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Having trouble 6 months after finishing treatment
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Having trouble 6 months after finishing treatment

Hi! I finished therapy for hepatitis c, genotype 1a, about 6 months ago.  I was taking peginterferon alfa-2a and ribivarin for 6 months.  I will find out soon if the virus is gone.  My question is about how I should be feeling at this stage.  I have extreme fatigue almost all the time.  My depression is worse than ever even though I take 2 different anti-depressants.  I have pain that makes my quality of life intolerable.  I told my doctor if I had the choice again I would choose not to do the therapy.  My doctor is sympathetic, but doesn't know what is wrong with me.  I have lost all zest for life and have to push myself to do anything.  Will this ever end?  Does anyone have any suggestions?  I can't live like this.  I am only 32 years old.  I welcome any thoughts or suggestions.
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Avatar_m_tn

Hi Stella...sorry to hear about the way you are feeling. Very often it takes a long time to start to feel better from these meds. Six month is a long time ,however it takes sometimes just that long to get one of the meds out of the system.

You mention taking 2 anti -depressants ,,,,are these both from the same doctor.as very often two different types of these meds.can work against each other ,and have adverse affects..

Also has your doctor been checking all your blood labs on a continuous basis .because if certain levels don"t return to normal  this also can make you feel like you are    especially your TSH (thyroid ) marker. If you are hypothyroid there are many symptoms that can be easily helped with meds,

Just some ideas to ask the doc about..and  good luck with your  6 months test..

WILL
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206807_tn?1331939784
I know this is not the answer you want to hear but Recovery is just like tx. Everyone is different.
I would like to tell you everything is going to be back to normal in a few more months, but I can’t. Hopefully things will start improving soon.
6 months is really not that long (even though I know it is to you). It’s been over 3 years for me and like you, my Dr. doesn’t not what to do but treat the symptoms.\
I’m sure they already checked your Thyroid but if not it checked.  
Have you had your Hormones Checked? It is a shot in the dark but who knows? My Testosterone levels where dangerously low (no problem before tx.) It’s worth checking out since both women and men have Pituitary Glands. I’ve been taking bi-weekly shots and it helped quite a bit but I still suffer from other problems.
I would have to log them because they change from day to day. My biggest ones now are Pain, Hard to Concentrate, and no Energy.
It has been a slow, uphill Battle but there is improvement.
PLEASE REMEMBER, just because it has taken some of us this long doesn’t mean it is going to take you this long. If anyone tells you, your going to be fine soon, they’re just telling you what you want to hear. Hopefully you will be, R Glass.
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601210_tn?1302660252
So sorry to hear this. Many of your symptoms sound familar to me.

My son (23) has had lingering side effects, and he is currently taking 2 anti depressants and anxiety & sleep meds also.  Things are definitely worse than before the treatment and things don't seem to be getting much better after either. It's already been 1 1/2 years  since the EOT and we are still waiting for a big improvement. I have not given up on a better recovery, for my son and everyone else.

Our Dr. at 6 month post treatment said well you are cured and basically any problems you think you have are all in your head. He repeated this treatment philosphy before and after, that there aren't any long term side effects.  It seems as though he believes this or doesn't want to admit otherwise to anyone. very sad.

Wishing you a healthy future, sooner rather than later.  Good luck with your viral test.
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1477908_tn?1349571310
I agree with the above posts about the importance of having your thyroid checked, even 6 months post. My thyroid tests didn't show it went hypo until my 6 month post labs and I was then started on a low dose of Synthroid.

Also, follow through with the above info on drug interactions with the two AD's you're taking. It's not uncommon to take two at a time, but if they're not working, dosages may have to be adjusted, or the brands changed. On tx, I went through several before we found one that worked well for me.  

Have you had any PCR's since you finished tx? That long of a wait would have been hard on me, so maybe this could be contributing too, you know, being in limbo.

Hope you find something that helps you feel better soon. Pam
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Avatar_n_tn
I think the comments on this thread point out the very real issue of lingering, and long term side effects after completing tx, that so many on the forum are so quick to either dismiss, or rationalize away.  I really believe that if you looked at 500 post tx'ers, about one year after completing therapy, you would likely find 50% of them or more complaining of the same issues noted by the posters in this thread.  It seems extremely obvious to me that there is an issue with the after effects of interferon in many people, and the symptoms seem pretty similar from one person to another....extreme energy issues, pain syndromes, difficulty thinking and functioning appropriately, sleep and anxiety problems, etc.

