Aa
8 yr SVR wondering about long term side effects of others.
I have been having burning, tingling, numb feeling in hands and feet, as well as join pain in hips and ankles. At times the burning is quite intense, it occurs almost all day almost every day. I am currently training for a triathlon, my training hasn't had any impact good or bad on the situation. I am wondering if anyone else has identified these types of symptoms 2 years post tx. I am not talking about symptoms that lag around after tx. those symptoms cleared for me. These symptoms are fairly new, occuring in the last 2 years and getting worse in the past year. I am in the process again of having blood work done, I have been checked for MS, lupus, rheumatoid arth, lyme, all negative last year and again negative just 3 weeks ago. I am now going to be seeing a Neuro. who specializes in peripheral neuropathy, which is what my symptoms are suggesting. Oh and of course I have my yearly Hep C workup which has remained clear. Any body have any input for me or know of any research done on this?
PS yes I have these issues and I had some other side effects which have resolved however, I am happy that the TX I received cleared my Hep C and I would take the TX again even if I knew these side effects would occur.
PS yes I have these issues and I had some other side effects which have resolved however, I am happy that the TX I received cleared my Hep C and I would take the TX again even if I knew these side effects would occur.
The symptoms have been present for quite sometime. They have started to interfere to some degree with my life in the past two years so that would be 6 years after tx. However, I have always experienced the symptoms in a minor degree after tx was completed I will have to speak with my Dr. to see exactly when I started reporting them. I am fairly sure it was one - 2 years post Tx.
These symptoms have been present prior to my training. Part of the reason I am doing this triathlon is to get in the best possible health and see if that in and of itself will reduce my symptoms. Yes I have already laid off training as it is important to do when training to take a week of no training to properly recover, once a month. It made no difference at all, my PN (peripheral neuro.)symptoms don't worsen or lessen and haven't worsened or lessened since the training. Training or not they are there. If anything I am working on being healthier by this endeavor. I ride a bike, and swim as well. The training has had a drastic impact on my depression and tiredness. I don't need medication at all for depression anymore the exercise has really wiped it out. I recommend daily exercise for anyone struggling with Hep C issues even if it means starting with a stroll in the neighborhood. Exercise has been life changing for me.
These symptoms have been present prior to my training. Part of the reason I am doing this triathlon is to get in the best possible health and see if that in and of itself will reduce my symptoms. Yes I have already laid off training as it is important to do when training to take a week of no training to properly recover, once a month. It made no difference at all, my PN (peripheral neuro.)symptoms don't worsen or lessen and haven't worsened or lessened since the training. Training or not they are there. If anything I am working on being healthier by this endeavor. I ride a bike, and swim as well. The training has had a drastic impact on my depression and tiredness. I don't need medication at all for depression anymore the exercise has really wiped it out. I recommend daily exercise for anyone struggling with Hep C issues even if it means starting with a stroll in the neighborhood. Exercise has been life changing for me.
Android,
I hear your concerns. Be sure you get 2nd opinion regarding the biopsy and TX. I was glad I did because as it turned out my tx wasn't going to vary with the results of a biopsy. I would still need TX for 6 months and I would still need the same meds no matter what the biopsy read. I almost had a biopsy I didn't need!!!! Now this was based on my medical situation of course as well as my viral load, my genotype, etc etc. I did research on the best Gastro for Hep C in my area and I was glad I did he saved me from a very unnecessary procedure in my case.
Franke666 I agree no matter what I have to cope with now it is better then the ongoing fatigue and liver complications, and possible liver cancer that may have been most certainly much later on in my future, it was a very real possibility without tx.
I hear your concerns. Be sure you get 2nd opinion regarding the biopsy and TX. I was glad I did because as it turned out my tx wasn't going to vary with the results of a biopsy. I would still need TX for 6 months and I would still need the same meds no matter what the biopsy read. I almost had a biopsy I didn't need!!!! Now this was based on my medical situation of course as well as my viral load, my genotype, etc etc. I did research on the best Gastro for Hep C in my area and I was glad I did he saved me from a very unnecessary procedure in my case.
Franke666 I agree no matter what I have to cope with now it is better then the ongoing fatigue and liver complications, and possible liver cancer that may have been most certainly much later on in my future, it was a very real possibility without tx.
No, you are not a baby! You are smart to be cautious-you wouldn't be normal if you wern't. At least you are not alone. Much good has come from the treatment. I'm just bitter because I was told the side effects would go away. I know the doctors know a small percentage will be crippled for life by the tx. If I would have been told that, I probably would have had the Tx anyway. Ironic. Or moronic. Good luck, and my biopsy was a breeze-yours will be also. Franke666
It would seem that this disease has not gotten the press and attention it requires . It seems that this is a disease still waiting to get exposure and hopefully with that there will be more research . I hope they find answers for you soon. But you are a survivor and it may all turn around for you .
