Aa
Quality of life?
I went through Hep C Tx 3 times over a five year period - have been "undetectable for six yrs. It was pure hell and continues to be. Had I known then what I know now I would have opted out. If not for family I would gladly cash in right now. Everything hurts. My guts are a mess, Ulcers IBS acid reflux and severe constiptn. All my joints are bad - osteoarthritis, have had comp. shoulder,, knee surg, back surgeries. It feels like I've been walking on sharp rocks all the time. Any physical exercise causes more pain. Chronic headaches. PTSD and depression are better, completed another in/pt program in Jan at VA Ft Harrison. VA here has no programs for pain mgmt or treatment of chronic pain. They are very hesitant to put a label on anything. I quit all psych and pain meds last fall - to many side effects. I'm in a world of **** and sick of it. Is this as good as it gets? I am definitely NOT having fun anymore. Gabriel
You have sure had a bad time of it.
Can you get another Dr ? not all of this may be from tx?
My son treated three time as well over a two year period. Plus maintenance
Never UND, was on the TP list here for two months than went
to number one in our region. Within the two months, he passed away
from end stage liver disease. He was 26. He went through hell
and never complained. Be glad you're still here to post about it.
I would seek out another Dr.
OH , you my friend are the greatest and wouldn't hurt anyone.
Life's experiences we both know about very well and I know that
is what you ment.
I don't think anyone is pro interferon, but , you're right its all there
is right now , people are now on triple therapy, saving live's but
going through hell to live.
Can you get another Dr ? not all of this may be from tx?
My son treated three time as well over a two year period. Plus maintenance
Never UND, was on the TP list here for two months than went
to number one in our region. Within the two months, he passed away
from end stage liver disease. He was 26. He went through hell
and never complained. Be glad you're still here to post about it.
I would seek out another Dr.
OH , you my friend are the greatest and wouldn't hurt anyone.
Life's experiences we both know about very well and I know that
is what you ment.
I don't think anyone is pro interferon, but , you're right its all there
is right now , people are now on triple therapy, saving live's but
going through hell to live.
I'd like to apologize for my earlier comment to the poster. I wish I'd chosen my words more thoughtfully.
JD:
As the poster's above comment proves, he was mistaken thinking his problems were related to interferon tx. Without knowing someone's history, it's easy to jump to conclusions.
Like most people, my responses are tainted by my life's experience.
When diagnosed with hep C, what I found on the internet about interferon, so scared me, that I delayed treatment. When I finally did tx, my cirrhosis was so advanced that I relapsed and landed up getting a transplant.
This does not make me pro-interferon. However right now it's all we have.
I am very excited and pleased about the interferon free oral tx which looks to be so promising.
JD:
As the poster's above comment proves, he was mistaken thinking his problems were related to interferon tx. Without knowing someone's history, it's easy to jump to conclusions.
Like most people, my responses are tainted by my life's experience.
When diagnosed with hep C, what I found on the internet about interferon, so scared me, that I delayed treatment. When I finally did tx, my cirrhosis was so advanced that I relapsed and landed up getting a transplant.
This does not make me pro-interferon. However right now it's all we have.
I am very excited and pleased about the interferon free oral tx which looks to be so promising.
I have had high calcium levels since the interferon/riboviron Tx - the last year was pegolated - a bit easier to endure. Over six years ago my primary mentioned removing a bad parathyroid gland, but decided to just watch calcium level. Yesterday I researched parathyroidism - the list of symptoms covers about all my issues! Today I'm going to the VA and push my Doc on getting surgery. From what I read there can be relief from a lot of the symptoms almost immediately. I feel hopeful. Not happy about getting cut on again, but if can help I'll do it.
Your words of encouragement are appreciated. I'm a recovering drunk/addict and a Marine - tell me I can't do something! Today, I am hopeful! Thanks, Gabriel
Your words of encouragement are appreciated. I'm a recovering drunk/addict and a Marine - tell me I can't do something! Today, I am hopeful! Thanks, Gabriel
If people aren't free to talk about residual affects of tx, then how can we have a open discussion to talk about what each of us figured out that worked for us. Sweeping under the rug serves no-one, in my opinion.
I know some of what you are going through. I went through treatment in 2007 and it failed and will be starting triple tx soon.
