The Long-Term Side Effects after Tx Thread, for all

[DoubleDose]

I wanted to post a thread that could serve as a main point of communication for all of us who have treated and suffered serious, life altering side effects AFTER finishing therapy.  Hopefully questions, issues, personal experiences, and the feedback each of us has received from doctors can all be a part of this thread.  There seem to be two or three new separate threads each week relating to this subject, and I am not sure anyone gets the benefit of the postings on all of the related threads.  Maybe we can each use THIS thread to deal with this subject, and then all the inputs might be accessible to everyone interested, all on one single thread.  It also would be a good way to get a better idea of the numbers of us affected by this problem.  And specifically this thread pertains only to side effects experienced AFTER completing tx, that were NOT apparent before doing the therapy.  

Feel free to comment, ask questions, or state your own personal experience with this issue.  And lurkers out there, who have not joined in the forum conversations, please do feel free to jump right in.  It would be very helpful for all of the affected group to be able to compare notes, and connect with people who have a similar challenge.

[DoubleDose]

And a question to kick off this thread is this:  how many of the people who have developed side effects after tx have noticed changes in really core functioning...such as problem solving, brain function, memory and thought processes, walking and gait disturbances, strange feelings in limbs and spinal area, like burning and numbness, balance problems, and severe lack of any kind of normal energy, along with periods of lapsing into almost a 'narcoleptic' state, where you feel almost detached from your surroundings and drifting into a 'dreamy' trance on and off during the day?  Please feel free to add or elaborate on your symptoms, and which are the most difficult, or frustrating.

DoubleDose

[Jillybean65]

It would also be helpful if they posted what treatment they had, genotype, and length of treatment and number of times they went through it... :0)

[DoubleDose]

I am "transplanting' your post to this updated thread, so that we can use this for the interactions on LongTerm sides.  Here was your recent post:

by goldcoast70860, 1 hour ago
To: DoubleDoseYou made the comment that about having studies done, I wholeheartedly agree.  I was treated in Australia in 1999-2000.  I had prevously been treated in the US with Interferon at the standard dose of 9 mil units a week, 3 mil on Monday, Wednesday and Friday - what a rollercoaster.  I tolerated that treatment as far as I can remember but in 1999 my treatment started in Australia, where they actually do "experimental" trials, your treatment isn't mandated by your health insurance like it is in the US.  I was on 7 mil units of interferon and 800 mg of Ribavirin DAILY.  The possible side effects was in the little box with each vial of interferon.  It was written in such small prints I had to read it with a magnifying glass and it was double sided.  After a few months on treatment I thought I had just about all the side effects but after treatment many of the side effects went away and I felt pretty good but I never got back to normal.  My thinking and decision making was foggy, fatigue set in, I became anxious and lost weight.  I could go all day and not even think about eating, I make myself eat now and try to have a decent diet.  My joint pain has slowly gotten worst and I have a bad back from a previous accident.  I haven't worked in quite a while but I am alive which may not have been the outcome if I didn't do the treatment so what's the answer?  I would like some bona fide information about the long term effects, certainly there are enough people out there who could start a campaign to find out how to do this.  What are the long term effects, what can be done to help deal with them and what percent of people have them.  These are things that I would like to know. Who does this type of research?  On a different note I see many acronyms used that I don't recognise like SOC,DDA,tx and SVR.  When I was on interferon my dose was always in Million of units.  Can you tell me what these acronyms mean and how do they describe the dosage, even in the US I was told I was taking 9 million units of interferon a week but I never see that term used.  I hope this can help and I would be willing to do whatever I could to start some sort of campaign started.  Kindest Regards - Ron


DoubleDose comment....  I will try to give MY take on your question s later when I get back home.  Have meetings today.  Thanks for your follow up!!!

[willbb]

Should have put this here....

by willbb , 5 minutes ago
To: DoubleDose

Sorry to hear you are having such a hard time post tx.I see you have been around here for a very long time and I imagine you have seen more of your share of posts from folks discussing their problems with a whole array of things post treatment.

I am one who believes that any drug we take .be.it any OTC  or any prescribed meds are going to have side effects.Obviously some of these are fairly benign in nature and others much more severe. However I guess with any thing we take ,the benefit must always be weighed against risk.

