Aa
long term med issues post interferon
Before I was diagnosed with HepC in 2001, I was much healthier than I'am now. I'm always telling my doctors that I never had the weight and the health issues until post interferon...I was recently diagnosed (July 2014) with Hepatic Encephalopathy due to my elevated ammonia levels and evelated AFP...Cirrhosis was suspected. I underwent a complete exam from my neck to my hips including every tests you can imagine, and the results were Moderate Steatosis and Minimal steatohepatitis, surprisingly so. But, on top of that I've also been plagued with Hypoxemia, COPD, Asthma, Diabetic, High Blood Pressure, Hypothyroid, Polycythemia Secondary, Polyneuropathy Diabetes, Polycystic Ovaries, Cervicalgia, Edema, Hyperlipemia, Severe Sleep Apnea- Hep C Remission, Neuropathy pain, Gastritis- Diverticulosis, Irregular Z Line...mind you, some of these have been brought on by smoking 37 years and the weight gain, but my goodness is this normal????????? Has everyone else out there ended up with a laundry list of illnesses?
Hi everyone! I know it is not much comfort to hear but I wanted to say, you are not alone.
There are many many people affected like this from interferon.
Like Frank has said, he has been diagnosed with Post Interferon Syndrome, so have others.
The part that comforts me is that I am not alone, I am not crazy Well I don't think I am LOL
Take care everyone and if you find a magic cure, please come back and share with us.
Dee
There are many many people affected like this from interferon.
Like Frank has said, he has been diagnosed with Post Interferon Syndrome, so have others.
The part that comforts me is that I am not alone, I am not crazy Well I don't think I am LOL
Take care everyone and if you find a magic cure, please come back and share with us.
Dee
Me too....pain etc., but no HepC. Others ask me was the treatment worth it? I try not to answer, I just know that before treatment in 2002, I NEVER took drugs or went to a dr. Now, I go to dr. Every month for meds.....
Thank you for the comment on Hep C...either you have it or not. I guess I'm (scared to say it) cured! 14 years non detectable, I have many side effects, but have learned to manage them to a certain extent .
At least now I know there is a cure and it was worth the hell I went through during treatment:)
Thanks
Ms miss
At least now I know there is a cure and it was worth the hell I went through during treatment:)
Thanks
Ms miss
yes I cut gluten,dairy,meat, 5 years ago and it has helped with some symptoms.
I've always eaten healthily but now have a very small appetite and have to work to keep my weight up.
I've always eaten healthily but now have a very small appetite and have to work to keep my weight up.
I have recently found bupropion (Wellbutrin) to be very helpful in a higher dose than I was taking. Still doesn't get rid of the disturbing "loss of self" completely. Doesn't get rid of all mental symptoms, but it helped me a lot.
I don't know, sometimes it seems like it just keeps getting worse, the auto-immune component of PIS and the ailments associated with that.
Gotta keep away from bread, dairy, factory meats and other inflammatory foods. They make your mental symptoms worse when you have PIS.
I don't know, sometimes it seems like it just keeps getting worse, the auto-immune component of PIS and the ailments associated with that.
Gotta keep away from bread, dairy, factory meats and other inflammatory foods. They make your mental symptoms worse when you have PIS.
You're right, without our strong spouses we'd probably lay around and feel sorry for ourselves. My husband also keeps me going and doesn't really discuss the illnesses,(I think to keep my mind off of it).
Joining this group has also been a blessing, I was very relieved to know there are many others out there going through the same types of symptoms and I'm not alone or crazy. I wish it could be different for all of us, but groups like this are very helpful. Thank you all for taking the time to write your comments.
They are greatly appreciated.
Joining this group has also been a blessing, I was very relieved to know there are many others out there going through the same types of symptoms and I'm not alone or crazy. I wish it could be different for all of us, but groups like this are very helpful. Thank you all for taking the time to write your comments.
They are greatly appreciated.
I was also strong fit and active pre treatment,now I am now a shell,existing rather than living and I am now registered disabled.My husband is my rock-without him I wouldn't get out of bed.However I no longer carry the virus.
I was rarely sick, never went to the doctor, and strong as an ox before undergoing INF/RVN combo therapy.
I've been disabled, impaired, uncomfortable, in pain, itchy, disfigured, ill, medicated, attending daily to health problems, and / or majorly mentally tormented since.
People should be in jail.
I've been disabled, impaired, uncomfortable, in pain, itchy, disfigured, ill, medicated, attending daily to health problems, and / or majorly mentally tormented since.
People should be in jail.
