Aa
HCinINd
after 6 yrs off trmnt still have chronic fatique, headaches and shortness of breath. these symptoms are much better than when on trmnt. have been undtectble since 3rd month of 15 mo trtmnt. (amemia & had to do procrit for 3 mo making trtmnt last for 15). has anyone else experienced this? doctor said it could take up to 2 yrs but been 6yrs. tested evry yr and still undetctable. miserable...wonder why i even did trtmnt sometimes. found out i had virus cuz went to docotr for same symptoms i have now. i am gratful trtmnt was successful, beleive me, but still feel so bad and dctrs dobt listen. thanks for any comments.
I am really glad that someone finally took your problems seriously. Maybe now that they are getting away from interferon someone will finally tell the truth' or even do a study or two as to what can be done to help people.
I think it is awful to continue to tell people that they are not experiencing the sx of interferon. It is really awful when it is done here where people come for comfort, understanding, help.
I think it is awful to continue to tell people that they are not experiencing the sx of interferon. It is really awful when it is done here where people come for comfort, understanding, help.
I'm quite sure they know all of the long term side effects but choose to deny us a diagnosis in the hope that we'll crawl back under our blankets and they can forget about us.I'm sure I would never have got a diagnosis if I wasn't so tenacious!
Very good points.
I liked the one you made one day that if many of these symptoms have been known since the late 90's, documented in the hand out that comes with medication, though not the fact that they can be long term, why haven't they come up with some idea on how to fix it? (Sorry long sentence)
Instead they all deny there are any long term effects.
I don't think the doctors are reporting the long term symptoms to the FDA. Maybe the patients have to do the reporting.
When I treated in a trial, not one of my symptoms were written down, my tx doctor was eventually fired when Roche found out.
While I was on tx my hepatologist tried to tell me hair loss was very rare and none of my symptoms were tx related :)
Everyone, take care, thank you for posting. .
Dee
I liked the one you made one day that if many of these symptoms have been known since the late 90's, documented in the hand out that comes with medication, though not the fact that they can be long term, why haven't they come up with some idea on how to fix it? (Sorry long sentence)
Instead they all deny there are any long term effects.
I don't think the doctors are reporting the long term symptoms to the FDA. Maybe the patients have to do the reporting.
When I treated in a trial, not one of my symptoms were written down, my tx doctor was eventually fired when Roche found out.
While I was on tx my hepatologist tried to tell me hair loss was very rare and none of my symptoms were tx related :)
Everyone, take care, thank you for posting. .
Dee
Sorry, not posting much as pretty ill from tx post 10 years successful, etc.
but totally agree with ya as usual. So many don't report how sick they are, as most patients are sheep! Fact!
... what are the odds that I have PIS and the only other person I know who treated a year after me, she lives half a block from me - my mothers good friend, also suffers from PIS. That must be pretty crazy odds!
If Interferon/Riba is so safe why are the big pharmas running away from that tx? *not saying the other tx are any safer... If you think big pharma isn't scrubbing their data then you have your head in the sand. Even if all the data was accurate the docs/specialist don't have the time or don't really care to read up on it all. They get the info from the drug pushers.
I don't think any big pharma will ever do a study on the long term effects of Interferon/Riba &/or if they did it will never become public! Fact!
it really is just a silly argument anyways. we are sick as all hell for NO reason. best to ya,
frank
but totally agree with ya as usual. So many don't report how sick they are, as most patients are sheep! Fact!
... what are the odds that I have PIS and the only other person I know who treated a year after me, she lives half a block from me - my mothers good friend, also suffers from PIS. That must be pretty crazy odds!
If Interferon/Riba is so safe why are the big pharmas running away from that tx? *not saying the other tx are any safer... If you think big pharma isn't scrubbing their data then you have your head in the sand. Even if all the data was accurate the docs/specialist don't have the time or don't really care to read up on it all. They get the info from the drug pushers.
I don't think any big pharma will ever do a study on the long term effects of Interferon/Riba &/or if they did it will never become public! Fact!
it really is just a silly argument anyways. we are sick as all hell for NO reason. best to ya,
frank
just quoting my consultant but he also spent 5 years telling me that my problems couldn't possibly be treatment related before admitting there were known side effects and I had them!
4 % is not a very large amount. That means that 96% of those treating with interferon don't have lasting debilitating results. So those who have occurred "post interferon syndrome" are really not that common. Thank you for stating this point.
Best to you
Best to you
8 years post (successful)treatment,have been diagnosed with Post interferon Syndrome and Post Viral Fatigue Syndrome-maybe you could ask your Dr about the possibility of having either of these conditions.My consultant said 4% of his patients were left with similar long term side effects mostly fatigue and pain related.Assume you've already had loads of tests to eliminate other issues?
The pattern in post treatment issues I've seen in those who've done interferon therapy is that problems fall into three different categories:
1) Problems triggered by the interferon, such as auto-immune disease
2) Problems caused by carrying the virus for an extended period of time such as those classified as 'metabolic syndrome' (insulin resistance, cholesterol, high BMI, etc.)
3) And things unrelated to the virus or the treatment -- age-related or pre-existing conditions.
These three can all be there in different proportions and they can also overlap. If you are still experiencing problems six years post-tx, it's an excellent idea, as dontworry' points out to be detail oriented in keeping track of your health and don't take simplistic answers or a shrug off from your doctors.
Good Luck.
1) Problems triggered by the interferon, such as auto-immune disease
2) Problems caused by carrying the virus for an extended period of time such as those classified as 'metabolic syndrome' (insulin resistance, cholesterol, high BMI, etc.)
3) And things unrelated to the virus or the treatment -- age-related or pre-existing conditions.
These three can all be there in different proportions and they can also overlap. If you are still experiencing problems six years post-tx, it's an excellent idea, as dontworry' points out to be detail oriented in keeping track of your health and don't take simplistic answers or a shrug off from your doctors.
Good Luck.
Welcome to the forum. Pooh has pointed out you could have a medical issue triggered by your Hepatitis C. You also could just have a medical condition. You stated you went to the doctor before treatment for the symptoms you are having now. Not everything is related to Hepatitis C. You might want to keep a diary of you symptoms. When you feel tired. What you were doing. When you have headaches and shortness of breath. How much water your drinking. What your eating. It's important that you attack this from every angle and show your doctor the patterns of your symptoms. Getting a full physical is very important. Be an advocate for your own health. Buy a blood preasure monitor and keep a record to show your doctor. Show your doctor your actively involved in finding the cause of what doesn't feel right with your body. It's only you who knows how you feel. Show your doctor your keeping records or your health including how much exercise get.
Don't except that your going to have to live this way. Your doctor needs to know your not going to except living your life like this. More so, you have to not except living like this. I know what it's like to have a doctor tell you it's all in your head. I also know what it's like to find out I was right that something was wrong and if my doctor would have taken me serious....we would have found the cause sooner. Don't give up and demand tests and referrals till you get to the answers your looking for.
Best to you
Don't except that your going to have to live this way. Your doctor needs to know your not going to except living your life like this. More so, you have to not except living like this. I know what it's like to have a doctor tell you it's all in your head. I also know what it's like to find out I was right that something was wrong and if my doctor would have taken me serious....we would have found the cause sooner. Don't give up and demand tests and referrals till you get to the answers your looking for.
Best to you
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