Take care,
Android
Take care,
Android
I agree with Trinity4- do not believe everything you read-but read up on everything you can.
Thank you Android for your kind words. I know more people have far fewer sides than I
and they probably would have died without the treatments. In the end it always comes down to two choices- if all the doctors say you will die without the treatment then you have to make a choice. Most likely the choice to take the treatment will be the right one.
My venue is not to scare anyone but to find those who are suffering as I am and find out if there are studies being done to lessen the sides. If there arent then our voices are not being heard. My physicians know of no study in my area-Houston, Tx., but maybe someone somewhere else knows of a program or study going on somewhere else.franke66
Thank you Android for your kind words. I know more people have far fewer sides than I
and they probably would have died without the treatments. In the end it always comes down to two choices- if all the doctors say you will die without the treatment then you have to make a choice. Most likely the choice to take the treatment will be the right one.
My venue is not to scare anyone but to find those who are suffering as I am and find out if there are studies being done to lessen the sides. If there arent then our voices are not being heard. My physicians know of no study in my area-Houston, Tx., but maybe someone somewhere else knows of a program or study going on somewhere else.franke66
guess I am just freaking this close to biopsy ...I have conducted a survey and yes I am the world's biggest baby ...hahahhaha....
Same reason sx pass for the majority of those who treat. The metabolism and immune system usually brings itself back on line after completing tx, yours did not.
You are an exception, but that's not to say you don't have legitimate grievances.
People react differently short and long term.
Android, don't be alarmed by everything you read.
You are an exception, but that's not to say you don't have legitimate grievances.
People react differently short and long term.
Android, don't be alarmed by everything you read.
I believe the key is asking questions of your doctor about the Tx. Print out some of these stories; o thats the wrong word: TESTIMONIALS! Let him or her look you in the eye and say this is lies! I cannot tell you or anyone not to take the treatment or to take the treatment. I can only tell you what I believe it has done to me. I didn't ask questions. I didn't research until after I began developing weird physical and mental changes like one day I woke up and both elbows had bags of fluid on them. So my PCP says Okay those are Olcranon Bursas and I had them removed. Then I began having one sinus infection after another. Then I felt like I had the flu-forever. My Hepatologist said: "Oh these are side effects but they will pass. Joint pain? Will pass. Depression? Not to worry; will pass. Well they didn't pass. now nearly 4 year later I can't get these doctors to look me in the eye when I ask them why? Why did they not pass? Why!!!??
will probably follow through on Biopsy ..but will really need to hear terrible news to decide to treat
Nearly 4 years ago I began looking into side effects of Interferon when I started getting them. I found a web site that turned out to be a way to sell a concoction. I never tried it and never will. It wasn't the product I was interested in, it was the staggering number of people I found who are going thru what I was and far worse am going thru now. I can't say to someone don't take the treatment-look at what it did to me- because it isn't the same for everyone. Some people get well and lose all the side effects in a matter of days or months. Some die during treatment. Many the Hep C comes roaring back. Who out there has been told your liver is functioning well because of the interferon and we don't know why you now present with all these host of other problems-I want to know! are they related or not? If enough of us can speak together Shering-Plough will listen-please forgive my mis-spelled word(s) and perhaps do a study. Or if they have already done a study , make it transparent! Make it trsnsparent that the good doctors got paid thousands by Shering-P to use the interferon on us knowing it can kill, cripple, and cure. I was told if I didn't take the treatment I had five years or less to live. Last month I lived to see my first grandchild but I was too weak to hold her and I was told I have little time left and they just don't know why!
wow...see it is posts like this that freak me out. I am one week away from a biopsy and even that I am skeptical about. I can easily subscribe to drug conspiracy stories and I no longer drug or smoke or even eat badly. I feel pretty good. Why roll the dice on a pharmaceutical soup that may or may not "cure" me but may or may not wreck me?....
