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Avatar universal

What are long term lasting side effects of treatment?

I cleared the virus after two full years of interferon/ribo, six years ago...
I have been experiencing anxiety attacts and possibly cognitive disorders...Can anyone refer me to a website with info?
                    Thanks, POZ
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Avatar universal
hello, my name is carlajean and I have been post treatment 6 mos. now and have terrible side affect's ,and or withdrawal symptom's, I feel crazy@ time's and my body pain is terrible and depression worse even on med's I take elavial and adderral and valium have had yelling out burt's and angry to say the least, lasting affect's are real and I was told nothing about how I would feel after treatment by anyone I had to find out by myself,i am also tired and panic attack's insommia,pain in back feet,hip's and leg's ,gastro problem's in the bowel department I feel hot and cold and still have fever's @ nite can anyone relate? when does it stop ?
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Avatar universal
I am 9 yrs post therapy and feel horrible!  Still getting diagnosed. All over joint paint, extreme fatigue, might be Polymyalgic rheumatica... Never felt like the same old me after treatment, but at least the virus cleared.
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317787 tn?1473358451
Hi, welcome, this is an old post.  If you go to the top of the page and click on "post question" I am sure you will receive some answers
Good luck
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Avatar universal
It's June 2013. Is anyone post treatment for 10 years? My husband is. He lives in agony and is being diagnosed with more serious problems frequently. The doctors have put him on antidepressants, acupuncture, physical therapy, etc. They are not helping his quality of life. They are not interested in learning the side effects of combo therapy. Anyone have any ideas ?
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Avatar universal
dc6
ok thanks
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1815939 tn?1377991799
Hello and welcome to the forum.

You are posting in an old thread and many may not read it. You will receive more responses if you start a new thread. Go towards the top to the orange bar "Post a Question and click on it and write your post.

You could copy and paste this post but please also include which drugs you will be taking (Victrellis or Incivek) so people know what you are taking.

I will respond more after you let us know which drugs you will be on.

Congratulations on starting treatment.

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Avatar universal
dc6
hi, im about to start the new trmnt i am geno type 1, and scared out of my mind !!!!  im scared because i tried the old treatment 1 1/2 yrs ago and i had debilitating side effects had to leave my job for months during the trmnt.  well thank god my boss is very understanding they are giving me 6mths off !! to start this trmnt nxt week ! will be 3diff drugs ill be on (new trmnt) im scared of the side effects and the long term effects !! im 51yrs old and already am getting deppressed just the thought of doing this harsh trmnt and memories of the last time i tried !! only stayed on the trmnt for 3mths and my viral count did go down very low to this day and my dr is suggesting that i do the new trmnt good candidate to be svr a! any suggestions on what i can take or do for the side effects during trmnt !! i was very very fatigue/headaches/depression/dry dry skin/rash/what can i take >? pls help im getting way too scared.  
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1965096 tn?1325528161
Right On!!! I just finished tx 3 weeks ago w/ the "new" drug. (6mos. tx time), and I'm still very tired, my hair is till thinning, skin still dry and itchy, and my brain has a "fog" so bad that I can't even remember where I'm at or what I'm doing for about a third of the time. I used to be bubbly, and FULL of energy, and friends would call me to ask about something that happened 20yrs. ago because my memory used to be awesome!!!! Now I can't remember where I'm going when I'm driving down the road.... I would do tx again, but I really hope the after effects go away soon!
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Avatar universal
You might want to get your "facts" straight when you quote someone, I didn't say this:

"The combo tx has been around about 9 yrs, he has treated I think he said 600 patients on this medication and all his patients have recovered post tx in either 2 or 4 weeks - no long term sides."


So you go ahead and "pick it apart" but HepCinsd said it, not I.


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Avatar universal
Having completed 13 of 24 weeks as a type 3a I started reading views on long term sides from tx. I felt as I was UND at 4 and now 12 weeks I would quit tx because my chance of SVR would've been greater than 80% if I stayed the 24 weeks. But I may already have reached SVR. So I addressed the sides with my Doctor last Thursday and this is what the "expert" has to say:
"The combo tx has been around about 9 yrs, he has treated I think he said 600 patients on this medication and all his patients have recovered post tx in either 2 or 4 weeks - no long term sides. Additionally we discussed 9 yrs in not sufficient history to conclude really long term results. Basically he said there is NO information out there proving long term sides from tx". Now this doesn't mean there isn't. Again, we have to make our own choices based on our unique situation and accurate information.
He mentioned if I stayed the 11 more weeks my probability of SVR would rise to 90% given my health and other variables, and if I quit and maybe relapsed I would feel bad about the 11 weeks already invested. He basically helped convince me to stay the course. Now, VX950 is 3 to 4 years away and we DO NOT know it's sides or success rate. Also he said it was not a stand alone drug, implying maybe you would take it along with the Ribavirin and Interferon. He is a hepatologist and I believe this is all he does.
The side that is bothering me the most now is the Riba Rash started at week 10, & it seems worse than any other side I have had on this tx. The Dr gave me an antihistamine Atarac it's ok, helps me sleep.
Hope this helps others as the forum was great for me starting treatment.
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Avatar universal
"The combo tx has been around about 9 yrs, he has treated I think he said 600 patients on this medication and all his patients have recovered post tx in either 2 or 4 weeks - no long term sides."

