I don't think it's fair to accuse doctors of indifference for the longterm effects of HepC and treatment. They are well aware of them. It's a very complex subject and deserves more research. The long list of possible side effects of HepC and Interferon treatment are well known. There is also a similar long list of the effects of aging. HepC patients are highly attuned to their bodies and are ready to blame the disease and/or interferon for all post Rx woes. Sure, HepC or interferon may play a part, but so what. There's nothing a Hepatologist can do about muscle /joint pains etc. If SVR is obtained, they have done their job, and the patient has been spared a possibly miserable death from liver failure or HCC. I have read most post Rx surveys, and I'm very aware of the negative comments from many patients.
Patients often forget pre-existing problems. They also forget that 60 year olds will have mutiple medical problems compared to 50 year olds. It will be interesting to see how the interferon-free patients fare. I would not be surprised if a good number have the same post Rx problems we have. I am in the process of having $10,000 worth of dental implants for teeth lost due to interferon. Would I rather have my teeth than HCV?
HepC treatment is similar to chemotherapy. Chemo patients have even more post Rx problems than we have, but would they rather keep their cancer?
Patients with post Rx problems have my sympathy, but let's keep it in perspective.
Zlikster said
Nov 25, 2013
Hi Alisaf, same here regarding docs and long term damage from HCV...noone knows exactly what are long term damages from hcv infection, except obvious one on the liver (fibrosis>cirrhosis, HCC). One day when i get rid of pesky liver tenant, i will maybe know in my case what was it. I have (what might be from HCV) light pain below right rib, tiredness, eczema, skin pigmentation (since HCV infection like i became alergic to sun?). On neurological base, i really don't know yet.
i am GT3 5 months post tx, relapsed. From peginterferon i am (still) stuck with tinnitus :/ I haven't done RA tests, but i might, since the joints pain is still there (not as strong as it was with Neupogen+Peg shots). Lost some hair, some teeth decay. Nothing that much from my subjective view, except that tinnitus that in my profession is really handicap (depending on severity). From formal explanation on side effects, they said tinnitus is only found in 1% cases, i say it's bollocks! When i see complains on this forum it's prolly round 20% (just people do not report it that much to their docs). Oversaturation with interferons in hope to get rid of virus seems to raise a lot of autoimmune issues.
Hoping for Riba+DAA combo next time, i do not plan to give interferon another chance!
(yeah i do not mind Riba sx at all, better to cry a lot and be out of breath, then damn perm ringing and headache from Peg!)
best
alisaf said
Nov 25, 2013
Hi everyone, I hesitate to say anything because I don't want to discourage anyone. I think my case falls into a smaller percent category I hope. I had hep C genotype 3 for possibly 20-30 yrs before it was found. I was treated successfully with interferon and ribavirin in 2009. Still neg. Yeah! However, the virus damaged my connective tissue even before treatment and now I have vascular, lung and general connective tissue damage that seem to be in a progression of sorts. Of course I'm 60 yo also, but this all started in my early 40s with undiagnosed Hep C. Can anyone relate to this? I find doctors in general are not interested in long term effects of Hep C, although there is a lot on the internet describing this. I have cognitive problems and facial droop left sided weakness and balance is off. The neuro docs tell me they see this type of thing in some people who had Hep C but, oh well, not enough known about it so your on your own. Look man people with Hep C matter, too dagnammit!
Matt Chris said
Nov 25, 2013
Hello Alisaf
Sorry to hear about your ongoing issues. Just wanted a little clarity on your observation.
Are you saying that HepC is responsible your maladies or are you saying the treatment protocol (interferon and Ribavirin) caused more of your issues. Possible its a combination, I feel for you because of the apathy that the Doctors have showed you.
Because this thread is "Post Treatment" we need real world input like yours, it's begs the question about Interferon and its future use in treatment.
In reading this thread and New's and Malcolm's post along with the link that Malcolm provided from (The Hepatitis-C-Trust) I wonder if the effects and after effects will change with shorter treatments (12-weeks) of interferon and Riba?
