher level. Ironically I had just commented to my wife tonight that I've noticed some improvement in my neuropathy the last 2 days. I am on day 115 of 168 Harvoni tx (hope this relief continues) Other symptoms and pains remain about the same (can you say insomnia) :)
I remain hopeful there will be noticeable improvements in other QOL factors realizing this may take time, Need that golden SVR first. It's always encouraging to read of other's post tx improvements in extra hepatic manifestations. Congrats to all who have slayed this dragon. May your days and nights be filled with renewed health, life, and happiness.
Hi all,
This is an old thread, and many of the post-treatment issues will not be relevant with the new DAA's. As more patients achieve SVR, it is important to realize that some problems may remain.
I would love to see a new survey from the USA with data from SVR patients who used the new DAA's.
Meanwhile this is a good UK reference explaining effects of SVR on HRQOL (Health Related Quality of Life). Cheers.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3816051/
I am 8 weeks post tx (relapse) S/O and having more pronounced arthritic issues in hands, knees, and hip areas. Energy level is also poor though I continue to work. Had labs drawn yesterday and while elevated ALT and AST remain in "normal levels" Platelet count at 170. I wasn't expecting my pcp to order hcv quantitative but she did. Still await results of this and INR/PT. i'll know better in a few days but it appears the virus remains somewhat subdued after tx. I'll follow-up as I know more. TGIF
I was invited to do a small trail at Mayo during that same time period. They said they were doing further trials on Cirrhotics. My Dr. recommended that I not do the trail since the drug was already available. Good advice!
Hi Manny,
Sorry to hear about your post treatment problems.
I'm a bit confused about your treatment. You said you were on a trial with 4 other patients, using Peg., Riba and Incivek for 8 months, finishing in April 2012. That would mean you started treatment in August 2011.
Incivek was approved by the FDA in May, 2011. By then, all trials had finished, and Incivek was approved with strict guidelines. It could not be used on cirrhotics with a Child-Pugh score of 7 or above, and treatment was to be stopped if the 12 week VL was >1000 i.u./ml. Thus, I don't see how you could have been on a trial. Also, do you know your liver status at start of treatment ?. You said your levels improved slightly, but do you know your VL at week 12? It sounds as if you should have stopped all treatment then.
You are obviously cirrhotic, and in September 2012, you developed ascites. This means your liver has started to decompensate, which may be treatment related or may merely be progression of the disease. As Jill said, it is impossible to know whether your treatment accelerated this process. All the best.
I just recently had my third trial treatment - Incivek/Ribasphere/Pegasys none of which were effective. I was initially told that after three months if there was no improvement on blood work the treatment would stop. Although my levels slightly improved it was decided to keep me on it longer, in short after 8 months of treatment it stopped with no improvement.
It was April of 2012 i finished the trial and by September of the same year i had declined in health drastically. I developed liver ascites (fluid in the stomach). I have now been told that within the year i will have to have a liver transplant.
What concerns me is up until my treatment started my levels were pretty much stable and suffered no serious health issues. It was only until AFTER the treatment did my health take a serious nose dive.
I was only 1 of 5 patients or so that were on this Incivek/Ribasphere/Pegasys trial treatment and side effects or long term side effects were not available as we were the group that would determine the stats.
I can't help but think that the treatment had adverse effects that reeked havoc and was the cause of my decline in health. Of course the doctors are not going to admit this but i did mention it to my General MD who agreed that if the treatment was the cause of my health failing it would never be told.
I can not prove that the treatment caused my current health issues but it is a burning question i have that i may never know the true answer to.
I am not anti-trial treatment and know for some it works wonders but i am curious if anyone has taken this latest treatment and had similar results afterwards.
Hi Manny, welcome. Sorry to hear about your health problems. So this was a trial for people with cirrhosis then, I take it? We aren`t able to tell you whether the incivek treatment itself caused your condition to worsen, but it seems quite possible that your liver disease was already beginning to deteriorate before you started your treatment. And as you didn`t respond to the treatment, or to your 2 previous attempts, the medications woudn`t have prevented the cirrhosis from becoming more advanced. Do you know what your biopsy result was before you did the latest treatment?
All the best of luck for your future and with your transplant. Hope you don`t have to wait too long. ~ Jill
I found you Steff, on the link you sent me.
Craig Harris
Gooding, ID
Email: c.harri11@live.com
Age: 50 at the time of medication-age now 58
Medication Period: 6-2003 thru 11-2003(6 months)
Medication Packet from Roche-(Pegasys}
I am sorry for your pain. I took Pegasys-- Interferon/Ribavirin medication for Hep-C from June 2003 thru November 2003 and I have symptoms that have followed me since then. They have taken my ability to work away. the symptoms are getting worse with age. I have tried to bring it to the attention of the Professional people and they have just shined me on but I have been working with others that have been affected and we have a team of people that can verify permanent symptoms they know they have gotten from this medication. If you would like to be a part of this let me know.
Here is my contact information:
Craig Harris
Gooding, ID
Age: 50 at the time of medication-age now 58
Medication Period: 6-2003 thru 11-2003(6 months)
Medication Packet from Roche-(Pegasys}
I'm very sorry about your long term issues. I as a fellow hepper wish you the best, and hope we all "get our lives back".
Best wishes,
James
-- Edited by James10500 on Friday 21st of January 2011 06:31:48 PM
thanks for the info. i'm sorry if my spelling is off. i did'nt believe i needed to be so specific, just know when they run tests for kidney function they check for creatinine levels and refer to it as protein in urine. the answer i am looking for is if hep c or meds that cause long term problems? Most doctors will say neither.
So anyhow thanks for the info I appreciate all I can get. Especially if someone can tell me how to reverse the terrible and chronic pain I've had for 9 years since my first shot of interferon. I was not informed in any way this could happen from either.
Sincerely
DB
Dogbone where was your study published I'd love to read it. Here are a few studies done by medical researches.
http://www.hepctrust.org.uk/Resources/HepC/Migrated%20Resources/Documents/SimonTaylor-RobinsonPresentation.pdf
fwiw creatinine is the break down product of creatine. And creatine is not a protein.
-- Edited by James10500 on Friday 21st of January 2011 02:32:31 AM
- Edited by Cinnamon Girl to remove defunct links
-- Edited by Cinnamon Girl on Tuesday 22nd of October 2013 10:11:21 AM
According to some recent studies, this is more widespread than we have been led to believe. One of the main issues is that the choice to do treatment should be based on "Informed Consent", which means that the patient should be told ALL the facts before they make a decision. It appears that this is not the case and many people are/were being told that they would feel "wonderful" after treatment (myself included).
It needs to be mentioned that the Hep C virus is not just a liver disease and affects the Central Nervous System and many other organs, thus triggering many other illnesses and chronic conditions. With this in mind, if a person has been infected for many years, then the virus has had plenty of time to cause a lot of damage, which in many cases, is likely to be permanent. When a person does TX, the aim is to eradicate the virus, so it cannot cause any further damage. It therefore does not make sense to tell someone they will feel "wonderful", post-tx, when they may have permanent health issues, due to the virus.
Many doctors are now acknowledging that their patient's problems after treatment are indeed connected to the meds. The only group of health professionals who seem reluctant to admit this, are the one who prescribe them!
Someone sent me the following document a few weeks ago and I'd be interested to know if anyone had to sign this or a similar one, before they began treatment:
http://www.digestivehealthconsultants.org/_media/forms/Hepatitis_C.pdf
I'll be starting a poll soon, to ascertain if people were made aware of certain possible long term side effects of treatment.
Love Steff xx