One of the last visits to the Liver Center, about 8 years ago, the nurse said that my body was in chaos. She said that I was correct in that all my blood work was coming back different all the time due to this chaos.
The GP that was treating me way back then understood this well and decided it was rather silly to do bloodwork as it was always coming back either crazy bad or within 3 months crazy good.
When he left the practice I started seeing a very good doctor but it took some time for this younger doc to understand what I was trying to tell him.
Finally when we did a full workup of blood and other stuff my Iron came back nearly 0 (Zero) so I did a course of IV Iron which brought it up to near 26 (I am just reporting the basic numbers) where the min normal should be around 40.
The doc then said I should try some Iron oral. I disagreed saying that usually oral supplements NEVER benefited me but rather made me feel worse off - getting off vitamins/supplements *at one time I was taking a fistful* made me feel amazing... my body just couldn't handle all that junk... and I was eating a very healthy diet.
He felt I should do the Iron oral so I started. Two months into the oral Iron I was feeling very sluggish and asked where he thought my numbers should be. The GP said oral Iron wouldn't do anything for my numbers! I was shocked! I said I wanted to stop them immediately. and the GP agreed. We took my blood to see where my Iron was. Crazy. It was over 100. Now my GP understands that my numbers are in great flux...
So, I guess I am trying to say that take the numbers with a grain of salt. I stay away from most test as much as possible...
Yes, lets stay in touch. frank
The GP that was treating me way back then understood this well and decided it was rather silly to do bloodwork as it was always coming back either crazy bad or within 3 months crazy good.
When he left the practice I started seeing a very good doctor but it took some time for this younger doc to understand what I was trying to tell him.
Finally when we did a full workup of blood and other stuff my Iron came back nearly 0 (Zero) so I did a course of IV Iron which brought it up to near 26 (I am just reporting the basic numbers) where the min normal should be around 40.
The doc then said I should try some Iron oral. I disagreed saying that usually oral supplements NEVER benefited me but rather made me feel worse off - getting off vitamins/supplements *at one time I was taking a fistful* made me feel amazing... my body just couldn't handle all that junk... and I was eating a very healthy diet.
He felt I should do the Iron oral so I started. Two months into the oral Iron I was feeling very sluggish and asked where he thought my numbers should be. The GP said oral Iron wouldn't do anything for my numbers! I was shocked! I said I wanted to stop them immediately. and the GP agreed. We took my blood to see where my Iron was. Crazy. It was over 100. Now my GP understands that my numbers are in great flux...
So, I guess I am trying to say that take the numbers with a grain of salt. I stay away from most test as much as possible...
Yes, lets stay in touch. frank
PS: I posted before I finished my last post.
I said, "If you have not already seen a Rheumatologist, you may want to see one." The reason I say this is because some Rheumatological Autoimmune Diseases cause significant systemic problems. You will want to know if you have an underlying Rheumatological Autoimmune Disorder that is causing systemic manifestations.
I said, "If you have not already seen a Rheumatologist, you may want to see one." The reason I say this is because some Rheumatological Autoimmune Diseases cause significant systemic problems. You will want to know if you have an underlying Rheumatological Autoimmune Disorder that is causing systemic manifestations.
Congratulations on being cured!
Interferon can trigger Autoimmune Disorders. But Hepatitis C can also trigger Autoimmune Disorders.
I have Sjogren's Disease, an Autoimmune Disease, and it was triggered by Hepatitis C, not Interferon. I have had Sjogren's Disease for many years, decades, but I did not treat with Interferon until 2011. So the Sjogren's was triggered by Hep C in my case.
As you can see from the link I provided, Hep C can trigger a number of Autoimmune Diseases.
Most people who develop Autoimmune Diseases have a genetic predisposition to Autoimmune Diseases. Then they are activated by a trigger such as Hepatitis C or other viral infections or Interferon.
It is good that your doctor is testing you for Autoimmune Disorders. Keep in mind that the serum markers for Autoimmune Diseases may or may not be positive, even if you have an Autoimmune Disease. Many people have an Autoimmune Disease but are sero-negative for it. A good Rheumatologist (or other specialist) will knows this and will treat based on symptoms, not just on blood markers.
If you have not already seen a Rheumatologist, you may want to see one.
Best of luck.
Interferon can trigger Autoimmune Disorders. But Hepatitis C can also trigger Autoimmune Disorders.
I have Sjogren's Disease, an Autoimmune Disease, and it was triggered by Hepatitis C, not Interferon. I have had Sjogren's Disease for many years, decades, but I did not treat with Interferon until 2011. So the Sjogren's was triggered by Hep C in my case.
As you can see from the link I provided, Hep C can trigger a number of Autoimmune Diseases.
