Question.....Post treatment 3 years with some interesting side effects.

[FDB]

Hello Everyone,

Boy, it's been a long long time since I have visited this wonderful site!  And I thank heaven you are still here!!

I have been post treatment for a little over 3 years now and as a genotype 1a I am greatful to say that I am still dragon free. It's been a long strange trip from beginning (diagnosed) to even
now 3 years post. Every step of the way has been an adventure.
I wouldn't say a walk in the park, but definately an adventure.
I am writing this post to try and find out some information from those of you who have are also post treatment.

Understandably after 48 weeks of treatment and throwing multiple pulmonary embolisms 1 week after my last shot, it took some time to get back into life. Especially after experiencing almost every side effect known to man during tx.

So,soon after treatment I began experiencing extreme attention deficit disorder type symptoms and had a very difficult time getting back into my life. I couldn't complete a task to save my life so With the help of a wonderful doctor, I started on Strattera which kicked started my brain into focused thoughts and I've been working with adderall (adderrall) and strattera ever since.

So all has been moving forward in this regard..

But ... 3 months ago I wound up having horrible chills and extreme body aches which brought me to my knees.
I was not sick with anything nor did I have any food poisoning.
So I just thought it was a fluke....

Then again last night the same symptoms woke me up and I've never ver had such a miserable in body experience such as this. It is excrutiating and just comes out of nowhere...
I had horrible chills but no fever. My body was aching to the point where not only could I not get comfortable, but I couldn't stand having anything touch me coz of the pain being so intense.

A couple of months ago my partner spoke to a fellow who was 5 years post treatment and he said he had the same symptoms that I was experiencing that started a couple of years after treatment as well.
His doctor told him it was from the interferon.
No one has given me this sort of information, but I was wondering if there was anyone out there who has experienced any similar experiences.
And if so, what information do you have regarding these symptoms regarding where they come from and what helps to relieve them.

I look forward to hearing your experiences and wish you all the best of health! Have an awesome weekend!

DFB

[bobbyullc]

how do you do?

i do not know if these recent sides are from tx BUT  i have the worst memory problems. i read a page  2 or 3 times to get it? i can not remember things that happened 1 hour ago. i will look into this strattera to see if it helps.
often we blame all the little trouble we have with tx. it may very well be but this is the first i heard of it. i get annoyed when friends say "WELL WE ARE GETTING OLDER"

[BRL]

Congratulations on you becoming SVR. I can only begin to imagine how wonderful that must be.

The best to you now and always..........
Be Well.

[bobbyullc]

SORRY I HIT THE WRONG KEY,


i believe there are long term effects from tx that have not been found yet.
i hope you just have the FLU.  
BOBBY

[willows]

Well, I am post tx four years now, just spent some time with my doc in Seattle.  He is a fine doc at the University of Washington and we talked for a long time about what interferon can leave behind.  It was his opinion that a lot of the symptoms that folks report are NOT from interferon, but from having a virus like Hep C.   For those folks who have been lucky enough to obtain SVR...it was his opinion that their livers might take 5 to six years to heal up and even then, the healing would not be complete, some scars never go away.

But a reaction as severe as yours would scare me silly and I certainly would ask for more comprehensive tests.  I did not clear the virus and have moved from stage 2 to stage three...but have to report that fatigue and a lingering brain fog are my two biggest pains.  Those same issues can be attributed to my old age and my ever blossoming backside.  In the end, it doesn't matter what causes it, I'm fine, waiting for a PI/IFN combo and keeping in touch with the doc.  He says I turned a corner and got old.  I hated him for saying it, but he was right.  So, now, I'm old, I have Hep C and I gotta get my backside slimmed down.

But none of this is even close to what you described.  I do not think what you described in such detail could be left over from IFN, more people would be reporting it and there should be more data out there about it.   Take care and I think I would find a better doctor, I have trouble with doctors who write off symptoms so quickly, but then...when they don't...you may not like the answers.  

[FDB]

Thanks so much for the quick responses!

Yes, it is wonderful to be hep free regardless of the long term effects that the medications might have left.... I would do it over again in a heart beat.

Willow....There have been a large number of people post treatment who talk about residual muscle and joint pain.  This is not new news as we do know that an abundance of interferon causes a constant inflammation which does not always go away.  

I am an occupational therapist and I have come across numerous patients who were on interferon without ribaviron in the 80's who would up with debilitating nerve and muscle pain from the INF.

As far as memory goes, I am turning 50 this year!!!! .... and
I think as our experience tells us in life, we can hopefully determine what is aging memory challenges and what does not feel right.

I knew that my brain was wired in a circle when I stopped treatment.
For instance after doing laundry I couldn't get my clothes back into the drawer!
I'd put them on the bed, then in the drawer, then back on the bed over and over again.  Must have been funny to watch as any pile in the house would make it from one surface to another. Never being put away.

