What are long term lasting side effects of treatment?

[pozzy]

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

[Kalio1]

DId these probems begin 6 years ago after you finished tx or are they appearing now?

[jmjm530]

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

[pozzy]

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

[Califia]

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..

[Kalio1]

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!

[cuteus]

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)

[pozzy]

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

[DoubleDose]

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 (aging)', 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

[can-do-man]

What was the Question?

[hepcinsd]

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.

[cbee]

"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

[hepcinsd]

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.

[Snookmiester]

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..

[Kalio1]

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!

[jmjm530]

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

[Kalio1]

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.

[Kalio1]

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.

[MissMiss]

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

[Kalio1]

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?

[Kalio1]

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.

[jmjm530]

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.

[jmjm530]

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.

[Kalio1]

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.

[cbee]

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

[couldn't think of a nickname]

I checked in, and thought I could help some in the drug development area.

1. VX-950 is being tested in Europe WITHOUT Riba. The company is not convinced riba adds much, as just 950 and IFN got 5.5 logs in 2 weeks anyway. In fact, and this is just my take, in the study they got 12 out of 12 neg. in 28 days, but 1 relapsed while on IFN/Riba maintenence, it would appear (to me anyway) that 950 was needed longer, and riba did not pick up the slack. Of course, patient 12 might have virus resistant to IFN for all we know.

2. Resistance: VX-950 does develop a resistant strain, the A156T strain. 950 does render it less fit. My guess is, it has not been a major problem, and A156T is sensitive to IFN anyway.

3. NM 283 could have a problem if it gets tested with riba. Both are nucleoside analogs, and Piper Jaffrey notes that they might have synergistic GI side effects. No one wants riba included, and even if the next gen of drugs are approved with it, I wonder if some might opt out of it anyway. I would.

4.ITMN has a PI that preclinically, is supposed to be much better than 950, and does not have that mutant strain issue of A156T. Maybe a poss. future combo? Way too early to speculate.
What happens in the clinic is an open question. IMHO any new therapy without IFN would right now need to be a combo of new drugs, not necessarily 1 alone.

5. VRTX has a second gen. compound that is 2 years behind 950.
Companies do this because the first to market is rarely the best over time. They can learn a lot from the first one, and improve on either liver concentrations, dosing, etc. Not much has been said about this, but they are working on it.They have since said this publicly, but I pretty much new it based on this exchange with the company I had a few months ago:
Me: "Is VRTX working on a next gen to 950?"
VRTX" "We have an active and productive drug development program". I saw that as a yes, having talked to various companies for many years, and knowing their language.

6. SGP has a PI, and they hoped to get into p3 later this year, but I doubt that will happen. They recently added a higher dose to their p2, and I don't believe preparations are in place for a p3 that soon anyway.

7. BMY has a PI. A privately held biotech has a PI in development. For what we do know about drugs in development, there is a lot we don't know. But, the next gen should certainly lead to much shorter tx times, which hopefully will lead to less long term side effects.

[Kalio1]

Thanks for all the info. It looks positive for a better tx regimen in the future with many companies vying for a shot at it. I hope they are right and the Riba can be eliminated eventually.
Nice to see you. Hope you are doing well.

[hepcinsd]

I hear ya loud and clear! It really is "decisions, decisions" now that I'm clear at 4 and 12 weeks. When I told the Dr I may quit,(I am not giving up people - I just think I may have achieved SVR and feel why continue if not needed. We all know these drugs are bad for you) then and only then did he suggest lowering the Riba from 1200 to 800 or 1000 daily. I like chevy felt why cut the dose that got me this far if I plan on continuing on. I can plough thru but it ALL comes back to long term sides - that's all. If we know there  are none, I would simply fight thru the 24 weeks. Meanwhile I'm still fighting and taking my poison like a good little boy.

My 2 cents on Drs' (hepatologists/liver drs only) opinions on long term sides could include the fact that they focus on the liver and in our case Hep C. How much concern do that place on other issues that are health related but again not liver related. This is not their primary concern, their primary concern is ridding the virus which they have proven to be able to do. Do we come back and visit the "liver Dr" 2 years after tx because our lungs or stomach hurts??? Probably not, so the hepatologist that once treated you may never hear some of your long term sides. No I didn't just make this up - purely conjecture LOL!!!

Much love to all of you!

[hepcinsd]

How are ya? I am curious to start a thread that asks who would stop tx early based purely on a 3a (can do 1's also - some adjustments) showing clear at 4 and 12 weeks so we don't ingest the poison any longer than we have too. I guess more than half would continue tx in order to achieve SVR even if they felt there might be long term sides. Botton line our choice is take the Ribavirin/Interferon for the duration of the tx to maximize the probability of success and then worry/consider long term sides. It really is a SHITTY choice the more I think about. I guess at least we have that choice. What choice would you make given the scenario....I think I already know.

[couldn't think of a nickname]

thank you all, everyone be well.
To those who are clear and still suffering, hopefully you will find something to help. Wasn't it Chell who said reiki was helping lessen her sides from tx?

[jmjm530]

Kalio: I am wondering where you get the information that when VX950 hits the market that it won't be used with Riba?
------------------------------------------------------
Never said that. As you'll see from my words below I was giving TWO Scenarios BOTH of which are currently being tested in Europe in the  PROVE II trials. Here are my words from the previous post:

"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."

The link you want is here:
http://www.vrtx.com/Pressreleases2006/pr052306.html

I suggest before you become so adamant that such and such does or doesn't exist you at least do some homework. As CTON suggests, riba was never considered to be a critical element in the mix but because of a number of issues, including FDA approval, they included riba in all the U.S. trials. If the European non-riba arms pan out, look for it to be dropped from some of the U.S. trials faster than a hot potato.

-- Jim

[cbee]

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

[Snookmiester]

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?