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220090 tn?1379167187

Post treatment symptoms

Each time I took interferon, it left me with Attention Deficit Disorder that was long lasting.  Each treatment seemed to be additive.  After my  last treatment that ended in 2008, I ended up with full blown ADD that made me impulsive and seriously detracted me to the point that I could not read and process anything that was very detailed.  I spent much of my career managing large software projects, so I was very lucky this didn't happen until after I retired.

I finally got so fed up that I went to see a psychopharmacologist.  He prescribed Adderall and it has made a tremendous difference.  My impulsiveness has disappeared and I can concentrate for long periods of time without getting distracted.  I feel as I did before treating and I am even sleeping better and my memory has improved!

I want to share this experience in case anyone else has experienced ADD following treatment with SOC.
36 Responses
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317787 tn?1473358451
I understand exactly what you are talking about, never knowing how you will feel from day to day so that you can't make plans

The doctors all deny that there is a problem  They know, so do the drug companies.  I had a friend who did the tx that you are talking about back in the late 90's. She was treated 3 times with different forms of interferon.  She suffered from neurological problems, her head would twitch when she was lay down to sleep.

She called Schering Plough, of course they denied any problem.

I do think the NADH helped me.  I tried ritalin but it made me too nervous.  I have heard Adderall is not as bad

Take Care
Helpful - 0
317787 tn?1473358451
I don't know if this will help anyone but I wanted to say after I finished treatment I learned about NADH which is supposed to repair RNA DNA, help with the brain. There is a website called nadh which has a wealth of info, yes they sell something but the info is free

I do think it helped me tremendously.  I was so desperate to try to find anything that would help me because I did not feel this way before my first tx.

Thank you all for sharing, it helps so many people
Dee
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747988 tn?1396536878
I totally understand what you are going through.
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Avatar universal
Thank You !  Thank You !   I am taking this info to another Dr. and I will try again to get some Adderall. I stopped trying about 2006 because I really didn't have it in me to just continue. It has been so bad. I can't watch my grandson and I wouldn't even think of taking him in my car with me. I just want some normalcy back in my life. I was always a person to be counted on and now I won't make a commitment because I never know how I will feel or if I will have the energy and mind to focus on making it.  Thank you for the hope your post has just given me.
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Avatar universal
I know for a fact post tx is a nightmare you can not seem to wake up from. You are so right and cheesylogic obviously has not either taken the tx or is just someone with an opinion on everything regardless of knowledge. I am so grateful that I found this conversation regarding Adderall and Hep C today I could just scream. I have been trying to get Adderall for years to help me with my fatigue and brain fog. The doctors I have been to don't give me the one pill I choose but instead give me 5 Rx's all bad for your liver. They tell me I am depressed and give me anti depressants. I tell them I am depressed because I am tired, I am NOT tired because I am depressed. I have also had several Dr's give me Percocet for the pain. They are full of Tylenol very bad for any liver. I stopped going because I felt as though they were trying to kill me. And when I go to the doctor I am lucky if I will even be able to explain myself due to brain fog. This really makes a person think of self medicating, it really does.  
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Avatar universal
I was so glad I came across your post !   I took 'the treatment' in 2000 and it was 3 shots a week and 5 pills a day. Tough, very tough. I felt better for the first couple years after treatment, but the fatigue, brain fog, restless sleep came back. It is worse now than before tx. In fact, it is worse than during tx. I have tried to get Adderall because I was sure it would help. I have had no luck. I do not want to live setting in this chair watching the world go by and not being able to participate in it. That is not living that is just existing. I have had hep C since May 12, 1982 when I received 2 blood transfusions. At this point I do not care if it is not good for my liver I just want to have the capability to play with my grandson and not be to tired to have him spend the night. In fact, I found your post trying to get enough info on the matter to approach my former Dr. and ask him for medication. I do not want to take treatment again. I am 58 Yrs. old I just want to live life while I am alive. Doesn't anyone understand that?
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Avatar universal
It amazes me how many people have severe problems such as add and worry about side effect possibilities many years down the road.... If the add is bothering u so much then what happens " down the road" is no big deal. As a matter of fact you may not make it down the road.  You need to take the meds if they help ....don't listen to someone who tells u that mice had adverse effects years later .... You need help now.....good luck.   Jerry
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Avatar universal
Hello, old friends.  Looking thru old posts, I can't believe I'm coming up on 2 years post tx.  I came back here today to look for feedback on lingering side effects & I found this post.

Hair grew back, weight came back (more than before : (, I sleep well, but my brain is not what it used to be.  It only ocurred to me a couple days ago that this might be lingering from tx.  I had bad brain fog during tx...along with a bunch of other stuff....

I do not have the attention to detail that I had before.  These days, I have trouble staying focused.  I'm dropping the ball, asking stupid questions when the answers are right in front of me...a couple days ago, I didn't even notice an attachment in an email.

My follow up & release is coming up in October.  We will certainly be having the conversation about Adderall...if I can remember to ask  : /
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220090 tn?1379167187
Adderall is prescribed over a wide range. 5 - 60 mg per day.  I took 10mg and had only a slight increase in blood pressure and experienced  only an increase in my ability to concentrate and became noticeably less impulsive.  I guess that is mind altering, but not in the normal sense.

My advice is to see a psychopharmacologist and get a professional opinion.
Helpful - 0
Avatar universal
I am hesitant to try Adderal, but would consider a trial, if my Doc thinks its safe.  I wonder if it creates risk for mild hypertension patients?  I have pretty much gotten off BP meds through exercise and weight loss, but am a little apprehensive of what Adderal might do as far as blood pressure, or anxiety.  Any thoughts or tips?  Thanks for your comments Trish.  I do need to try something at some point.  I have come to a dead end in the last couple of years...all the tests and labs in the world, and still no definitive diagnosis or treatment from any of the specialists I have seen.  They all chalk it up to interferon....but from there forward it seems to be a dead end.  Maybe this avenue will prove beneficial.

