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.
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.
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
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.
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.
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!!
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. :>)
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.
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.
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
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! :(
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.
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........
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
"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 -"
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.
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.
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. :)
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.
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.
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 : /
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
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?
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.
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.
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
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
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