Interferon ,is certainly a powerful toxic drug.. you would think it would have to be to do what we are asking it to do....kill millions of virons  that have evolved and got very strong over thousands of years. It would be extremely naive to think that taking this for as long as we sometimes do would not have any adverse effects on us and sometimes long lasting and fairly serious ones.

However the fact remains that for many people this drug works...to rid us of a potentially life threatening disease,so again benefit vs. risk.

I don't really understand how you would think that Pharma is about to spend hundreds of millions of dollars to do any studies to tell them what they already most probably know...that the drug they sell us for huge profits has adverse affects. Especially in light of the fact they also know their is currently tens of millions of people lined up as we speak ready to purchase this drug.

However do we not have to give them some credit for currently conducting trials to get this drug out of the mix for treatment of HCV.

My post here is not to minimize the way some folks are troubled by after effects of treatment and I am certainly not one of the so called naysayers of the harm they may cause., however the fact remains until the meds get safer and more efficient this particular med is saving lives

New people to this site and I hope you would agree should certainly know that tx.drugs may have side effects and that may even be long lasting .however the other side of all that is the eradication for many ,of this nasty virus.

I don"t usually do a long rambling  post like this..and my apologies for such..I just wanted to throw my cent in   ..also  to anybody new that is interested I have had NO residual side effects from treatment...albeitI I only treated for  17 weeks ..  so maybe not a true gauge however the 18 shots of interferon I did do did not seem to harm me  and   fortunately I know there are othes in my situation...so there is another side to the story.

Again ...just my 1 cent

Will

[Trish77]

While I understand much of what you're saying, I don't understand the concept that we're fair game for any side effects that come along from a drug that is FDA / Health Canada approved.  There are a number of cases where additional side effects came along after a drug was approved, those side effects were reported by patients and doctors alike and the drug companies did nothing.  Those same drug companies were then fined for knowingly putting the public at risk when additional information came to light about potentially harmful aspects of drugs on the market.  There are other cases of approved drugs being pulled from the market or having black box warnings added to them as a result of new information.  This new information would come from patients who were using these drugs and the doctors that treated them.  Thankfully these reports were made for the benefit of others coming along who would also be using these drugs.  Health Canada has a mechanism for reporting new side effects from drugs on the market for this reason.  Clearly nobody expects patients to just put up with whatever new side effects come along but

Certainly one weighs the benefits vs the risks.  However, I don't see how we're helping people truly evaluate the benefit vs risk equation if we don't continue to report on side effects experienced from the drugs we're taking, not just interferon.  How do you pick and choose what side effects to share with people when they're asking their risk level?  We talk about the potential for depression and auto-immune diseases, why not talk about other side effects that come to light with continuing usage of interferon?  That seems only prudent and responsible to those coming along after us.

We're not able to run our own clinical drug trials and we depend on the legitimacy of those FDA / Health Canada approvals and then I think it's our duty to report side effects that could be harmful to others.  I think that as other potential side effects become known, they should be reported and it should be reviewed by the appropriate bodies and if found to be a true additional side effect of any drug, including interferon, it should be included in the literature we review when we're assessing benefit vs risk.  

It's certainly a challenge to present the risks associated with interferon in a correct light that doesn't unduly scare someone but also properly informs them.  Difficult balance.

[willbb]

Yes I agree there is both sides

[willbb]

Sorry trish ..did you list your sx here...that is what this post was for....I put mine up...there really was none

[Trish77]

Right...missed that part. Thanks Will. :)

Side effects remaining after treatment - 2 years after SVR, I have painful joint pain that I didn't have before treatment.  It's very painful going down stairs, lifting myself out of a chair and getting up from a kneeling position.  This is a HUGE difference pre and post treatment for me.  This is not a complaint persay however I've read enough posts from people experiencing this kind of post treatment joint pain that I think it should be acknowledged.  Having said that...could be part of the thyroid issues that treatment triggered...hard to say..there is simply joint pain and significant at that.

I have permanent Hashimoto's thyroid that I didn't have before treatment however I allow that I might have developed that eventually only that I believe the  interferon brought it on sooner than it might have otherwise.

Treatment was 34 weeks for me and with a trial drug included.

[willbb]

    " getting up from a kneeling position."   maybe think about stopping or cutting down on this activity :)

[Trish77]

As in...just stay on my knees??   Thanks for the suggestion...I think. :-\

[desrt]

I think that until there are massive studies involving thousands of subjects it's going to be diffucult to pin down exactly what has been caused by tx.

