Hello @bicool and @jenlyn and welcome to Mayo Clinic Connect.
@jenlyn this is the only current discussion on Interferon. If you feel what you are looking for isn't being discussed here, you may consider starting another discussion. Perhaps you even scroll backward to read the previous posts if of interest.
@bicool I am sorry you have been struggling for so many years and am glad you have found a community of others who may be able to provide you support as you have identified with others' descriptions of what they have been going through as well.
What have you shared with your doctor(s) regarding these symptoms and what information/recommendations have you received in return?
oh I wasn't complaining about this message board, my disappointment is with the medical research community at large I guess. I had hoped there was some ongoing research, if nothing else it would give us a sense of validation, and knowing we are not crazy. Sorry if I made it sound like I was criticizing the thread or anyone here, Amanda
Hello, may I ask whom u r talking too? I am 10 yrs post interferon therapy n I have chronic fatigue syndrome, fibromyalgia, CVID n have a permanent port in my chest, 4 sets steel n both shoulders now need surgery...so victims, u betcha we r n this is exactly what this forum is for!!
Just found this...I was treated in 2006 for Hep C at the Miami VA hospital....1st was i interferon/Ribavirin 48 week treatment....3 months later...viral load was high...can’t remember...really high...within a year...new drug, Bocepriver spelling? they did another 48 week treatment ....I was very hesitant...no...no more. I was told my biopsy showed my liver in 3rd stage...it’s a must...the new drug was specific to people who were geno type 4....me!
That was hell....I am now 66...female...do the math...brain fog.
After that treatment they said I was cured....I was thankful it was over and Hep C gone...
It started subtle...I would tell my husband...Don’t feel right....I used to workout ...really active...instead of feeling the burn at the gym...it felt like a flu feeling....
Tired all the time...something was off...I questioned the new drug...boceprever...sorry, I know I’m spelling it wrong.
My husband was diagnosed terminal cancer in 2017...
10 months later he passed...😢 In it all...I was a nightmare...couldn’t handle anything...
I assumed it was all related to his illness ...so sick...his death...and of course it was! It was horrible.
After ...I was a mess...assuming...Who wouldn’t be?
In Jan 2019..my sister came...she said your dying...I lived in bed...couldn’t function...
With her insistence...I ended up at Dr
I live I Fl...I thought people must think I’m a druggie...all wrapped up..cold...always crying..light sensitive...sunglasses...always was thin...but booked anorexic....
Filling new patient was a big deal..
I did put treatments down...
Dr saw me...immediately questioned me about treatments...looking confused almost...They did 2 48 wk treatments basically back to back...
I was apologizing for my appearance..sunglasses..my eyes...wrapped up...
Thought she would assume I did drugs...
Btw..it was an Endocrinologist...always has thyroid issues....told my sister...my levels are off.
The Dr. took me into ultrasound room...I was so happy to lay down,..and it was dark...
She’s talking to young gal ....thyroid is gone or something like that..I thought she was talking about another patient..
No, it was me...
Hard to explain or remember detail...but, was confused.
She was so kind and really pissed that they gave me basically 2 yrs of this poison.
Here I am..May 2021...same Dr. ...can’t get levels right...She gets it...but can’t fix it.
Now, I feel like a recluse...mentally...forget it...I’m like an invalid....and any type of excursion...I’m down for days....
I have 3 beautiful grandchildren....3 sons...their wife’s ...truly blessed...
I cry all the time...I’m missing out n so much..They worry about me...So I become more isolated to protect them.
I can’t ...the normal trying to help...
Eat better..get out more...be more positive....
I’ve tried ...I can’t...I dot want them to worry....
I can’t...I don’t take pain meds like I’ve read on some of your posts....it’s not pain..it’s flu feeling...short of breath...
I found this...searching for treatment of thyroid due to interferon.
So, I hear ya.
It’s a very dark state of mind...I admitted to my Dr...I can’t live like this...she knows well enough now...my personal beliefs....I won’t hurt myself...not to say thoughts haven’t been there.