The bigger decision for a lot of us is, should we avoid Inferferon because of its possible long term side effects and wait another year or treat now with a shorter use of interferon?
Sometimes asking a question works better by asking those that have treated with Interferon what there opinion is. Especially with the window much closer to treat with non-interferon high % cure rates. What do you think Hep-C-Friends.
Matt
-- Edited by Matt Chris on Monday 25th of November 2013 06:42:30 PM
news said
Nov 18, 2013
I started the Incivek triple in November of 2011. The Incivek part lasted exactly twelve weeks, then I did twenty-four more weeks of peginterferon and ribavirin for a total of 36 weeks. That ended late July, 2012. Six months later in January, 2013 they declared I had achieved SVR. I was elated, but felt old, tired, stiff and sore. It is now almost a year and a half since my last peg injection and last week of ribavirin. My muscle strength is still somewhat less than before treatment. I really have to watch my salt intake to manage the swelling in my lower legs and ankles. My hair is nice but not near as thick as it was before. And I will always have some residual anorectal issues from the Incivek. I have learned to live with it.
The good news is I can still ride my bike a long way (did 100 miles in one day early June), hike and canoe, and now we are gearing up for teaching snowboarding to folks with disabilities this winter. I am 60 years old, was 58 when I started treatment. I think we old folks just take more of a beating, and we get well slower. But we get well. At your young age you will be surprised how good you will eventually feel. Give it a year before you get scared. I am sure it will eventually get better. Just grin at the good stuff and try to ignore the bad.
It is real shame you didn't find us until after you completed treatment. I lived here while I was treating, and would have given up on one occasion were it not for the folks on this forum.
Best of luck as you continue to recover. You fought a hard battle, so it is natural to feel beat up.
Alan
Biggyb said
Nov 18, 2013
Eliza wrote:
....this is the most honesty I've had in over a year. Where were you guys when I was on treatment?
Welcome Eliza, this is a great forum. I found it by accident just googling for info and this forum popped up..I finished TX in June and still trying to get back to normal. I do think it takes alot longer for us older folks..Hang in there..
Eliza said
Nov 18, 2013
....this is the most honesty I've had in over a year. Where were you guys when I was on treatment? Oh that's right I had a lobotomy couldn't have found the Hep C forum if I tried.
You're right I have a lot to be grateful for.....sometimes it just gets a little hard to locate the gratefulness.
Up until I joined this forum tonight I thought I was going a wittle bit cwazy.
So thankyou
Eliza said
Nov 18, 2013
Thankyou for making me feel welcome...I read the article you suggested. Seems like not a lot has changed, that's exactly what I'm doing online trying to get answers to questions that I can't get anywhere else. To answer yours and Cinnamons question...I have developed severe osteoporosis, loss of bone density, have constant pain & swelling in my legs, pins & needles & my left leg feels like it weighs 400 lbs, I'm abnormally hungry & crave sweets especially chocolate which is just plain weird because I don't like chocolate never eat it normally and my hearing is totally shot on my left side. But otherwise feeling pretty good. hehe.
I sort of feel like Benjamin Button in reverse.
I've been to 4 GP's since March and I'm astounded at how little they know about Hep C and it's treatment so apparently I'm just supposed to see a psychologist "6 sessions should do it" they say...... how that's going to help with any of the above is totally beyond me.
I started writing a book/journal when I commenced treatment although for the 1st 6 months I only wrote 2 pages because I was a zombie, this picture best describes me post treatment.
I am starting week 13 of post treatment and I can identify completely with what you are experiencing. I have also experienced abandonment by my spouse and have to change my lifestyle and though the future looks bleak I have found that the spirit and mental part is healing but as your self the physical is overwhelming at times. I just keep on putting one foot ahead of the other and try to adjust, like when we were on treatment it was hard to see that we were doing the right thing and killing the virus, I guess I have to accept the physical conditions and try the best that I can. Treatment was long and hard, recovery at least to some put will also be long but without the effects of the virus are chances at a happy life improves
Bill emma and raven
mallani said
Nov 18, 2013
Hi Eliza,
I'm one of the Moderators, from Brisbane, and I've merged your 2 posts. Welcome. Obviously you've achieved SVR and are still having some problems, presumably from the Peginterferon. Sadly, it's not uncommon.