In my own case I am unable to separate the several different factors that may play into my post-tx health problems:

Having carried the virus for probably close to 30 years.
Doing 23 shots of interferon.
Hereditary factors.
Chronic occupational exposure to solvents and heavy metals.
Age.

List of Rx meds started post-tx:
Lisinopril: blood pressure
Simvastatin: Poor HDL/LDL ratio (LDL O.K. - HDL way low)
Metformin ER: Insulin resistant / diabetic
CerefolinNAC: Peripheral neuropathy
Ambien: Insomnia

Each of these problems probably has multiple contributing factors. I take minimum doses of these meds and overall feel O.K. though definitely not as sharp as I was 10 years ago and more inclined to lay aroumd after a hard day's work.

"What a drag it is getting old."
Rolling Stones  'Mother's Little Helper'

[Trish77]

I suppose that's why I'm fairly confident in attributing the joint pain to treatment. I have not taken medication for anything, truly anything, in my life up until treatment except for the odd antibiotic here and there and had virtually no health issues of any kind, rarely went to the doctor, rarely got sick. I'm still in pretty good health considering.  Just have a few souvenirs after treatment.

[willbb]

"after treatment - 2 years after SVR "     " ,Just have a few souvenirs after treatment. "

  My point exactly...an excellant trade off in this case IMHO   ..congrats.

[paen53]

I did 72 weeks of higher doses throughout (SVR as of Dec. 2010). My post tx issues mirror Trish's almost to a "T" with thyroid issues and significant joint/muscle issues that I didn't have previously. They certainly don't incapacitate me, but there is a noticeable (and some days -profound) change in flexibility.

I understood that many things could crop up during and after tx - autoimmune issues, vision problems and such, but was unprepared for the pain issues. Getting an Rx for thyroid meds has helped, especially with the swelling of my knees. Also unprepared for my Dr.s amazement as to why I didn't bounce back quickly post tx.

Had a follow-up with my PCP since it's out of my liver Dr.s area of expertise and was dx'd with fibromyalgia which mainly consisted of pressing on the "trigger" point and asking if it hurt. Could it be?? Maybe, but I just don't have the chronic fatigue that often accompanies it, so the jury (me) is still out. As of today, I am not treating the fibro with Cymbalta or any of the other prescribed meds, and instead staying as active as possible - zumba, water aerobics, dancing, walking - but low impact things - regular massages and taking the odd OTC pain reliver as needed.

On the flip side, My energy level is remaining high and has been since soon after EOT. It does lead to some restless nights (or more to the point - very early mornings)  but that is only because I can't wait to start the day again - and that is a GREAT feeling.  My brain function was slow to return, but I now am beginning to see great improvements in the last couple months or so. I really am indebted to my boss for keeping me on and believing this would get better. I sure had my doubts........Once in a while I still find myself searching for a certain word, but not nearly as often as before when I cringed at having to speak in public.

I wonder if in the future as new meds hit the markets and more and more people begin to treat if more attention will be paid to post tx effects. WIll inteferon be implicated in these cases, or will fingers be pointed at the new meds in a HCV med war. We'll see......

[Trish77]

""after treatment - 2 years after SVR "     " ,Just have a few souvenirs after treatment. "

  My point exactly...an excellant trade off in this case IMHO   ..congrats."

I didn't think this thread was about if the post treatment side effects were a good trade-off - I'm certainly not looking at this from that perspective - but simply sharing information about that so that there is full disclosure and so that if there are additional side effects that should perhaps be included, they are known -  same as those patients and doctors coming forward to report new side effects on any other drug that were previously unreported so that others coming along would have proper knowledge.  Perhaps if someone started having joint pain or bone pain while on treatment and knew that was a risk of interferon they would make appropriate decisions that might otherwise not occur if the information was not available.  I'd rather not be in the dark about the possibilities so that I can respond appropriately to side effects as they occur.  

[Fnzol]

In the US, rules for conducting post-marketing surveillance studies were approved after INF and Riba had already long been in use.  The innovator companies are supposed to do the studies, but that's not really likely.  Once generics appear, it's pretty much over.  Don't expect PM studies to evaluate post-treatment sides.

The new drugs, however, are going to be subject to tighter regulatory scrutiny.  