  Some doctors (small 'd' in this case) may tell patients that it is all in their heads, but they are plainly and ignorantly WRONG!  This post-tx, post interferon syndrome is becoming pretty common, and is being discussed regularly on HCV boards like this.  My only real issue with all of it is just this:  The tendency of the HCV Medical community to ignore, deny, and to use other means of just plain 'sticking their heads in the sand, in order to avoid really studying this issue.  I cannot believe that supposedly professional, objective, and caring doctors continue to dance around these problems, and try to convince THEMSELVES that it is all either imaginary, or just a very small percentage of post-tx'ers.  We need honesty, and straight forward reasearch on this particular problem...NOW!!!  Let the Pharmaceutical companies stay out of the way on this.  They don't want to know about it anyway!

DoubleDose
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Avatar_f_tn
I would really like to know the proportion of patients who experience permanent side effects after this treatment. I would really like to see the study/extensive survey addressing this. Fear of permanent side effects is what primarily keeping my husband from attempting to treat. He feels great right now, and we have good fulfilling life together. He definitely would not like to end up in the condition described above. The hepatologist, that we consulted in the past, told me that he never heard of permanent side effects after interferon. He said they don't happen. This doesn't make me very comfortable, because I read different things on this forum as well as on the other forums. Obviously, information he has is incomplete.
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Avatar_n_tn
Thank you SO much to everyone who responded to my post!  I was hesitant to participate in anything on-line but it feels really good to know I'm not alone, even if there isn't a perfect solution.  I really appreciate all the ideas and well-wishers.  Thank you!
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206807_tn?1331939784
Even my GP is pizzed off about it. He said, “They do this damage to you with no follow up and dump you back on us to try to figure out how to fix the damage they caused.”
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1477908_tn?1349571310
Precisely!

Even though I was lucky to find a Dr. that was very supportive and knowledgeable DURING tx, I felt kind of dumped afterwards when I started developing issues. I understand that many of the problems were outside their area of expertise, but my PCP was just as clueless. And I found myself questioning everything the PCP recommended and running it through my liver Dr, bouncing back and forth.

This is just my personal opinion, but I think the fibro dx they tend to lump some of us into is a last ditch effort to placate us because the symptoms fit - kind of....And what's scary about that particular dx is that the meds, well, one anyway (Cymbalta) is not liver friendly, especially for those of us with compromised livers. When I ran it past my liver Dr. she said only low dose and LFT's every couple of months. I didn't come this far to start pounding my liver into a pulp again.....

It all reminds me of pre dx times. Some of us found out thru an exam for insurance or donating blood, but many of us sought help for years with unexplained symptoms or mis-diagnosed symptoms -  trying to find someone to believe that what we were experiencing was "real". Deja vu........It seems here, too that we have to be proactive about aftercare and become as knowledgeable about it as we can and often on our own.

Those of us that have been on boards such as this have seen many changes with overall HCV  in the recent past. Maybe this too will change with time and as more and more people begin to be treated. I can only hope......

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Avatar_m_tn
Add me to the list of people who don't feel 100% after 2+ yrs. Nothing serious,  mild fatigue & minor pain. I truly believe this is from the TX drugs.

I'm still glad I treated and was cured. I was feeling ok before I treated and I knew there was a chance of permanent side effects. But decided it was worth the chance. I jumped at the chance to do Telaprevir in a trial.  Better to feel this way then suffer with liver disease if I didn't treat.
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206807_tn?1331939784
I’ll go out on a limb here, these are complications due to “medicinal effects”
Just a couple of days ago a neighbor told me “you aged over night since you did that treatment. You look 10 Years older but I don’t miss that Harley waking me up when you came home.”
I wish I could still wake him up but, when I do feel up to riding, I'm home early and my body wracks of pain. PEOPLE DON"T AGE THIS FAST
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Avatar_m_tn

  Ricky..I didn"t have much residual pain from my short stint at tx. but 4 years on my chpopped rigid tail w/suicide shift aged me bout 20yrs.  :)
Will
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Avatar_m_tn
chopped.....never had a  chpopper   ..what ever that might be
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206807_tn?1331939784
My God, they call it a suicide shift/clutch for a reason. I wouldn't make it around the block before hitting something. I ride a Softail (modified version of The Rigid)
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Avatar_m_tn