Concerned............ times one million
Concerned............ times one million
I wish you all the luck in the world. I already addressed some of the problems I am having nearly 4 years after treatment. My liver levels are always normal my viral load is 115 and Gastroenterologist said thats fine. However since I began the Tx I have deterioriated to the point of no return. It began slowly. I was an athletic type and even when I was diagnosed with Hep C (i had a blood transfusion in 68 and got a tattoo) I was jogging two and a half miles every morning when I startede Tx now I can barely make it to the bathroom and cannot drive and have a health care assistant and family caring for me daily. None of this runs in my family. I am 60 and feel 100. Not trying to scare anyone. Just think hard before you accept the treatment. If you are feeling well, not drinking, drugging, I know exercise, pure natural foods, juicing, liver cleansing can help,
better than the tx as I have followed cases for nearly 4 years. You don't need that Nat-cell, or milk thistle homeopathic ****. If only I had listened to others instead of my Hepatologist! I am a bitter man because I ask him now what and he says I don't know!
Your liver is fine! So he sends me to a Neurologist, a Psychologist, a Psychiatrist, a surgeon to have olcrannon bursas removed, then my gall bladder, now I'm on heart medication, suffering from joint pain, back, and neck pain-don't want sympathy want to know if there are others so that we can speak in one voice and finally be heard and someone begins a study on Post traumatic Illness caused by Interferon. Thanks Franke66
better than the tx as I have followed cases for nearly 4 years. You don't need that Nat-cell, or milk thistle homeopathic ****. If only I had listened to others instead of my Hepatologist! I am a bitter man because I ask him now what and he says I don't know!
Your liver is fine! So he sends me to a Neurologist, a Psychologist, a Psychiatrist, a surgeon to have olcrannon bursas removed, then my gall bladder, now I'm on heart medication, suffering from joint pain, back, and neck pain-don't want sympathy want to know if there are others so that we can speak in one voice and finally be heard and someone begins a study on Post traumatic Illness caused by Interferon. Thanks Franke66
Lets see now. Was this from treatment? Duh. What are the odds that so many people are developing the same symptoms years down the road. The long term affect from TX is now only coming to light. I only hope that this is not a by product that will continue to get worse as time goes by.
Ron
Ron
I took the Tx almost 4 years ago and am suffering from the side effects ever since including Major Depression, Anxiety and fibromyalgia-none of this runs in my genetic pool. I see a Psychologist twice a month since I began the treatments and he has a PHD. He said Interferon causes neorological damage in a small percentage (but he suspects as time goes by there will be many more) of patients and some never recover; infact he said some deterioriate past the stage I am at now-bed-ridden mostly and unable to do much of anything. He, my psychologist, said the problem is the doctors will not admit it is the interferon because they are afraid of being sued because they well know the dangers of the drug and that they get paid By Shering-Plough a lump some for every patient put on the treatment. In other words we are being used as guinea pigs. Some of us get the real thing; some get a placebo; some get various combinations, strengths! franke66
If you swim in chlorinated water maybe the chlorine is making you sick...i know for a fact its not healthy
it's unclear from your post whether or not your symptoms started two or six years after treatment ended. And while it's possible treatment was at fault, it's also possible that this may be unrelated to treatment given the gap. You mentioned training for a triathlon. If running has been a big of your life, it's possible that many of the symptoms mentioned are running related. have You tried at the least a month away from running to see if things would clear up? even if interferon is culpable, the running maybe making things worse> Swimming on the other hand maybe much kinder to the joints.
I have been dealing with these and similar problems for a few years now, and am getting close to six years SVR. My joints often ache, my neck, shoulders, and hips burn and get numb, as well as arms and now legs and ankles, especially after exercise. When I sit down in the evening to watch TV, my legs feel painful, and often I get a burning throughout the back of my thighs and calves. My thoracic back has recently started really hurting, but with a deep burning that makes it hurt whan I take a deep breath. Its between the ribs. I think my problems are getting worse each year, and I am certain that it was a consequence of the interferon. It sounds like a familiar story on the forum. Not a pleasant situation, and nothing seems to help much.
Doubledose
Doubledose
I have the same type of symptoms. I've been clear 6 years now and about two years ago I started getting what sounds like the same type of peripheral neuropathy. Since it manifested so long after treatment, my neurologist doesn't feel it's interferon related. I've been on an insulin senitizer (Metformin) for a year now, hoping it was all blood sugar / insulin resistance related, but it seems to keep progressing. My neuro says if it gets too painful, I should start taking Lyrica.
I'm sorry I can't help you with information. But I have the same. Exactly like you describe it, only for me it is worst during the night (the burning and tingling, the joint pain is there all the time). For me this started before tx, but post tx it has escalated. During tx it disappeared! I also cleared the virus. I haven't had any explanation from the doctors I've seen. I have gathered from reading on the web that it is peripheral neuropathy, but is there anything to do to get better?
I hope more will come along and perhaps provide useful information. I'd really like some relief too.
I hope more will come along and perhaps provide useful information. I'd really like some relief too.
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