I finished my 48 weeks of triple Rx with Victrelis/Peg/Riba in February, so I am about the same as you. I had a rough time on Rx also, but I'm just about back to preRx normal. By the end of Rx I had profound muscle wasting, and at my age, it's been difficult getting muscle bulk back. I also had quite severe joint pain and stiffness, but this is gradually easing. I was sure I had developed Rheumatoid arthritis but all the tests were negative. What are your main problems? Interferon is well-known for the lasting problems it can leave. If you use the 'Search'button, you will find references to post-Rx problems. Here is one link:
I've come to this forum to look for some answers and hopefully find that I'm not alone.
I finished Hep C combination treatment in March this year so it's been about 8 months. I had a horrid time with side effects whilst on treatment some of which have had a lasting impact on my body & my specialists on 2 occasions considered stopping treatment.
Anyway managed to finish treatment and it was a success. Yay. I was so excited and looked forward to a much brighter future.
I've been told that the Ribovirin & other chemicals leave your body after 6 months....so what I'm asking is what happened, where did I go? Because the person in my body sure isn't me. What happened over that 12 months that changed so much of me? It's like my body has broken down & I feel like I'm 85 years old.
I know that I have so much to be grateful for....but having a hard time seeing it at the moment.
Please I assure you I'm not crazy.....and I have tried talking with my doctors but I don't seem to be getting any where.
Has this happened to anybody else?
Cinnamon Girl said
Nov 18, 2013
Hi Eliza, welcome from me too!
Thanks for introducing yourself, and don`t worry, no-one here would think you were crazy. Unfortunately it`s often the case that our medical teams aren`t very interested in how we progress once tx (treatment) has ended, but as Malcolm said, it`s not that unusual for people to experience lingering side effects or post tx health issues. You obviously had a very rough time while on tx and thank goodness at least you managed to complete it and achieve your SVR. Well done for that, and congrats!
You haven`t mentioned what sort of health problems you are still getting, but for many people it can take a year or even longer to make a complete recovery. I know 8 months seems like a long time especially when you were expecting to feel a lot better by now, but you could still find that your condition improves quite a lot over the next few months or so.
Hi Alisa,
I don't think it's fair to accuse doctors of indifference for the longterm effects of HepC and treatment. They are well aware of them. It's a very complex subject and deserves more research. The long list of possible side effects of HepC and Interferon treatment are well known. There is also a similar long list of the effects of aging. HepC patients are highly attuned to their bodies and are ready to blame the disease and/or interferon for all post Rx woes. Sure, HepC or interferon may play a part, but so what. There's nothing a Hepatologist can do about muscle /joint pains etc. If SVR is obtained, they have done their job, and the patient has been spared a possibly miserable death from liver failure or HCC. I have read most post Rx surveys, and I'm very aware of the negative comments from many patients.
Patients often forget pre-existing problems. They also forget that 60 year olds will have mutiple medical problems compared to 50 year olds. It will be interesting to see how the interferon-free patients fare. I would not be surprised if a good number have the same post Rx problems we have. I am in the process of having $10,000 worth of dental implants for teeth lost due to interferon. Would I rather have my teeth than HCV?
HepC treatment is similar to chemotherapy. Chemo patients have even more post Rx problems than we have, but would they rather keep their cancer?
Patients with post Rx problems have my sympathy, but let's keep it in perspective.