  At first it was a little tough to learn..was mostly a show bike ..but road worthy.. built from scratch ..started with a redone 54 pan   ..was a thing of beauty..damn near threw my hip out kickin it.....any way long time ago for me......best I get off this gals thread..she is prolly not to interested in my chopper...sorry stella

later ricky

Will
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96938_tn?1189803458
Although I don't disagree that there may be lingering effects after treatment I also believe that people need to work at recovery, and life, to get every possible improvement.  Whether there are medical follow-ups (like thyroid/RA/hormones/earwigs, whatever) a basic requirement for continued healhy expectations are sound diet, exercise, sleep, purposeful living, and rewarding realationships that provide those purposes.  Have you looked around a WalMart store at any hour of the day?  Do your fellow shopers look like they are in the peak of health?  America is fat and lazy and some blame many things for their sad lot in life that, in many cases, is self-inflicted.

Before people come along and misread this post (eliminating words that I've actually written) I'd like to recaputure some of those words again because of posssible short-term memory issues and/or poor eyesight.  Here they are:  "I don't disagree that there may be lingering effects after treatment"  "some blame " "in many cases".
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601210_tn?1302660252
Hi. I agree that people need to work at their recovery, medical, mental, physical, etc.
But when you have a mental condition and are taking antidepressants, anti-anxiety, pain and sleeping meds I don't think you are necessarily having sound thinking.  That is the reason many are be put on these meds which can be caused by the initial treatment drugs.  None of these drugs were necessary before treatment in our case.

See the following definition : Depression is a common mental disorder that presents with depressed mood, loss of interest or pleasure, feelings of guilt or low self-worth, disturbed sleep or appetite, low energy, and poor concentration. These problems can become chronic or recurrent and lead to substantial impairments in an individual's ability to take care of his or her everyday responsibilities.  Depression is the leading cause of disability.

Add to that weekly counseling and still not being able to pull free of this serious mood disorder that wreak havoc with a person's quality of life.  None of these symptons were present before treatment but lingers over a year later.

It is hard to  work at recovery when there is a very serious impaired thinking going on.  It is something you cannot just "will" away. Depression is not a weakness and no matter how strong you think you are, depression can bring you to your knees and have an impact on every aspect of your life.

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1292648_tn?1303161853
Check your vitamin d level it can couse depretion if low, and take vitamin b12. or bether yet take emergen-c it has all vitamin b 4x a day
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1292648_tn?1303161853
I am on Hepatitis b forum long time, and new here but I know from my expirience When  my vitamin d was low I wos VERY deprest also my thyroid is not funkcioning I am on shyndroid , and vitamins b just help a lot with energy levels, I also have chronic liver desise!
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206807_tn?1331939784
My wife works in the Pharmacy at a Wal-Mart. I hear the stories almost daily. Keep in mind we live in South Louisiana. They all start with, “You won’t believe what a saw today.
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Avatar_n_tn
Am I mistaken, or was this thread edited, censored, etc.  Several posts have been romoved, for no apparent reason.  Very odd.

DoubleDose
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206807_tn?1331939784
Yes, some were removed which confuses the thread because some of the posts appear to be directed to the wrong members.
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232778_tn?1217450711
"Although I don't disagree that there may be lingering effects after treatment I also believe that people need to work at recovery, and life, to get every possible improvement.  ... America is fat and lazy and some blame many things for their sad lot in life that, in many cases, is self-inflicted. "

I agree with this. I am healthier than I was before treatment, but that is because I have decided to watch my diet and exercise. Not doing those 2 is just as likely I think to result in on-going health issues, as the treatment is (or which I have no side effects aside from a little nerve damage in finger tips).
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206807_tn?1331939784
I wish that was the case here. I get plenty of exercise (even though it causes severe pain) and don't eat a lot of junk food. After 3+ Years the Post SX Fairies still have not came.
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190885_tn?1333029491
i think its a good idea to try to cut way down on gluten in our diets for about 6 months...at least 3 months...see if you feel better...sometimes theres something in our diet we just can't tolerate anymore......billy
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Avatar_n_tn
I just think its really as simple as this:  some people experience serious damage from tx, that appears to be permanent, and is not amenable to lifestyle changes or medication...and others don't seem to experience these same after-effects.  There may also be a group somewhere in the middle that has moderate issues that clear up in a few months to a year or so.  The group with the serious medical problems from tx are unique to the treatment process, and need to find a way to address the most damaging issues eventually, through more research and development from the medical establishment.  The group that does not have these severe and lasting after effects, and the group that has not treated yet both are not able to understand the extent and severity of these post tx issues, since they themselves have not experienced them personally.  So, in the end, its tough even having a dialogue with those that are not impacted, because they really have no personal understanding of the problems.