After treatment in 2007 I stopped all meds including cymbalta without my doctors ok (just wanted to be free of all meds) Although I did not have near the problems you have with surgerys, I had constant muscular and joint pain. I also became very depressed, My doctor prescribed methadone (no it is not used exclusivley for treating heroin addiction) The methadone
taking it in small doses maybe 10mg a day or even skipping a couple of days did wonders for pain. The problem is we moved from the florida keys to the orlando area and doctors are afraid to prescribe it as all the pill mills
and doctors giving it out so freely in the past( they call it hillbilly heroin in this area. However I would seek out a good pain management doctor that provides compassionat care. As for the depression I checked myself in to the phsyc in-patient in 2010 as I was thinking about the s word. They found a good antidepressant for me and it works well. The pain comed and goes and have good days and bad and just take advil as it is the point in florida if you go for pain management here they think it is drug seeking behavior. Since you have had so many surgerys and related problems it might be easier for you to find a decent Dr that will treat you . I was prone to depression before treatment and some people have it worse after tx as
you dont come out unscathed after 1 time tx let alone 3 times. Things can get better with proper meds. I look back now and am glad I dont fell like offing myself and take it a day at a time. Good luck ,
John
After treatment in 2007 I stopped all meds including cymbalta without my doctors ok (just wanted to be free of all meds) Although I did not have near the problems you have with surgerys, I had constant muscular and joint pain. I also became very depressed, My doctor prescribed methadone (no it is not used exclusivley for treating heroin addiction) The methadone
taking it in small doses maybe 10mg a day or even skipping a couple of days did wonders for pain. The problem is we moved from the florida keys to the orlando area and doctors are afraid to prescribe it as all the pill mills
and doctors giving it out so freely in the past( they call it hillbilly heroin in this area. However I would seek out a good pain management doctor that provides compassionat care. As for the depression I checked myself in to the phsyc in-patient in 2010 as I was thinking about the s word. They found a good antidepressant for me and it works well. The pain comed and goes and have good days and bad and just take advil as it is the point in florida if you go for pain management here they think it is drug seeking behavior. Since you have had so many surgerys and related problems it might be easier for you to find a decent Dr that will treat you . I was prone to depression before treatment and some people have it worse after tx as
you dont come out unscathed after 1 time tx let alone 3 times. Things can get better with proper meds. I look back now and am glad I dont fell like offing myself and take it a day at a time. Good luck ,
John
it's hard for many of us to hear someone show up here, out of the blue, with nothing but complaints.
This seems unlike your posts and very unsympathetic. This guy never mentioned interferon . To suggest he join another group is nothing more than a GET OUT! if you arent singing the praises of INF!
This seems unlike your posts and very unsympathetic. This guy never mentioned interferon . To suggest he join another group is nothing more than a GET OUT! if you arent singing the praises of INF!
Another sorry that you are suffering. Are you saying that you feel the way you do from treatment alone? Perhaps since you treated 3 times in 5 years has something to do with the way you feel. I wouldn't blame everything on the treatment.
Hope you feel better. Best of luck
Hope you feel better. Best of luck
Mia culpa - It sounds to me like you are a hero already. WTF You have already been through the worst of the worst. A VET, 5 children, 5 grandchildren and all this with Hep and this is just what you have disclosed - not to mention treating 3x in 5 yrs. Holy mackeral. It is hard when a man or woman of iron feels less than.
I asked my daughter when she was a teenager what she thought of the 'S' word (I don't like to say it)? She shocked me with her answer - She thought it was the most selfish thing a person could do. Well, I was glad I didn't let her know I had been ideating. This is tough. Have you tried weed? Pain is a frontier for medicine but there may be studies. My sister had polio as a child and all my grandmother could do was to treat her symtoms of which joint pain was unbearable. She would warm canning wax in water and pour it on the back of her knees and around her ankles which seemed to give temporary comfort. There may be a pain forum with the latest developments - certainly better than my Yayas.
If you can it would be nice to know what treatments you endured and how you believe they contributed. Lord hear me know - if I relapse, I will try again. You won't scare anyone here. I just want to salute you as a fierce fellow warrior!!!!
