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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
40 Responses
Avatar universal
DId these probems begin 6 years ago after you finished tx or are they appearing now?
Avatar universal
Sorry you're not feeling well. Here are some recent threads on long term lasting side effects of treatment, you are not alone. If you take your time and scroll down the page, you'll probably find more. Hope you start feeling better.

http://www.medhelp.org/forums/Hepatitis/messages/41446.html

http://www.medhelp.org/forums/Hepatitis/messages/41492.html

http://www.medhelp.org/forums/Hepatitis/messages/41434.html

-- Jim
Avatar universal
Hi thanks for responding
In Sept. of '03 (3 yr after tx) I drove myself to the hospital thinking I was having a heart attack...had all the symptoms etc. I was admitted overnight for tests and learned it was an anxieity attack. At the time I was taking Welburton, after taking Zoloft for my treatment years, body became tollerant to that & was put on Welbutron (8mo.)...My doctor advised me to stay on the anti-depressant and take adivan for the anxiety attacks. I decided to quit the anti's and have been using the adivan when needed and NOT nearly what my doctor advised me to take... I use exercise to keep my attitude positive but sometimes I succumb to life's stresss and need the adivan.

Now I'm in a nasty stressfull divorce, going to trial and need to provide evidence that I do indeed have anxieity attacks.My doctor doesn't have the time to testify so I'm trying to provide my lawyer with studies, along with my doctors conclusion to prove my case....Gees...I did't know where to start so here I am.
Any help is greatly apprieciated.
Thanks to you and all here.
Poz
Avatar universal
Most of us who talk about post-tx sides refer to issues which presented DURING treatment and failed to resolve AFTER treatment.  I sympathize with your situation, includng the horrible stress of going through a divorce, but I'm not sure you'll be able to construct a solid enough case that points to tx as the culprit for current problems with anxiety.   The literature on post-tx effects is nigh to non-existent--I know, I've tried to research it.  Can't a case be made for current psych vulnerability, without identifying the cause?  At any rate, best of luck to you getting through this hard time..
Avatar universal
Sorry you are going thru such stressful times. I would think it would be difficult to prove that your Interferon treatment was causal to your ongoing issues if they didn't begin until three years after you completed treatment. I don't understand why you need to connect the two events to prove you have anxiety? Wouldn't the doctor treating you with anxiety meds cover it in your medical records? How about the hospital records from 03 that show you were diagnosed with anxiety at that time? As Califia stated, it is nearly impossible to find studies and information on lasting side effects from the treatment.
good luck with it
PS. might be time to use those anxiety meds to help you deal with this!
Avatar universal
I agree with the others that doubt you can make a case associating tx and your present problems. cognitive function suffers with hep c infectioN also, so someone could argue that yours could have happened due to hep c. as for the anxiety, 3 yrs post tx is too long to make a good connection to tx.

"I've yet to "meet" a person that doesn't have problems post-treatment, directly due to the combination of peginterferon and ribavirin."
I hate to tell you that you do know someone! The problems I have post tx were there before tx, I have yet to find a problem  directly related to the meds, and only the meds, that I am now experiencing.
I am sure there are more like me, and I wish they would hang around in the boards.But lately, I can see why it is not to their advantage to cling to hep c boards, although it could help others ( to hear their lack of tx related symptoms)
Avatar universal
Thank you all...I'm not trying to blame treatment nor would I ever have NOT treated..I have had a SVR for over 6 years and hcv is one of the few things I worry about (but it always will be on the back on my mind~I'm the 3rd. generation to have liver disease in my family).
The hospital is mailing me my records from the '03 visit. They can only send what tests were ordered. My doctor's receptionist is copying the reords they have along with his dx. and recomendatiions.I feel these anxiety attacks are left overs from my treatment...I did mega doses (7mo. 6u interferon) and then 52 weeks of combo and am a 2b genotype. Never had any problems like this before so I do think it stems from that however it really doesn't matter in proving it a disability from hcv or just a bad relationship....either way thier both ending !
Thanks for all the good information...Someday we'll be able to look back at all this and know what to expect with all the information need.

Thanks again.
Pozzy
Avatar universal
Please tell us more about the previous generations in your family with liver disease.  Do you suspect that they also had HCV?  Were their infections prior to antibody testing for HCV?  I am curious because I believe that many more people out there may have HCV from familial sources, and that sometimes the infection just takes years or decades to 'materialize'.  I think there were probably many who suffered with HCV before there was a specific medical diagnosis, and many probably died of HCV liver related causes, or other HCV related extrahepatic causes (stroke, heart disease, etc).

Your situation is very intriguing, and raises lots of questions.  Also, do you know how you acquired the virus?  Can you definitely pinpoint the time and cause, and was it one of the standard risk factors fro HCV?  (Injection Drugs, Transfusion, etc.) Or could it have been passed on by a family member?

By the way, many of us have indeed developed a number of symptoms and problems AFTER tx, that did not exist before, nor during, the many years of HCV infection.  There seems to be a pattern to post-tx problems, even though many seem to NOT suffer these problems, the ones that do all seem to have a similar group of symptoms.  More and more we are seeing people post on this forum regarding serious after-effects from interferon/ ribavirin therapy.  I personally believe that most of the problems can be directly attributed to tx, and a number of doctors that I have consulted also agree.  The ones that do not tend to agree seem to be the HCV doctors.  For some reason they seem to feel that post-tx after-effects are very rare.  This board contradicts that opinion every day, it seems.  Also, ask a few rheumatologists who have seen post-tx patients what they think caused the problems (like neuropathy, skin disorders, depression, autoimmune problems, extreme fatigue, anxiety, sun sensitivity, joint problems, etc. etc.)

I am happy for those that have no post-tx problems, but I have to politely say that they often have no clue as to what the tx can do to many of us.  Just because they have had no adverse reactions, they now believe that everyone else who has this experience must be suddenly 'ageing', or suffering some "hidden, syndrome that was there just waiting to be 'triggered' by doing tx".  Of course these problems seem to appear just after completing tx....coincidental isn't it?

I am pro-tx, by the way, and would do it again.  I am happy to have killed the virus, and saved my liver, etc.  But, we must be completely honest about the downside of tx as well.  The drug companies certainly are not going around publicizing the negative effects of their drugs....but if you read the fine print, you will find most of these post-tx problems somewhere in their literature.  We need help with these after-effects, and viable treatments.  Until these post-tx problems are acknowledged by the HCV medical community, we will not have much in the way of treatment or research to that end.

Please do follow up with us, and tell us more about your history, and family background with liver disease (HCV?).

Best of luck to you.

DoubleDose
Avatar universal
What was the Question?
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.
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
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.
107513 tn?1232286464
Yeah, I just had to chime in here....Your Dr is full of [email protected]!!! 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..
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!
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
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.


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.
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
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?
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.



Avatar universal
Good point and very logical. I did experience anemia during the first twelve weeks because of the ribavirn as well as gastro problems. But my skin, sinus and chronic infections didn't start until after week 12. I can only speculate, but my guess is that if I only treated for 12 weeks I wouldn't now be experiencing what I am post treatment.

12 weeks is already accepted by some as a viable route for geno 2's and 3's with RVR. Hopefully, the Vertex and similar trials will show it to be a viable route for all. So whether the protease inhibitors be used with peg and riba, just peg, or alone -- 12 weeks -- at least to me -- suggests less sides, both short and long term, than the 48 weeks plus many of us geno 1's do.
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.
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.


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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