Most people who develop Autoimmune Diseases have a genetic predisposition to Autoimmune Diseases. Then they are activated by a trigger such as Hepatitis C or other viral infections or Interferon.
It is good that your doctor is testing you for Autoimmune Disorders. Keep in mind that the serum markers for Autoimmune Diseases may or may not be positive, even if you have an Autoimmune Disease. Many people have an Autoimmune Disease but are sero-negative for it. A good Rheumatologist (or other specialist) will knows this and will treat based on symptoms, not just on blood markers.
If you have not already seen a Rheumatologist, you may want to see one.
Best of luck.
I'm also on disability. And yes, life is hell and we have to live each day as it comes. I don't understand we get this scare of liver failure then find out my liver is functioning just fine. Mind you I'm very happy I don't need a transplant, but then why elevated AFP and ammonia levels. They can't seem to explain it...These illnesses are so up and down (I don't like this roller coaster ride), but I'm here and will ride it out as long as it takes to get some concrete answers. I'll keep in touch.
Sorry. I was cured from HepC in 2002 genotype 2b. Treatments lasted 7 months before undetectable. After that my Red Blood, White Blood Cells and Hematocrit levels have been high. Now adding to that Ammonia Levels and Alpha feta protein levels also rising. I went to blood specialist who said we'll just keep an eye on levels, so I'm assuming at this point, the levels are not a big deal. I also recently went to lung doctor who is running autoimmune blood tests. From what I'm reading on the posts, it seems this is mostly related to post interferon treatments.
I am sorry you are having so many health problems. I know that it is very difficult.
You don't say when you treated or if you attained SVR (cure). You mention "Hep C remission" but there is no such thing as remission when it comes to Hep C. You either have Hepatitis C or you do not have it.
If you have still have Hepatitis C, many of the health issues you mention may very well be due to the Hepatitis C. Hepatitis C, in addition to causing liver related health problems such as Hepatic Encephalopathy, also causes many extrahepatic manifestations including, thyroid problems, Type 2 Diabetes, gastric problems, asthma, and many others. People with Hepatitis C suffer death from increased all cause mortality.
http://hcvadvocate.org/hepatitis/factsheets_pdf/Extrahepatic.pdf
As you mention, smoking is most likely contributing to some of your problems, especially the lung and cardiovascular related problems.
I would agree that Interferon can cause residual problems and some of your problems may be due to Interferon.
However, if you still have Hepatitis C, many of these problems may be related to the Hepatitis C infection. If you still have Hepatitis C it would be a good idea to treat the Hepatitis C now. There are new very effective drugs with high cure rates which do not have the severe side effects that Interferon had. Many of these problems may disappear after successful eradication of Hepatitis C.
Best of luck.
You don't say when you treated or if you attained SVR (cure). You mention "Hep C remission" but there is no such thing as remission when it comes to Hep C. You either have Hepatitis C or you do not have it.
If you have still have Hepatitis C, many of the health issues you mention may very well be due to the Hepatitis C. Hepatitis C, in addition to causing liver related health problems such as Hepatic Encephalopathy, also causes many extrahepatic manifestations including, thyroid problems, Type 2 Diabetes, gastric problems, asthma, and many others. People with Hepatitis C suffer death from increased all cause mortality.
http://hcvadvocate.org/hepatitis/factsheets_pdf/Extrahepatic.pdf
As you mention, smoking is most likely contributing to some of your problems, especially the lung and cardiovascular related problems.
I would agree that Interferon can cause residual problems and some of your problems may be due to Interferon.
However, if you still have Hepatitis C, many of these problems may be related to the Hepatitis C infection. If you still have Hepatitis C it would be a good idea to treat the Hepatitis C now. There are new very effective drugs with high cure rates which do not have the severe side effects that Interferon had. Many of these problems may disappear after successful eradication of Hepatitis C.
Best of luck.
Yes.
I treated, became undetectable & 100% disabled! When my case was heard by the Judge my files had to be brought in on a wheeled cart!!! The medical records were so huge they could not be humanly carried they weighed so much!
So, yes, I continue to have multiple health issues after being undetectable 10+ years after treating. Life is hell but I try to be positive.
Best of luck to you
I treated, became undetectable & 100% disabled! When my case was heard by the Judge my files had to be brought in on a wheeled cart!!! The medical records were so huge they could not be humanly carried they weighed so much!
So, yes, I continue to have multiple health issues after being undetectable 10+ years after treating. Life is hell but I try to be positive.
Best of luck to you
Have an Answer?
You are reading content posted in the Hepatitis C: Post Treatment Issues Community
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