It does wear one out but time and the desire will restore something even better perhaps. Strike that - even better for sure!!
To Eki1: What you said helped me too. Thumbs up.
I asked my daughter when she was a teenager what she thought of the 'S' word (I don't like to say it)? She shocked me with her answer - She thought it was the most selfish thing a person could do. Well, I was glad I didn't let her know I had been ideating. This is tough. Have you tried weed? Pain is a frontier for medicine but there may be studies. My sister had polio as a child and all my grandmother could do was to treat her symtoms of which joint pain was unbearable. She would warm canning wax in water and pour it on the back of her knees and around her ankles which seemed to give temporary comfort. There may be a pain forum with the latest developments - certainly better than my Yayas.
If you can it would be nice to know what treatments you endured and how you believe they contributed. Lord hear me know - if I relapse, I will try again. You won't scare anyone here. I just want to salute you as a fierce fellow warrior!!!!
It does wear one out but time and the desire will restore something even better perhaps. Strike that - even better for sure!!
To Eki1: What you said helped me too. Thumbs up.
I am really sorry you continue to feel so poorly. It has to be very frustrating.
I have to say I can sympathize with you as I am experiencing less than great quality of life after only one round of triple tx that was unsuccessful. I'm contemplating doing battle again but not with interferon. The fact that you completed three rounds in five years is a testament to your strength and determination.
Sometimes I feel really P.O.'d about everything I have put my mind and body through only to be told I may be suffering from depression?! My headaches, joint and muscle pain with fatigue are constant in spite of vitamins, healthy nutritious food and numerous attempts at exercise.
Tx really affects everyone differently as you well know. I can only say try to take the best out of each day and keep going. The one thing you can count on is that things will change - hopefully for the better!
Sometimes I feel really P.O.'d about everything I have put my mind and body through only to be told I may be suffering from depression?! My headaches, joint and muscle pain with fatigue are constant in spite of vitamins, healthy nutritious food and numerous attempts at exercise.
Tx really affects everyone differently as you well know. I can only say try to take the best out of each day and keep going. The one thing you can count on is that things will change - hopefully for the better!
Wow 3 times in 5 years? Did they just do the same thing over and over and for the same amount of time each? As it had to be just SOC. I would assume you were just always pumping yourself full of these drugs for 5 years..... Treatment has changed a lot as now you would be looking at maybe just 24 weeks total, a huge difference. To bad these PI's wasn't around then.......... Good luck
I am so sorry for what you are experiencing. There will come a time when interferon is a thing of the past and we will hear lots of war stories about it.
I have not treated with interferon, but when my liver became less functional I experienced (and still do somewhat) a lot of pain, joint aches, brain fog, depression, a feeling of hopelessness, extreme fatigue, serious digestive issues, bleeding and muscle cramping. Liver dysfunction at some point becomes extremely painful for most people. I won't talk about interferon on this forum, except to say while it seems to be a savage drug, it has saved lives. In your case, it is about rebuilding your health now. PM me if you are interested and I will talk about some ideas, but the main thing I can tell you is to continue to drink a lot of water, eat only wholesome, low fat food, take some vitamins and go easy on yourself.
You are in my prayers.
I have not treated with interferon, but when my liver became less functional I experienced (and still do somewhat) a lot of pain, joint aches, brain fog, depression, a feeling of hopelessness, extreme fatigue, serious digestive issues, bleeding and muscle cramping. Liver dysfunction at some point becomes extremely painful for most people. I won't talk about interferon on this forum, except to say while it seems to be a savage drug, it has saved lives. In your case, it is about rebuilding your health now. PM me if you are interested and I will talk about some ideas, but the main thing I can tell you is to continue to drink a lot of water, eat only wholesome, low fat food, take some vitamins and go easy on yourself.
You are in my prayers.
I'm so sorry to hear of all your pain and troubles. I do know something of how you feel – I'm currently on my third tx and it better work this time because I've had cirrhosis for 8 years already and I don't know how much longer my liver will be able to compensate. I also live with daily severe pain from a spinal cord injury and from multiple arthralgias. I know the tx might make my joints worse, or they might get better once the virus is eliminated. I'll have to wait and see, but either way sounds preferable to dying of liver failure. If you've known someone who died that way, or even if you just read a lot of the stories on this forum by people who have come too close to that for comfort, you will understand that this is something to be avoided at nearly any cost.
