Post treatment symptoms

[Andiamo1]

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.

[nygirl7]

I think that alot of us are in the same boat Eric I have thought for quite some time now that I need Adderall - but I sort of thought it was in my imagination.

I'm glad it worked for you - funny how it only works for those who really need it and the others who don't just end up speeding. My son was on it for years and it brought his grades up from Cs to As.  I always thought it was over prescribed and fake but it's not it does work.

[paen53]

Thank you SO much for posting about this subject - I was just about to post on what I labeled as "anxiety issues" post tx that been increasing - even after 1 year post tx. I thought "anxiety" might be misleading though as I don't feel stressed nor anxious as I understand it. More just all over the board in my thought processes. I liken it to a riba rush without the anemia - and actually it feels pretty good during the day, but hell at night. And no increase in BP and thyroid doing OK on Synthroid.....Case in point, yesterday - productive at work but also planned a horseback expedition to Iceland. WTH????

I talked to my Dr. about it and looked at going back on Buspar like I did on tx with Ativan for the rowdier days. Not even touching it.....I'm still all over the board - mind-wise. I will need a follow up, to be sure. Glad to hear that I'm not alone........Pam

[Andiamo1]

You are absolutely correct on the speed thing.  
Adderall is he best test to see if you have ADD.  If you don't, you will feel like you drank 10 cups of coffee.  If you do, you will just feel like you had a good night's sleep and can think clearly.  I felt this way after one pill and for the first time since I treated!

I know I didn't have ADD before I treated with pegylated interferon.  I sure did during and after I treated.

Pam:  hope you feel better soon.

[frijole]

Eric
I didn't know about this effect of interferon. It is interesting.  You are lucky that it was not long-lasting while you were working.  Many would ignore the symptoms but you were smart and sought help.  Thanks for sharing.

frijojle

[DoubleDose]

Wow, I never connected my behavior, and post-tx symptoms to any one particular medical affliction...but after just reading a list of adult ADD symptoms on the web...I would have to say that I currently have just about EVERY one!  Thank you for the insight, and I will follow up on this line of thought immediately.  I never functioned like this before my two tx'es....but now, after reading the web sites for ADD, feel like I could be a "poster child" for the illness.  It really puts all of my odd and debilitating behavioral issues into a 'neat package',.... unfortunately!!!  I am glad I saw your post, since, now there may be some hope for my symptoms.  Here is one of the links to an Adult ADD Symptom Checklist website.  Everyone with post-tx problems should review it!!

http://www.nacronline.com/misc-articles/common-symptoms-of-add-in-adults

Thanks again!!!

DoubleDose

[evangelin]

The brain fog symptom was pretty bad for Joe, even before the 1st two failed TX but it was even worse after that.
The 3rd failed TX was 60+ weeks and he is now brain fog free.  We did two things afterwards and I don't know which one of them lifted the brain fog.  He started HepTech supplements and he started low dose Naltrexone, both immediately after  stopping TX.  I know the supplements cause him to feel much better because they did that even when we were patching together HR's liver lovin list on our own.  The brain fog was more profoundly better after starting the Hep Tech and the LDN, after the last TX.  I know that Hep Tech supplements are good but I can't say with certainty that the LDN is a good idea.  One of the two, must have switched off the brain fog.
Which one did what...I don't know.  He still takes both since it seems the best strategy not to rock the floating boat. His thinking seems as good as new.  He still has cirrhosis and still has some symptoms to deal with, but all are better than they were and he is able to read, study and concentrate well again.
Now myself, on the other hand, could probably benefit from the ADD meds and I don't even have TX to blame.  :>)

[Andiamo1]

Thanks for the link.

[mremeet]

Thanks for the info Andiamo. I've always suffered from some measure of ADD, although it seems to have lessened with age. Interesting to hear about the Adderall, sounds like Ritalin for grownups. I looked it up and apparently it's an amphetamine. Wasn't that one of the original "mothers' little helpers" from the 60's? I'd be worried about getting hooked and also being a potent stimulant, causing or exacerbating high blood pressure.

[willing]

thanks for the helpful update - I'll file that away for my recover/rebuild stage. This confirms my russian-roulette/box-of-chocolates view of ifn. You never know what surprises you take home from the party. Good to know  about specific remedies, where available.

[working dog]

eric....i have to wonder how much age has to do with some of the symptoms we get...i'll be starting tx in a couple weeks ...... kids at school use adderall quite a lot for testing...i'm glad your doing better ....good luck and thanks for the info....billy

[Chrisann144]

hey its been a while since my last post! well my bf is 16 weeks post tx. and is still dealing with the side effects unfortunatly the hep c came back two weeks after he finished tx. he still has no energy brain fog dizzyness just not feeling like he did prior to tx he is very frustrated! he is now saying he doesnt know if he will do tx again! i told him i will support him in whatever decision he makes....it was one of the most difficult things to watch and be totally powerless....any suggestions as what he can do or take to feel better? i know the sides can possibly be permanent! :(

[Andiamo1]

You have a good point.  I assumed it was cumulative IFN, but it could very well be age.  There is no way for me to know.  I don't plan on staying on Adderal for a long time.  After a day on it, most all my symptoms have disappeared  and I feel as I did before I treated.

I am hopeful that I can train my brain to go back to the old way of thinking, but who knows?  I will find out within a month when I stop taking the drug.  There is no taper required, since it is not habit forming.

[Andiamo1]

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.

[R Glass]

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.

[cheesenrice]

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

[cheesenrice]

sorry heres the correct link

http://en.wikipedia.org/wiki/Attention-deficit_hyperactivity_disorder

[Andiamo1]

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.

[cheesenrice]

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

[DoubleDose]

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

[cheesenrice]

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

[willbb]

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

[Andiamo1]

First,  ADD can develop in adults.

The steps in any scientific theory start with anectdotalevidence

[Andiamo1]

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.

[DoubleDose]

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