[willbb]

again Trish .congratulations on your SVR. :)

[Fnzol]

"I'd rather not be in the dark about the possibilities so that I can respond appropriately to side effects as they occur."

Salient point.  

At the other extreme, however, are some of the posts made here by persons claiming to be suffering extraordinary numbers of complaints, with lives ruined, on disability, financially destitute, etc etc.  Sorting out plausible fact from unsubstantiated catch-all claims of ruination is the trick.  "I know it was the treatment" is not persuasive.  

[Fnzol]

^^^I should add, not persuasive without providing some thoughtful attempt to objectively associate meds and effects during treatment with post-treatment ailments.  How that is to be done will depend on the presentation made, I suppose.  We want to be open, supportive, and receptive, but we've all seen posts that clearly confuse correlation with causation.  

[willbb]

" so that there is full disclosure and so that if there are additional side effects that should perhaps be included," So..what....we won"t be taken by surprise at the end of treatment??        If the drug is so adversly altering as we think it migt be..what can be done about it anyway...We can"t hold our breath waiting for INF.to be safer..we can only hope they figure out how to get it out of the mix.  I would imagine there are very few folks here that had  had they known that there might have been more of a price to pay ..they would have said    "I am not treating" Liver disease can be deadly if let go . yes the price for some is very steep.however for those that attain SVR.I still believe the trade off is good benefit vs. risk..

[DoubleDose]

Your comment illustrates EXACTLY WHY we need large scale studies on the long term side effects of the tx.  That way the medical community will be able to objectively assess how many people experience these problems, the exact nature of the problems, and also may be able to find some potential correlations with tx length, drug dosages, number of tx'es, etc.
I really don't doubt or criticize the people who claim to have experienced life changing symptoms, because I think much of their complaints may WELL BE actually due to the tx.  We had a medical doctor on the forum recently who illustrated how her career ended after doing tx because she is now incapable of even the most routine procedures that she once undertook many times a day.  I think there may well be extreme cases out there, along with the moderate, and the minor.  I count myself lucky sometimes for falling somewhere in the middle, though some days are pretty tough.  All very new and different stuff than before tx.  Sure I hade some HCV extrahepatic symptoms over the many decades with HCV, but the post-tx problems were like a freight train running over me... along with a third electrical rail!!!  It all depends on how messed up your nervous and immune system became from the interferon, and from how many gene mutations and cellular functions were sent into hyperdrive or off the chart.

Your comment about "Sorting out plausible fact from unsubstantiated catch-all claims of ruination " is exactly what large scale follow up studies would allow for.  Why they have not been done is probably the exact same reason they have not been done with tons of other drugs that ended up having far more serious consequences than initially claimed... because the drug companies just don't want to know......they just wait until the FDA, or the class action suits file in before they even comment on a problem...and usually just to deny any knowledge!  Of course!!!  If you don't look for the problems  (as in studies) then you don't KNOW about them.  See no evil...hear no evil....   Its a plan that works well...FOR THEM!!

All I am looking for is interest on the medical communities' part, and some honest efforts to help find ways to understand the long term, more serious problems, and to find ways to mitigate them.  Wouldn't YOU want that much if a drug you took just plain 'knocked your life' right out of the box...for years and years...maybe for life?  I would hope so.

DoubleDose

[willbb]

DD : please ...you know well enough  that Pharma is only interested in profit. Do you really believe they are going to round an round again  and spend hundreds of millions on studies because we are out here complaining about what their drug does to us.

The people right now in studies with Inf.out of the mix are knowing ly or not the only people we can hang our hats on. And if Pharma figures it can make enough profit with one of the current poisons out of the mix then we have a least some hope of not being as harmed in the future.

[Fnzol]

The principal reason why I've had some reluctance to read these threads and participate in them is when there is resorting to attributing motive.  

The doctors don't care.
The companies don't want to know.  
The regulators are in bed with the companies.

Calling for studies on the one hand, I presume conducted under scientific method and with rigor and abstraction in the data analysis, and making wildass assertions on the other about why or how things came to be just don't arise from the same bed of intellectual honesty.  

[willbb]

  Well fnzol..if that wild *** assertion you are referring to is the fact pharmas interest is profit and that they won"t be doing any studies on this problem any time soon,,unfortunately ...... yes that is certainly the assertion from here.

Too bad ...you are reluctant to participate,,,seems like you have a lot to add ..hope all is well