I would like to be able to comfort you and ease your pain and anguish, but of course all I can do is make suggestions. I hope I don't offend you in the process. What I get most of all from your post is how deeply depressed you are. Pain and depression are very intimately linked, with pain able to cause depression, while depression is also able to make pain far more difficult to bear. It is a horrible downward spiral, and I'm afraid you are caught in it right now. You need to find a doctor who can treat your depression and your pain in a comprehensive way. If you can't get that from your local VA doctors then maybe it's time to think outside the box. Is there any way you can get together the cash to go to a good doctor outside the VA? Or how about traveling to another area to take advantage of better VA healthcare? I'm in the SF Bay area and I often meet people who've traveled great distances to take advantage of the VA Hospital in Palo Alto. Maybe this would be an option? You need to find some way to gain a little more sense of control. I really hope you can find your way out of that spiral. Keep me posted.
I would like to be able to comfort you and ease your pain and anguish, but of course all I can do is make suggestions. I hope I don't offend you in the process. What I get most of all from your post is how deeply depressed you are. Pain and depression are very intimately linked, with pain able to cause depression, while depression is also able to make pain far more difficult to bear. It is a horrible downward spiral, and I'm afraid you are caught in it right now. You need to find a doctor who can treat your depression and your pain in a comprehensive way. If you can't get that from your local VA doctors then maybe it's time to think outside the box. Is there any way you can get together the cash to go to a good doctor outside the VA? Or how about traveling to another area to take advantage of better VA healthcare? I'm in the SF Bay area and I often meet people who've traveled great distances to take advantage of the VA Hospital in Palo Alto. Maybe this would be an option? You need to find some way to gain a little more sense of control. I really hope you can find your way out of that spiral. Keep me posted.
Although interferon treatment can cause long term side effects, for most it does not. And it has saved people from dying of cirrhosis.
More people currently die in the US from Hep C than from HIV and it is the number one cause of liver transplants.
As the main focus of this forum is to help those with this virus deal with both it's symptoms and the difficult side effects of treatment, it's hard for many of us to hear someone show up here, out of the blue, with nothing but complaints.
Therefore, I'd like to encourage you to join the following newly formed group:
http://www.medhelp.org/forums/Support-for-alternatives-to-interferon/show/1369
More people currently die in the US from Hep C than from HIV and it is the number one cause of liver transplants.
As the main focus of this forum is to help those with this virus deal with both it's symptoms and the difficult side effects of treatment, it's hard for many of us to hear someone show up here, out of the blue, with nothing but complaints.
Therefore, I'd like to encourage you to join the following newly formed group:
http://www.medhelp.org/forums/Support-for-alternatives-to-interferon/show/1369
So- I'm presuming that you had none of these myriad challenges prior to therapy. I know so many of these symptoms can have ambiguous causes when M.D.'s are doing a differential diagnosis. Do your doctors feel these symptoms have been caused by the HCV therapies which by the way: were? Sorry for your pain.....d
I'm sorry Tundra. I wish I had something inspiring to say, that will remind you of the beauty of your life, but the truth is, I'm sure by age 61 you've heard it all before.
One thing I will say is that it is IMPOSSIBLE to predict the future. Life has ups and downs and we just never know what tomorrow will bring. Tomorrow might bring a cure for your joint pain. It might bring a new baby in your family who you would like to meet. It might bring a device that's so much fun, you just don't want to put it down or stop playing. It might mean your favorite football team wins the superbowl. Or your son just really needs your help.
Today might seem bleak, but tomorrow is a whole new day...an adventure...and we never know what will come with it.
I'm sorry you're in pain today.
One thing I will say is that it is IMPOSSIBLE to predict the future. Life has ups and downs and we just never know what tomorrow will bring. Tomorrow might bring a cure for your joint pain. It might bring a new baby in your family who you would like to meet. It might bring a device that's so much fun, you just don't want to put it down or stop playing. It might mean your favorite football team wins the superbowl. Or your son just really needs your help.
Today might seem bleak, but tomorrow is a whole new day...an adventure...and we never know what will come with it.
I'm sorry you're in pain today.
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