But, I ask God to take me...I’m done..I’m tired of being so physically and mentally messed up.
I know isolation has made it worse...mentally...but, it so hard...I don’t want my family to worry and it’s hard to fake...
I’m not a pot smoker..but, I will or have if ..like Xmas...at least a temporary mask. Unfortunately, the pot physically makes me more tired after it wears off...and more depressed...
So, very rare...it’s a bandaid.
Ok..I’m done...going to add pic...taken not long before my husband was diagnosed....I think it was Easter 2017...his hospitalization was the following July 2017.
💕🙏💕🙏💕
After four different treatment of interferon and ribavirin ,years later I have brain frog and nerve damage in my feet and headaches all the time ,don't know what do.
After four separate treatments of interferon and ribavirin, years later I have brain frog and nerve damage headaches, and balance problems, what can I do,my doctor doesn't think that interferon and ribavirin has any thing to do with anything.
After four separate treatments of interferon and ribavirin, years later I have brain frog and nerve damage headaches, and balance problems, what can I do,my doctor doesn't think that interferon and ribavirin has any thing to do with anything.
Hi @saddie and welcome to Mayo Clinic Connect. I can't imagine having brain fog and other symptoms for that long and not have a firm diagnosis. You will notice that I moved your post to the discussion you commented on earlier. The best way to connect with other members going through similar experiences is to post where they are.
I'd like to tag @growly, @tpatty5, @ldestella, @denisefinn and @jenlyn, all who have recently commented on their experience.
@saddie have you sought a second opinion or done any research on your symptoms that you could share?
Hi @saddie and welcome to Mayo Clinic Connect. I can't imagine having brain fog and other symptoms for that long and not have a firm diagnosis. You will notice that I moved your post to the discussion you commented on earlier. The best way to connect with other members going through similar experiences is to post where they are.
I'd like to tag @growly, @tpatty5, @ldestella, @denisefinn and @jenlyn, all who have recently commented on their experience.
@saddie have you sought a second opinion or done any research on your symptoms that you could share?
Hello. My husband went through a year of interferon and ribavirin treatment for hep c. This was back in 2005 and he is still having many many health issues following this treatment. Has anyone on this site suffered from severe electrolyte imbalance over the years. My husband has been hospitalized many times over the years with low sodium, magnesium and potassium.
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oh I wasn't complaining about this message board, my disappointment is with the medical research community at large I guess. I had hoped there was some ongoing research, if nothing else it would give us a sense of validation, and knowing we are not crazy. Sorry if I made it sound like I was criticizing the thread or anyone here, Amanda
Does anyone know a number, How many of us are permanently stuck with these side effects. And had our lives destroyed?
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1 Reactionhttps://www.thelancet.com/journals/lanres/article/PIIS2213-2600(20)30511-7/fulltext
They are now doing trails to treat covid with interferon and when people go down hill they’ll say they had long covid.
Is anything being done at the minute about interferon court cases etc.
Hello, may I ask whom u r talking too? I am 10 yrs post interferon therapy n I have chronic fatigue syndrome, fibromyalgia, CVID n have a permanent port in my chest, 4 sets steel n both shoulders now need surgery...so victims, u betcha we r n this is exactly what this forum is for!!
Just found this...I was treated in 2006 for Hep C at the Miami VA hospital....1st was i interferon/Ribavirin 48 week treatment....3 months later...viral load was high...can’t remember...really high...within a year...new drug, Bocepriver spelling? they did another 48 week treatment ....I was very hesitant...no...no more. I was told my biopsy showed my liver in 3rd stage...it’s a must...the new drug was specific to people who were geno type 4....me!
That was hell....I am now 66...female...do the math...brain fog.
After that treatment they said I was cured....I was thankful it was over and Hep C gone...
It started subtle...I would tell my husband...Don’t feel right....I used to workout ...really active...instead of feeling the burn at the gym...it felt like a flu feeling....