Even if its only 20% or 30% of treaters that end up with long lasting issues, that's still A LOT of people out there, that need better answers, and at least some real, in-depth studies.  Personally I will bet it is a lot more than 20% who are having problems after their therapy has ended.  Maybe we need a site for those who are SVR and have developed serious medical problems after tx...so that their issues can be discussed openly, and their numbers can eventually be established.  If the word got out on a site like this, I guarantee you that in a year or two, you would have a crowded and voceriferous board.  I am just happy that forum members continue to speak out about their own experiences after tx, and are not intimidated by the 'naysayers' into keeping everything to themselves.  Mark my words, just as they have recently acknowledged in Cancer treatment, after many years of avoiding the discussion, HCV treaters will see their therapy with interferon finally discussed honestly in terms of long term potential consequences, and how many patients end up with permanent problems.  Its just a matter of time and ongoing reporting and documentation.

DoubleDose
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Avatar_n_tn
[citations needed]
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Avatar_f_tn
DoubleDose  I agree with you 100%, and to everyone else i'm sorry for your pain but i'm glad ya'll decided to share it on here, because i was beginning to think maybe i was the one that was crazy, i did my treatment for 72 weeks and was told 2 weeks after ending treatment i would be good as new, Depressing to say it's been 2 months and i feel worse have 7 doctors now instead of 2, and then tonight i read some of the comments stating it's been 2 to 3 yrs. not what i was looking to find.
   forgetting all the time, fatigue, joint and muscle pain, red and white blood counts still low, no appite, can't sleep,  but is anyone having problems with itching? i'm still itching like crazy.
ready to have my life back
beachmomma04
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Avatar_n_tn
best thing is to stop all meds that what caused the initial body reactions...its drugged out
mangosteen fruit really gets rid of during and after symptoms and side effects look it up
i am not a fruit n veg or alternate therapy nut.i stumbled on this fruit and it worked big time for interferon and ribavirin
urge everybody to look it up mangosteen
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5275101_tn?1365861027
I feel sorry to have to say this but Interferon has proved to have severe side affects. The only thing that helped me was alternative medicine. It was 4 years with this ladies help before I could eat without severe pain. My brain malfunctions are a real problem, the aching legs everyone mentions are typical of the side effects, Arthritis, paranoia depression etc. I was on the first Interferon before they pegulated it, which I know has even worse side effects due to the time release mechanism, the poisons is in your system much longer. The Hospitals in England won't listen either, they've bought too much of the stuff to stop using it or are paid well for prescribing it. If you have had interferon and anyone suggests trying again with the peg version, tell them no, there is medical proof out there that once you have had interferon, the virus becomes immune to it and therefore taking the same thing in a different way will have no result at all except for poisoning you more. If you keep looking on the internet regarding Interferon and the side effects and cures you will find them. The makers of the drug know only too well about these side effects. If you go on the Lloyd wright website,  http://lloydwright.org/messages/he has the document put forward by the drug company when applying for the licenceto sell, the side effects and stats all on show for them to decide to grant the licence. Check him out he has had hep c and cured himself, his potions are outrageously expensive but he knows loads and the document regarding the drug licence is on there somewhere. So we are stuck with what they have done to us, but there are things we can do to ease our symptoms, keep looking, all the best
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Avatar_m_tn
i have been on this **** for about 20 weeks , i got rid of the virus at 13 or 15 weeks they knocked me down to 3 pills per day with the shot once a week. At about week 15 my blood count went down to about 9 so they put me on procrit thats when i really started to feel like **** and the Dr at the cancer hospital told me procrit has no side affects well thats not what the rest of the people who have taken it have to say. Bottom line you cant believe everything, these people are out to make MONEY thats why they the drug comp. are the best paying stock do you really think they will tell you all the facts not really. You have to listen to your body and make your own calls on your health be smart and dont hang on every word these people say....    
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Avatar_f_tn
The Interferon treatment took my Hep C from a high viral load to -0-.  I could only stand it for about 10 months - that was around 2006.  I kept waiting to get my energy levels back, as well as, mental sharpness.  I found this site as I began to suspect the treatment left me with chronic side effects.  With what I've read - I too am a bit relieved I'm not the only one.

I'm grateful the C is undetectable but I struggle with the same symptoms everyone else is describing here.  Having said that - I would do it again because it worked.  I just would not have an expectation of getting back to my old self.
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