The fuzzyness went away when I started the Strattera...A GODSEND!
I still have to take the meds on a lower dose to maintain but it's better than swimming in a fishbowl.  :)

But these bouts of chills and muscle and joint aches with no cold or flu that lasts for hours.....then just dissappears is weird.
I was hoping to locate more people with similar experiences before I contact my hep doc (which is usually a waste of time anyway).

It's a curious thing especially when so many people wind up with autoimmune challenges during and post treatment.  The long term effects of these drugs are still for the most part unknown, but keeping the questions and communication open as we continue our journeys, will hopefully someday shed some light.

BEST OF HEALTH TO YOU!

DFB

[meki]

Have a question...

Did you think you were ADHD prior to INF?

Cause - I think I was - and I do think that the INF may have jumped it up.

GOD... I'm so sorry - but I have a ton of sides - and I feel like a freaking hypochondriac...

But I am soooo glad there are others who can relate to that.

I'm so embarrassed to go to the doc to report all of the **** going on. I feel like I'm lying. Even though I hardly ever lie. It's weird.

[beamishboy]

i have often thot just that-the interferon aggravates pre-existing issues..sometimes when certain pain paths/patterns repeat often enough we are left with a 'memory' in the nervous system..maybe this can cause flare-ups when interferon activated? just the musings of a trx- addled insomniac..but still grateful for SVR!

[meki]

You know - that kind of makes sense in a logical circuit kind of way.

Like it is already there - DNA programmed, set to go off at a certain time, but INF comes along and jumps the clockwork ahead. Not produced by INF - but aggravated into action.

Hmmm. Interesting. Thanks for that thought process.

[abbas_one]

*** ur doctor and **** those mentaly retad persond who say that your symptom are related to hcv.Be sure it come from brain damage which has induced by peg interferon alpha and riba.interferon can easily damage parts of your brain which are responsible for certain things.interferon can also induce chronic brain toxicity(Brain fog is a synptom of incresed level of free toxic radical in brain that can lead to fatigue and sexual dysfunction).

interferon also will damage hipotalamic reulatory centers in brain

Interferon is a silent killer. NEVER SAY YES TO IT.

[sunspot]

I’ve been ADHD all my life at a low level. I also think the tx might of jump started it a bit higher. Now that I am 18 months post tx, I’m feeling somewhat better the more I move from EOT. My memory and learning ability is not as good as pre-tx but I have been able to deal with it.
Adderall (adderrall) makes me speedy and Strattera raises my BP so they are a no go. My doc is going to try something else on me (I forgot the name of the drug). See what I mean?
I’m sad that abbas’s tx is giving him a tough time now that the HCV is gone but I wish he would not spam this site on a daily basis.

[pigeonca]

Shut up!

There are some people on this forum who are nicer than I am who think you're a sick person seeking advice.  But you do not ask for advice - you merely offer your bogus information to legitimate advice seekers.  Please. go away!  "Dr." Betty Martini and her friends might be able to provide you with the quackery you seek.

[FDB]

Meki..... I was not add or adhd prior to treatment.  I was very focused and very used to accomplishing things.  But looking back, it's easy to say in my earlier years I could have had a bit of an inattentative type of add, but whose to say....I do know that becoming a hamster trapped in a spinning wheel was not present before treatment.   I do  know of many people who said they were add prior to tx which became very amped during and after. As well as people such as myself who didn't show signs of add but became so after tx.

The strattera worked magic intitally but then became too physically uncomfortable to continue. Adderal at low doses has been helpful but after a couple of years I am starting to digress  into the spinning mode again...

I am curious about these chill, tremors and pain that hits quick and lasts for a few hours....You guys bring up an interesting point.......Interferon is present in our body naturally ... and what if we are left with a periodic hyper immune response from our brains response to the hi dose of interferon from treatment....That would make sense....A memory response  or an overeaction  defenses triggered by our nervous system
Hmmmm....

Have a WONDERFUL 4th!!!
FDB

[daisy may]

I have been svr for 5 yrs.I'm greatful but kinda mad that I don't feel better.Still have bouts of fatigue and joint/muscle pain. I live healthy.After I started to feel better from Rebetron I was good for a few months and then the symptoms came back.I'm sorry to hear others are feeling this too but I'm glad it's not in my head.Good luck to all .

[meki]

"  
Meki..... I was not add or adhd prior to treatment.  I was very focused and very used to accomplishing things.  But looking back, it's easy to say in my earlier years I could have had a bit of an inattentative type of add, but whose to say....I do know that becoming a hamster trapped in a spinning wheel was not present before treatment.   I do  know of many people who said they were add prior to tx which became very amped during and after. As well as people such as myself who didn't show signs of add but became so after tx. "


Thank YOU!!

I am having some serious problems with it also. So I'm going to hit our local Mental Health Clinician up. I've been very lucky to stay away from seeing him - but lately things kinda have been piling up at work - and I can't focus to save my life, unless there is something that super interests me or adrenalin is flowing.