DoubleDose
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Avatar universal
DD:  I'm wondering if you're considering trying Adderal, since you're finding a correlation between the symptoms you're experiencing and what Andiamo has described.  I've been watching this thread with interest.  I'm not in a hurry to link what I experience myself with INF - I've always been "scatterbrained", forgetful and found it hard to focus and noticeably moreso since ending treatment.  I'm also not getting any younger!  I'm also not in a hurry to add a drug to my system that's mood and mind-altering if I can deploy alternative strategies, however I can understand why some choose differently as well.  In your case, you've suffered considerably from your various accounts and if Andiamo is finding relief, wondering if perhaps you're considering a trial run for yourself.  Not trying to push you to be a guinea pig...just wondering. :)

Watching this thread with interest.

Trish
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220090 tn?1379167187
I take it you are a person that just likes to debate.  The is great, but probably not the best on this forum.

Surely you must be aware that some drugs to permanent damage.  For instance, interferon can damage our thyroid gland; a person that experiences this side effect will have to take drugs the rest of their life to deal with this side effect.

I admire people that are good debaters, but this is a forum where people are dealing with serious issues and the long lasting side effects of interferon are far more than a semantic discussion about the words we use to describe our ailments.
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Avatar universal
You stated:

  "strange a reasonable logical mind would know side effects start during treatment by definition - they may continue after treatment but they dont just pop up out of nowhere like you suggest -"


My response:

I thought we were discussing what actually HAPPENS to some of us after stopping tx, NOT what your 'logical' mind assumes happens......   The fact is, many people DO experience different and/or more intense symptoms AFTER stopping therapy...possibly due to complex systemic reactions to interferon, and its cessation after long term use.  As MANY doctors have described to me over the past eight or so years, the long term, and permanent effects of interferon are still mostly little-understood, and the ways that our nervous system, immune system, and cellular reactions are altered, sometimes long term, or permanently, are still to be fully understood.  Its not really a drug 'withdrawal' per se, as in 'addictive drugs', but is more an immune system modulator that can, in some or many people, change the ways that their bodies work for a long, long time.  Many of the major teaching hospital are now fully aware that there are potential problems here, in a group of patients.

  Rheumatologists are frequently getting referrals from patients in this group...though they do not seem to have many answers either yet.  But, they ARE aware of the problems.  I really disagree with the way that you, unilaterally, dismiss these real, and documented post-tx issues, as if you were either:   a.  a medical expert or professional in the field, or b. have done studies yourself to back up the 'logic' lurking behind your opinions.  Hey, opinions are fine...just so you don't start thinking they are truth.  

DoubleDose
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220090 tn?1379167187
The steps are: anecdotal evidence, correlation then causation.  There is enough evidence on this forum to establish correlation.

Adderol does not have serious side effects and it worked wonders on me.  I don't see any harm in trying it if your doc agrees and you are miserable with post tx sx.
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220090 tn?1379167187
First,  ADD can develop in adults.

The steps in any scientific theory start with anectdotalevidence
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Avatar universal

Fortunately people today will not do anywhere near the amount of medication you took  and most for much less time.

Coincidence you are having problems with all that medication.?..prolly not .

Hope anecdotally..things improve for you

Will
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Avatar universal
actually anectdotal add presents in childhood - but you can add it to your list for what thats worth

"Funny how a good number of us just 'coincidentally' seem to develop a boatload of nasty problems right after finishing tx." ------------- strange a reasonable logical mind would know side effects start during treatment by definition - they may continue after treatment but they dont just pop up out of nowhere like you suggest - if thats the case i recommend you get back on tx - maybe triple dose
Helpful - 0
Avatar universal
Make sure to add me to the "anecdotal" list on this issue.  Pre-treatment lots of focus and ability to do complex tasks....post-treatment...scattered thinking, restlestness, memory problems, inattention to details, lack of ability to finish tasks without jumping into other things, total lack of focus....and just about all the other symptoms of ADD...or something eerily similar.  Does "aging" cause ADD???  Really???  Not that I have ever read anywhere.  Funny how a good number of us just 'coincidentally' seem to develop a boatload of nasty problems right after finishing tx.  No matter what our age or past medical history.  Now THAT really is a coincidence, isn't it???  Really????  Just call me Anecdotal........

DoubleDose
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Avatar universal
yes i leave it to them too - im not trying to deny your experience - my main concern is for newly diagnosed first time treaters who may be on the fence - best wishes
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220090 tn?1379167187
Who said it was anything but anecdotal?  Before causation there is correlation and there is some evidence of correlation here.

What better place to look for correlation then this forum?  I leave it to the real scientists to prove or disprove causation.
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Avatar universal
sorry heres the correct link

http://en.wikipedia.org/wiki/Attention-deficit_hyperactivity_disorder
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Avatar universal
chalk this up as anecdotal also - wheres the proof of interferon link as causative - there is none

The specific causes of ADHD are not known.[39] There are, however, a number of factors that may contribute to, or exacerbate ADHD. They include genetics, diet and the social and physical environments


http://www.medhelp.org/posts/Hepatitis-C/Post-treatment-symptoms/show/1542774
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206807 tn?1331936184
This is Great News. Congratulations. I am also excited about the Aderall still working. I am going to make an appointment with my Dr. ASAP.
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220090 tn?1379167187
Just a follow up;  my sleep patterns have started to return to my pre treatment norm and I continue to feel better every day.  I would say that aderall relieved most of my post tx sx.
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