Hi Alisaf, same here regarding docs and long term damage from HCV...noone knows exactly what are long term damages from hcv infection, except obvious one on the liver (fibrosis>cirrhosis, HCC). One day when i get rid of pesky liver tenant, i will maybe know in my case what was it. I have (what might be from HCV) light pain below right rib, tiredness, eczema, skin pigmentation (since HCV infection like i became alergic to sun?). On neurological base, i really don't know yet.
i am GT3 5 months post tx, relapsed. From peginterferon i am (still) stuck with tinnitus :/ I haven't done RA tests, but i might, since the joints pain is still there (not as strong as it was with Neupogen+Peg shots). Lost some hair, some teeth decay. Nothing that much from my subjective view, except that tinnitus that in my profession is really handicap (depending on severity). From formal explanation on side effects, they said tinnitus is only found in 1% cases, i say it's bollocks! When i see complains on this forum it's prolly round 20% (just people do not report it that much to their docs). Oversaturation with interferons in hope to get rid of virus seems to raise a lot of autoimmune issues.
Hoping for Riba+DAA combo next time, i do not plan to give interferon another chance!
(yeah i do not mind Riba sx at all, better to cry a lot and be out of breath, then damn perm ringing and headache from Peg!)
best
Hello Alisaf
Sorry to hear about your ongoing issues. Just wanted a little clarity on your observation.
Are you saying that HepC is responsible your maladies or are you saying the treatment protocol (interferon and Ribavirin) caused more of your issues. Possible its a combination, I feel for you because of the apathy that the Doctors have showed you.
Because this thread is "Post Treatment" we need real world input like yours, it's begs the question about Interferon and its future use in treatment.
In reading this thread and New's and Malcolm's post along with the link that Malcolm provided from (The Hepatitis-C-Trust) I wonder if the effects and after effects will change with shorter treatments (12-weeks) of interferon and Riba?
The bigger decision for a lot of us is, should we avoid Inferferon because of its possible long term side effects and wait another year or treat now with a shorter use of interferon?
Sometimes asking a question works better by asking those that have treated with Interferon what there opinion is. Especially with the window much closer to treat with non-interferon high % cure rates. What do you think Hep-C-Friends.
Matt
-- Edited by Matt Chris on Monday 25th of November 2013 06:42:30 PM
I started the Incivek triple in November of 2011. The Incivek part lasted exactly twelve weeks, then I did twenty-four more weeks of peginterferon and ribavirin for a total of 36 weeks. That ended late July, 2012. Six months later in January, 2013 they declared I had achieved SVR. I was elated, but felt old, tired, stiff and sore. It is now almost a year and a half since my last peg injection and last week of ribavirin. My muscle strength is still somewhat less than before treatment. I really have to watch my salt intake to manage the swelling in my lower legs and ankles. My hair is nice but not near as thick as it was before. And I will always have some residual anorectal issues from the Incivek. I have learned to live with it.
The good news is I can still ride my bike a long way (did 100 miles in one day early June), hike and canoe, and now we are gearing up for teaching snowboarding to folks with disabilities this winter. I am 60 years old, was 58 when I started treatment. I think we old folks just take more of a beating, and we get well slower. But we get well. At your young age you will be surprised how good you will eventually feel. Give it a year before you get scared. I am sure it will eventually get better. Just grin at the good stuff and try to ignore the bad.
It is real shame you didn't find us until after you completed treatment. I lived here while I was treating, and would have given up on one occasion were it not for the folks on this forum.
Best of luck as you continue to recover. You fought a hard battle, so it is natural to feel beat up.
Alan
Welcome Eliza, this is a great forum. I found it by accident just googling for info and this forum popped up..I finished TX in June and still trying to get back to normal. I do think it takes alot longer for us older folks..Hang in there..
....this is the most honesty I've had in over a year. Where were you guys when I was on treatment? Oh that's right I had a lobotomy couldn't have found the Hep C forum if I tried.
You're right I have a lot to be grateful for.....sometimes it just gets a little hard to locate the gratefulness.
Up until I joined this forum tonight I thought I was going a wittle bit cwazy.