Tired all the time...something was off...I questioned the new drug...boceprever...sorry, I know I’m spelling it wrong.
My husband was diagnosed terminal cancer in 2017...
10 months later he passed...😢 In it all...I was a nightmare...couldn’t handle anything...
I assumed it was all related to his illness ...so sick...his death...and of course it was! It was horrible.
After ...I was a mess...assuming...Who wouldn’t be?
In Jan 2019..my sister came...she said your dying...I lived in bed...couldn’t function...
With her insistence...I ended up at Dr
I live I Fl...I thought people must think I’m a druggie...all wrapped up..cold...always crying..light sensitive...sunglasses...always was thin...but booked anorexic....
Filling new patient was a big deal..
I did put treatments down...
Dr saw me...immediately questioned me about treatments...looking confused almost...They did 2 48 wk treatments basically back to back...
I was apologizing for my appearance..sunglasses..my eyes...wrapped up...
Thought she would assume I did drugs...
Btw..it was an Endocrinologist...always has thyroid issues....told my sister...my levels are off.
The Dr. took me into ultrasound room...I was so happy to lay down,..and it was dark...
She’s talking to young gal ....thyroid is gone or something like that..I thought she was talking about another patient..
No, it was me...
Hard to explain or remember detail...but, was confused.
She was so kind and really pissed that they gave me basically 2 yrs of this poison.
Here I am..May 2021...same Dr. ...can’t get levels right...She gets it...but can’t fix it.
Now, I feel like a recluse...mentally...forget it...I’m like an invalid....and any type of excursion...I’m down for days....
I have 3 beautiful grandchildren....3 sons...their wife’s ...truly blessed...
I cry all the time...I’m missing out n so much..They worry about me...So I become more isolated to protect them.
I can’t ...the normal trying to help...
Eat better..get out more...be more positive....
I’ve tried ...I can’t...I dot want them to worry....
I can’t...I don’t take pain meds like I’ve read on some of your posts....it’s not pain..it’s flu feeling...short of breath...
I found this...searching for treatment of thyroid due to interferon.
So, I hear ya.
It’s a very dark state of mind...I admitted to my Dr...I can’t live like this...she knows well enough now...my personal beliefs....I won’t hurt myself...not to say thoughts haven’t been there.
But, I ask God to take me...I’m done..I’m tired of being so physically and mentally messed up.
I know isolation has made it worse...mentally...but, it so hard...I don’t want my family to worry and it’s hard to fake...
I’m not a pot smoker..but, I will or have if ..like Xmas...at least a temporary mask. Unfortunately, the pot physically makes me more tired after it wears off...and more depressed...
So, very rare...it’s a bandaid.
Ok..I’m done...going to add pic...taken not long before my husband was diagnosed....I think it was Easter 2017...his hospitalization was the following July 2017.
💕🙏💕🙏💕
After four different treatment of interferon and ribavirin ,years later I have brain frog and nerve damage in my feet and headaches all the time ,don't know what do.
After four separate treatments of interferon and ribavirin, years later I have brain frog and nerve damage headaches, and balance problems, what can I do,my doctor doesn't think that interferon and ribavirin has any thing to do with anything.
Hi @saddie and welcome to Mayo Clinic Connect. I can't imagine having brain fog and other symptoms for that long and not have a firm diagnosis. You will notice that I moved your post to the discussion you commented on earlier. The best way to connect with other members going through similar experiences is to post where they are.
I'd like to tag @growly, @tpatty5, @ldestella, @denisefinn and @jenlyn, all who have recently commented on their experience.
@saddie have you sought a second opinion or done any research on your symptoms that you could share?
Yes, I'm getting ready to have a Emg and Ncs testing done by my
neurologist, hopefully the can help
Hello. My husband went through a year of interferon and ribavirin treatment for hep c. This was back in 2005 and he is still having many many health issues following this treatment. Has anyone on this site suffered from severe electrolyte imbalance over the years. My husband has been hospitalized many times over the years with low sodium, magnesium and potassium.