Meki

[suzieq2]

As I have posted for the new people trying to make the dicision to treat or not to treat.I cannot stress enough, do not let the the initial fear the Drs. give you. Unless your liver biopsy stage warrants treatment don't do it. I was a #2 and never should have taken these horrible drugs. My experince was it will kill me or cure me.I have the post treament side effects.I thought I was going back to work as office manager at my husbands clinic . He fired me. I lost my brain function. No more multitasking and organizational skills.My speach would be slured for no reason.I will suddenly just go into a stare and it's like he would speak to me and I would snap out of it.After acouple of hours my back,muscle and joint pain is bad, I have to go home and lie down. I will fall asleep intsantly. I am a guilter, I have tried to start a guilt and just trying to get started overwhelms my brain.I am a nonresponder. Off treatment going on two years. I am 53. At age 51 I was fine. It is not old age that has so dramatically changed my life. It was the peg/riba. How can anyone expect to put that extremly harsh drugs into our bodies without permanant damage.It doesn't make sence does it .Please be carefull and think long and hard,educate yourself before you let that fear make you jump right in as I did. I was going to kill this virus.I did everything 100% compliant.Most of us have time.To wait for a drug with better odds.This is a major dicision that effects the rest of your life.They do not know what will happen to us from this drug. 1as&bs our true odds are 15% per one of the best hepatologists in the country.I am so sorry that i did not educate myself, gotten opinions from the best before starting. I would not have treated at the time. and still will not.I try to be healthy and check my blood work every three months and try to deal with what I have been left with.I do not look for anything to change after 2 yrs.I have to take methadone for chonic pain. And I don't like it!!! I have just recently accepted this is my life ater these drugs. It's hard on my family also.My husband is getting a raw deal also.I had a pharmasist tellme to STOP!!! early on. his wife has hcv. Hesays he will never forgive himself for advising her to treat. She stopped after 4 weeks and has remaining sides. for all new people, Please take your time for an educated dicision.

[stacyb321]

Thank you so much for that compelling post.  Im a newbie and struggling with the thought of tx....thanks again.

[RALPH44]

First of all thank you meki  I found it. I found out about a month ago I have hepC but one year ago I had a full physical blood test and everything I was fine started having gallbladder attacks that is how I found out during one of the blood test. Had gallbladder out and liver biopsy only a nickel size bit of dameage and doc thinks I have had it for 33years.

My problem is I have OCD and anxiety attacks dont take anything for it because all the SSRI's side effects were to much. I am hyper sensative to meds. I seem to get most of the side effects. Doc wants me to take pegintron 2b/ rebetol.
What I have read this med. increases the OCD/anxiety (I read it causes anxiety). I still have to work while taking this med. I all ready know I can not  take the SSRI's.
Doc scared me with the damage this med may do to my body.
I feel good. Why do it?

Anyone have any answers.

  

[meki]

*peeking in ---- Hey Ralph - good to see you made it in... LOL*

Ralph --- ok - check this... Before TX I was super hyper sensitive to meds and caffiene.

Now - seem to be doing better - normal..

You've opened up a good question to me.. Since the liver filters things --- when you have HCV is it working properly? And If that is true - then maybe the liver probs caused the probs on meds sensitivity.

Hmmmm... I dunno the answer to that.

I don't know about SSRIs - cause they make me yawn constatntly - but Celexa worked for me at the begining of tx without the yawns... dunno the difference between prozac and celexa - or paxil... but out of the three Celexa was the only one I tolerated without having a constant --- annoying need to yawn... We're talking one every minute 24/7.

I think that I am pro tx --- but with your current problems hmmmm - I would be wary --- and I'd be looking at documenting everything - and staying on top of any sides.

I don't know what genotype you are - or how long your treatment would be for SOC...

But with the conditions you describe - I would certainly ask the doc to stay on top of you - because you think it might be a problem.

KEEP IN MIND --- NOT EVERYONE REACTS THE SAME -- some people have NO side effects.

My belief is KILL THAT VIRUS... Before it kills you.

Before you pass it on.

I dunno - but Ralph it certainly is nice to see you on the boards!

Meki

[RALPH44]

I have geno type 1a I have to take the 48 week treatment I think it is 48 or 42 the long treatment they think I have had it since I was 13 I am now 44 it must have just became active in the last year.

[meki]

Well you're a young pup - how are you doing physically?

How is your VL and are you willing to have more damage to your liver?

I know there are a lot of people on this board who have some issues with things like BiPolar, OCD and other things.

Why don't you Create a post and ask how those people are doing and what special things their docs have asked them to do?

That way you could get some informed ideas going on - to see whether TX (current SOC) is right for you.

It isn't the right thing for everyone - but there might be some good options for you.

Many hugs Ralph. And I'm hoping things go well for you - and you're an early responder if you do start TX.

PS. you're only 4 years older than me. LOL!
Meki