So thankyou
Thankyou for making me feel welcome...I read the article you suggested. Seems like not a lot has changed, that's exactly what I'm doing online trying to get answers to questions that I can't get anywhere else. To answer yours and Cinnamons question...I have developed severe osteoporosis, loss of bone density, have constant pain & swelling in my legs, pins & needles & my left leg feels like it weighs 400 lbs, I'm abnormally hungry & crave sweets especially chocolate which is just plain weird because I don't like chocolate never eat it normally and my hearing is totally shot on my left side. But otherwise feeling pretty good. hehe.
I sort of feel like Benjamin Button in reverse.
I've been to 4 GP's since March and I'm astounded at how little they know about Hep C and it's treatment so apparently I'm just supposed to see a psychologist "6 sessions should do it" they say...... how that's going to help with any of the above is totally beyond me.
I started writing a book/journal when I commenced treatment although for the 1st 6 months I only wrote 2 pages because I was a zombie, this picture best describes me post treatment.
I am starting week 13 of post treatment and I can identify completely with what you are experiencing. I have also experienced abandonment by my spouse and have to change my lifestyle and though the future looks bleak I have found that the spirit and mental part is healing but as your self the physical is overwhelming at times. I just keep on putting one foot ahead of the other and try to adjust, like when we were on treatment it was hard to see that we were doing the right thing and killing the virus, I guess I have to accept the physical conditions and try the best that I can. Treatment was long and hard, recovery at least to some put will also be long but without the effects of the virus are chances at a happy life improves
Bill emma and raven
Hi Eliza,
I'm one of the Moderators, from Brisbane, and I've merged your 2 posts. Welcome. Obviously you've achieved SVR and are still having some problems, presumably from the Peginterferon. Sadly, it's not uncommon.
I finished my 48 weeks of triple Rx with Victrelis/Peg/Riba in February, so I am about the same as you. I had a rough time on Rx also, but I'm just about back to preRx normal. By the end of Rx I had profound muscle wasting, and at my age, it's been difficult getting muscle bulk back. I also had quite severe joint pain and stiffness, but this is gradually easing. I was sure I had developed Rheumatoid arthritis but all the tests were negative. What are your main problems? Interferon is well-known for the lasting problems it can leave. If you use the 'Search'button, you will find references to post-Rx problems. Here is one link:
http://www.interferon.ws/Hepatitis-C-Trust-Interferon-Treatment-Survey.html
Good luck and keep us posted. Cheers mate.
Just wanted to say Hi & introduce myself
Hi everyone I'm Eliza & I'm new here.
I've come to this forum to look for some answers and hopefully find that I'm not alone.
I finished Hep C combination treatment in March this year so it's been about 8 months. I had a horrid time with side effects whilst on treatment some of which have had a lasting impact on my body & my specialists on 2 occasions considered stopping treatment.
Anyway managed to finish treatment and it was a success. Yay. I was so excited and looked forward to a much brighter future.
I've been told that the Ribovirin & other chemicals leave your body after 6 months....so what I'm asking is what happened, where did I go? Because the person in my body sure isn't me. What happened over that 12 months that changed so much of me? It's like my body has broken down & I feel like I'm 85 years old.
I know that I have so much to be grateful for....but having a hard time seeing it at the moment.
Please I assure you I'm not crazy.....and I have tried talking with my doctors but I don't seem to be getting any where.
Has this happened to anybody else?
Hi Eliza, welcome from me too!
Thanks for introducing yourself, and don`t worry, no-one here would think you were crazy. Unfortunately it`s often the case that our medical teams aren`t very interested in how we progress once tx (treatment) has ended, but as Malcolm said, it`s not that unusual for people to experience lingering side effects or post tx health issues. You obviously had a very rough time while on tx and thank goodness at least you managed to complete it and achieve your SVR. Well done for that, and congrats!
You haven`t mentioned what sort of health problems you are still getting, but for many people it can take a year or even longer to make a complete recovery. I know 8 months seems like a long time especially when you were expecting to feel a lot better by now, but you could still find that your condition improves quite a lot over the next few months or so.
Wishing you all the best, and good luck!