I am sorry but this is just another doctor who is full of ****.  I don't think you will find even a handful of people who did this tx that "recovered" in 2 or 4 weeks - even those who have no long term sides!  This is exactly the misinformation that I have been posting about.  It is such a disservice to people who are in the decision-making process about tx.  It makes me crazy mad.  Even though I wasn't informed about long term sides, at least my doctors let me know it would take "time" after treatment for me to "recover."  How many people do you know who did chemo that recovered in 2-4 weeks?!  Interferon is a chemo drug!

-cbee
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Avatar universal
This is part of the reason I have a hard time deciding if I should quit having already cleared. It does seem hard to believe patients are okay 2-4 weeks post tx, keep in mind strong healthy patients prior to tx. My problem is studies show SVR percent higher for 24 weeks vs 16 weeks (type 3a) of tx but as I may have already achieved SVR do I put more poison or lessen the percentage of SVR. It is really, really a tough call to make. Obviously it is not a no brainer.
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107513 tn?1232286464
Yeah, I just had to chime in here....Your Dr is full of sh@T!!! Healthy patient? Well, one would think if that his theory was true, a young healthy man such as myself would bounce back in two weeks post tx..
Truth, I felt better the first week post..Second week, started getting some energy back, but then I got hit hard with all sorts of sides for like the next two or 3 weeks. The body goes through a sort of detox, or withdrawal just a drug addict, and the first couple weeks post treatment can be as bad, or worse for some..
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Avatar universal
Hi, I am 3a too. I am so glad you spoke to your doctor, be careful not to base health decisions on things you read on the internet. My doctor said the same thing as you and has treated twice as many hep c patients and his numbers are similar.
He did say some can take 6 months to fully feel rid of the drugs, but that was "a rarity" to use his word.
Keep in mind the numbers and statistics from your DOCTOR are based on facts and not on random opinions/experiences of others on the internet. It reminds me of children's argument when they want to do something and tell their parents "everybody is doing it!" as their defense. Sure, the people your kid knows might be doing it but that certainly isn't "everybody" but in his reality, it is. The same goes for this subject. If you hang around with  people who are all going thru problems it can appear "everybody" is going thru it. I consulted with not just my doc but another gastro AND another Heptologist and when I mentioned "long term side effects" to one of them his response was " Did you read that on the internet?" He cautioned me to not take what I read on the net and let it influence my health decisions.
You are smart to listen to your doc.
I hope you hang in there and the tx is successful, you are more than half way there!
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Avatar universal
I'd just like to piggyback a little on Revenier's thoughts. This is not a pro-treatment or anti-treatment issue. Rev says he's as pro-treatment as they come. I'm also pro-treatment as I did treat myself -- but somewhere to the left of Rev. But again that's not the point here.

Two people with the exact same stats can read the same post treatment experiences and come to different conclusion about whether they will treat or not. The important thing is that the information be put out there so the eventual decision -- whether it be to treat or not -- is based on all available information.

Some say this is fear mongering -- well, as someone who has competed in some extreme sports, I've learned that fear can be a healthy thing. It is ALWAYS in your interest (and sometimes your life depends on it ) to have a realistic fear of your adversary before making any type of decision -- be it riding a monster wave or treating an illness. And make no mistake, there are two adversaries here. One is the virus and the other is combo treatment.

-- Jim
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107513 tn?1232286464
Just about the best statement yet!!!!

Jim states: <strong>Two people with the exact same stats can read the same post treatment experiences and come to different conclusion about whether they will treat or not. The important thing is that the information be put out there so the eventual decision -- whether it be to treat or not -- is based on all available information.</strong>

Damn right!!!! And not based off of what Kalio's Dr approves, or if Kalio agrees or not.. Really, it's not a popularity contest, but a personal decision based on all aspects and options presented.. It amazes me how the person accusing others of fearmongering, is actually the person instilling the most fear? Telling people what to do and how to do it, and when to treat, and when not to treat, now thats scarey!!! To tell people that supplements and alternative options do nothing, and to instill the fear that they are pressumably harming themselves by following others advice if it does not come from their Dr, or I guess Kalio's, Now that is scarey!!! Most Dr's are there to make a living, not to cure.. They are there to <strong>treat</strong>, not to heal!! Most have only had a 30 minute powerpoint presentation on the treatment protocols for HCV, or read the projects in knowledge PDF, just as most of us have.. Hell, most of us have more related trials and studies on HCV saved on our harddrives than most of our Dr's combined..
Information members give here is not just "ancedotal", not just opinions so to speak.........But REAL life first hand experience. If a study or paper is archived for reference on "long term sx's from interferon", who do you think they will poll? Who do you think they will come to for the material? Do you think it will be a round table of Dr's, or a survey from patients such as the members above who have experienced them?  

