Interferon Side Effects/Family Support

[Trying2BSupportive]

I recently began dating a wonderful man, who began treatment for Hep C at about the time we met.  I didn't realize the effects that the medication had on him and our relationship was up and down for awhile.  He has been off the medicine for about 2 months now.  I see changes in him, for the better, but now I notice the forgetfulness and confusion.  He also says strange things at times.  This is all getting better, but he has forgotten some of the things that had happened during the beginning of our relationship.  How long does this last after medication has stopped?  Is it a side effect of Interferon or Ribavirin?  All I knew, until I began looking it up, was that many people have trouble taking it. Is there a support group or can somebody enlighten me about what he is going through?  Thank you.

[NYgirl]

Hi!  I'm not done with treatment yet so I still live in Forgetfulness Land...let me tell you it's a VERY difficult place to be (especially as a working person).

Some of the others will come in and tell you their experience but I just wanted to say - how totally cool that you weren't prejudiced against him and that you saw a great person and went for it. Lots of people look at us all with such a stigma....it's fantastic to see that someone saw the PERSON and not the DISEASE.

He's very lucky to have you.  Hang in there...I'm sure it won't last forever!  :)

[Mister beagle bailey]

This is normal what he is going through and will get better in time.  I'm off the meds 4 weeks now and at times have the same problem.  It takes time for the meds to leave the body and for him to get back to normal.  Don't worry, things are getting better like you said and will continue to.

Beagle :)

[FlGuy]

Remember the movie 'Here Comes Mr. Jordan" ?. It was the original of "Heaven Can Wait".  Towards the end, knowing that he was to finally get the right body, Joe says to Bette something like "some day a guy is going to come along and think he knows you, you'd give him a break wouldn't you".
Having, and getting rid of,  this disease is of no small consequence.  The cure is difficult and certainly has impacts to some cognitive functions, including forgetfullness, tiredness and the ability to concentrate unimpeded. Most people recover fully with few aftershocks.
If he was a good guy before, he will be again.  Give him a break. Besides, it can be fun for you.  You can make up all kinds of stuff, like "remember when you said I was the most beautiful person you ever met".  How could he say anything but "I remember Try, and I meant it then too" .

[cuteus]

I am always saving mementos from places that I have been with my family, just in case my memory fails. During tx or shortly after, I went to 6 flags with my daughters and have only a vague recollection of the day. I sent my youngest to California for a wk last Summer and did not remember it until she gave me details. It seems that we have to focus and concentrate in what we are doing and thinking and we must try to avoid the 'auto' mode of our lives. Things we do absentmindly, like setting keys and glasses down with the idea that we will remember where. It does not seem to work like that on many days. You have to actually look at the keys, for example, at the spot where you are setting them, and concentrate on the action itself, otherwise the 'auto' mode swalllows the memory.

keep showing him pictures and mementos, and the memory should come most of the time. he should improve as time goes by and tx is further away. A good b vitamin supplement might help some.

[Kalio1]

He might not recall every little thing that happened and forget some of the more unpleasant times. It is hard to treat, I mean HARD for many and the days become blurred by the drugs. How sweet you are to go thru this with him. It is nearly impossible to relate to what it is like unless you have done it. People always tell me I "look fine" even though I feel barely living. My recall and cognitive abilities are shot full of holes. I asked my dotor if this will go away and he made reference to what he cals "interferon hangover" and said it could take 6 mos. to a year to have it lift completely.HHe also advised to "work my brain" and do challeging things, crosswords, reading, anything that makes you think hard is good. I thought that was interesting advice. I am stil treating but I do try to do "mind exercises" ow and will continue whe treatment is over, maybe some challeging games would hep ad be fun. Hope it goes away but if not I will just live as an absent minded woman!
He is lucky you had the courage it takes to go thru this with someone, especially in a new relatioship. You hear stories of people cutting and running rather than standing by and being supportive so give yourself credit for having that kind of integrity. He's a lucky guy. Hopefully he will regain his memory and cogitive abilities fully in time.
Did he clear the virus? Is he SVR?

[jmjm530]

Trying2B:... but he has forgotten some of the things that had happened during the beginning of our relationship.
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You mean things like opening doors, sending flowers, x-rated moments...those little promises about the future? Afraid, that's not treatment related side effects, but rather male-related side effects :)
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More seriously, treatment does take a toll on us both physically and mentally. Many of us experience coginitive problems of all sort including memory loss. In fact, some report more cognitive problems post treatment than even during treatment. My doctor calls it "interferon hangover". Hopefully it will pass with time.

All the best.

-- Jim

[Trying2BSupportive]

Thank all of your for your replies.  It has really helped.  And to answer Jim's question, it was remembering things that we did together or an argument we got into.  He began treatment the first month that we met.  At the time, I did not know about his illness because understandably he was reluctant to tell me, but also careful, so I would not get infected.  I saw the changes and also see him returning back to the way he was again.  We almost broke up, but for some reason I hung in there.  I guess I saw the real him, because at the time, I still didn't know about everything.  When I did found out, I will admit, I was upset.  I had a close family member recently pass away, after a liver transplant.  She had had the disease for over 40 years and the treatment did not work because the disease was too advanced. Also, many years ago, when my aunt became sick, they did not know what they do now about Hep C and it was believed to be spread more easily.  I feel bad that I did not understand what my aunt was going through at the time.  She was on the same meds, but the Hep C began attacking the new liver and she couldn't tolerate all the medicines again.  I understand why she couldn't now. She was also 69 and much older than my boyfriend.  I was "angry" at her for not continuing the meds and for dying, but that was selfish of me.  Anyway, I was scared I could have gotten it from my boyfriend, when he finally told me everything.  But, he educated me about it and I went to the doctor with him and realized that we could have a relationship, with precautions.  The virus is undectable at this point in him.  He goes back in 6 months and I hope it is all ok.  I understand a lot now, and thank all of you and wish you the best.

[cynt4136]

iam 41 year old female who is in love witha beautiful man who goes out of his way to help me battle my on demons , i want to comfort him while he is going through tretment with pegasus and others . i need some who could give me some suggestions because when he hurts i hurt       thanks cyndi

[DragonSlayer45]

Good God woman you must be a Saint! This treatment is very difficult for married couples to go through. There have been a few posts about how some marriages just do not survive this ordeal. You are just dating and you decided to just hang in there. You must be a good woman.

I can understand how it would be frustrating for you with him not remembering things. All I can tell you is this tX is very hard on him and no doubt will be hard on you too. If you are still there in the end when he is done, this man better marry you!

[joonbug]

Hi Everyone,
I have been on this treatment for 20 weeks now. Let me tell you it was and still is a rollercoaster ride. What is worse? The physical effects or the mental effects. When i started with the inferon and cogelus pills. It began with extreme flu like symptons, rash from head to toe, my body was on fire and extremely hot to touch according to my partner.
I spoke to my nurse and she said to take tylenol prior to taking the inferon and take benedryl for the rash/ hives. It seemed to work and helped me sleep as well. At one point i was taking 5-6 benadryls and 2000 mg of tylenol to help with the side effects. I had to take tylenol in the morning to get out of bed, when i was able to get out of bed.

I became extremely breathless as i was fairly active, enjoyed exercise, going to the gym, cycling, but had to stop, because i felt faint most of the time.
Just going to work was challenging enough for me.
I also take anxiety medication to help me sleep.

As time progressed i stopped taking the benadryl, and take tylenol only when in extreme pain. I still have many physical pains but have learned to adjust to the pain, unless it becomes really  unbearable.
As a result of this medication i became anemic, so my nurse gave me a booster shot to increase my hemogloblin.

This was within the first three months, the physical effects, i am apparently cleared from the virus.
Around the  4th month , i became very angry, depressed and irratable.
I would start arguements with my partner. I feel terrible, but most times i wouldn't remember what the arguement was about.
The next day was like it never happened, as i didn't remember, the day of, in the moment, or the day after.

I have four weeks left, i am worried that this is the person i have become as a result of this medication, I hope not. If so was it worth it?
My partner / best friend has stuck by me but was very close to leaving me,, because of my irrate, rude, mean, attacting behaviour.
Many times pushing them away, as i felt the urge to be by myself, no self worth, no desire to live life, misery.

I would suggest to be very cautious when using this medication, and use the resourses out there.

Any similar experiences?

[jojojojojojojo]

Hi everyone,

My dad has been diagnosed with Hep C.
He's only 50 and I'm really worried because his friend recently died of Hep C.

Dad's a bit of a rocker by trade and a hippie and i know when he was younger he did his fair bit of drugs so i guess that's how he contracted it.
He's also a bit of a hypocondriact and as a family, my mum, brother and I sometimes don't know when he's really ill and when he's just moaning.

At first he said he wasn't going to do interferon, he tried doing the chinese medicine and started to feel better but his blood test results showed he wasn't improving.

So he's gonna start treatment in December.

Dad's always gone through phases since i can remember. mood swings. when he's jolly he's the best dad in the world, and he's a musician so on stage and around people they all think he's bubbly and wonderfull
but sometimes he'll just spend a week in bed complaining of bad tummy or head or exaustion. He takes sleeping pills and never gets a nights sleep. He does milk it a bit and when he's grumpy he's obnoxious and he and mum argue.
Mum tries to be caring but i think she gives off a vibe of "bring yourself together, do some work and pay some bills".

That's the other thing.
When dad starts this treatment, he's gonna be in bed. he won't be able to gig, or do any transcribing work he normally does, will he? I'm so scared i don't want to see him change, all this stuff about memory loss you guys are saying...

Is there anything that can help the side effects? anything I can do to make it better when he's bed ridden??? anything dad should be eating?

I'm 22 and don't live at home anymore but i'll come back and check up on him.

Basically i guess what i'm trying to get out of this is this -

Does EVERYONE feel like **** when they take these drugs.
How many people ACTUALLY get better from taking them,
During the months your on interferon do you EVER have a good day?
Will Christmas be a nightmare?

Can someone give me some bit of hope because all my dad's been told is how awfull it is. How he's gonna loose his beautiful long blonde hair and how he's barely gonna be able to get out of bed.

Is there any funding my mum can get to pay the bills because dad won't be working? He's never paid national insurance in his life so is avoiding all questions about funding because he's scared he's gonna get stung.

What a frigging mess.

Jo
x

[GSDgirl]

You might want to copy & paste your questions into a new thread.  You will get a lot more replies that way.  Don't have time right now but will be back later.

BTW, it is not always as bad for everyone

Denise