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Avatar universal
Just for the record, you are not in a positio to say "what I know"

Doctors "facts" and opinions carry more weight with me. They have a medical school degree and a heck of a lot of clinical experience to back up their opinions. Educated opinions trump the opinion of others when I am making a decision about my health.
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Avatar universal
Just another two cents here.

What about the member who posted about her mother years ago having endimitriosis and docs saying it was in her head?  Was she smart for taking their knowledge and experience as truth?  Or docs dx'ing IBC (inflamatory breast cancer) as bug bites?

What about my father who kept telling his docs there was something wrong in his throat for four years, being told it was all in his head and when they finally got around to checking it the doc came back in crying to say it was too late.   He died a few years later.  Would he have been wise to take their word as gospel or smart to keep complaining?

What about me all those years I kept complaining I was oh so tired allll the time (and other things) and being told I was lazy or just looking for a dx?  Would I have been smart to stop looking for an answer?  Sorry but we are talking bout my answer right now and it is a very real thing.  Might not have been proven all those years in the past but we all now know it is very, very real, then and now.

I believe anyone who puts their health entirely in the hands of a physician is foolish.  Listen to them, gain from their knowledge, training and experience but don't hand your life over to them.

We will never know everything about our bodies and our health.  History has proven that.

Gonna be quiet now.

miss
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Avatar universal
I am wondering where you get the information that when VX950 hits the market that it won't be used with Riba? The trials are being done using Riba and Interferon so the treatment data is based on VX950 used with the current approved tx, IFN and Riba. I read fast track status was granted based on it being in addition to IFN/Riba which has already been FDA approved for the treatment of Hep C. In order to have the treatment approved w/o Riba they have to run trials w/o Riba and go through the regimen of approval without fast track status don't they?
Do you have a link to this info that Riba will be eliminated?
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Avatar universal
If people are lead to believe this new drug treatment is a stand alone tx and in reality they will have to take it in addition to the current drugs, they need to be aware of that and not think INF/Riba won't be a part of the treatment protocol when and if the drugs do hit the market. If they are trying to avoid side effects from IFN/Riba by waiting, they need to know IFN/Riba will still be a part of the tx with the new drugs. Even if the treatment times are shorter, which we don't know yet, it will be an add on to tx at this point. It hasn't even been tested in trials w/o Riba.
It is a major health decisison to tx or wait and if the only reason they are waiting is fear of tx sides, waiting won't allow them to avoid the current tx sides, they will just have another drug to add to it.



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Avatar universal
Thanks Chev, you are one of the folks I was referring to when I spoke about coming back here and giving back after tx.  Even after we achieved SVR, we came back to share. Paying it forward . . . It's great that people can express their opinions and experiences here.  What's not okay is having our integrity questioned.

-cbee
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Avatar universal
Right. I do believe in the axiom the further you fall the harder you land. I started treatment as a 58 year old who felt and looked in his 40's and ended up as a 59 year old who felt and looked older than his age. Hopefully, there will be some reversal but the mark has been made. For those who say about the protease inhibitors -- but it's still the same ole peg and riba mixed in -- I say, yeah, but hopefully for not long and in the meanwhile hopefully for 12
instead of 48 plus weeks for some of us.
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Avatar universal
I said if a person is choosing not treat due to fear of side effects from current meds available they should know that the current drugs in trials that you all are referring to, the protease inhibitors or VX950, are in trials being tested WITH IFN/Riba. You can not then change the protocol and release it to the public WITHOUT IFN/Riba unless and until trials have been done on VX950 WITHOUT IFN/Riba.
Maybe someday they will test it as a stand alone drug, but that is not what is in the pipeline now, what is in the pipleline and being tested is VX950 AND IFN/ AND Riba. There is a trial slated to begin testing w/o Riba in Europe, but that has no bearing on those in the US because until it is FDA approved it won't be available to us here. The trial for VX950 w/o Riba hasn't even started yet. It is not conjecture, it is FDA regulation.


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Avatar universal
Enough already, Kalio.  I sat by while had the nerve to question our credibility -

"These "long term " side effects that people claim are from tx are just that, claims. You do not know if the people having these problems had them before treatment or if they appeared due to their being middle aged or if they are somehow related to the treatment. You do not know if the person making the claims is now using alcohol or other medications or eating poorly or is overweight or taking other drug therapies . . ."

Now I'm just tired of your glorifying what your doctors say as gospel and putting down internet forums.  HELLO, YOU ARE ON ONE!  If you feel like all we have to say is bs then why are you here?  

We are here to share experiences and to educate and be educated as to what WE are experiencing.  The frikin doctors didn't do the treatment - we did!!!  Please enough all ready!  So many of us have been here for years, coming back to share with others - to give back because we have truth - which we have all been desperate for because Hep C has been treated as such a "dirty" disease and because we don't always get straight answers from the doctors.  A lot of us don't talk about it except here where we feel safe to open up about our experiences.  

Please if you can't respect us for our truth then please head your doctors' advice and get off this forum.  If your only need to be here is to defend what YOUR doctors say about the tx I for one heard it all before in other doctors' offices as I'm sure others here have too.  This is a patient-to-patient forum.  I shouldn't have to defend my tx issues, post sides, etc. to you or anyone else here.  

-cbee
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