Hep C Discussion Forum

Zlikster · Guru

RE: Long-Term effects of Interferon/Ribavirin

GodsGrl · Senior Member

Can't say I'm not a little bit freaked out after hearing all of this, I know it's reality but..... Like my husband always says, "You don't like the truth huh girl" :)

Judy S · Senior Member

That's one of the most difficult things about tx...what can we afford to live with, as far as sx? It's always weighing the benefit with the risk. Hard to do, as we don't know what our sxs will be until we are on tx. And at times they change, as well. I couldn't tolerate the interferon; hospitalized me twice via ambulance. Had to stop in middle of Week 23. Remained UND from Week 8 of tx through 4 weeks post. By Week 12 Post, it was back. Interferon-free tx should be avail by Dec this year or next year...will try again, then.

Zlikster · Guru

Thanks Judy for sharing your experience...i am now even more anxious. You are third person that says it had tinitus side fx. And they dare to say there is a 1% chance of tinitus sfx? ;/ Tinitus is the biggest sfx issue for me...i can loose all hair, get rashes all over, be fatigued and anxious to the max...i just can't afford having louder tinitus that i have it at present, it would make me non functional for my job and i can't afford to be 6 months out of work (not to mention scary thought to be out of my work area for good).

Whats the situation with your fight? relapsed? ;( waiting for new meds to be available?

Judy S · Senior Member

I was introduced to anxiety on a new level during tx. I'm 5 months post tx and still having to take Xanax daily. I know it was brought on by tx; it's listed as a common side effect.

like_some_ideas -- I also got tinnitus very badly during tx. Pulsatile Tinnitus. It went away after tx, though I've experienced it twice, since, but not nearly as badly.

hrsetrdr · Guru

news wrote:
For my part, I am six months post, and I still have dry skin, cracking nails, coarse hair with itchy scalp, I am still just a little too volatile and moody at times, I feel spaced out a couple times a week, and my joints and muscles are almost always sore. If I sit still for more than a half hour, I get molded in that shape and have to break loose. But you know what? I would do the treatment again if I had to.
None of us knows what is coming in the next couple of years, but the new drugs in test right now sound exquisite when compared to what we have today. If you have to go another round, maybe it will be easier. And no matter what, I'll be riding herd with you as you go.
So it boils down to a personal decision to take risks or not. And the odds are not always that great. But we do it anyway.
Waiting for March, 2013,
Alan
Alan, I am thankful for your support, and that of so many others here. With community such as we have here, we can bear the unbearable, and conquer the formidable challenges of HCV treatment.

Zlikster wrote:
makes sense!

i hope it's gonna be UND in 2 months time...is there any chance you can with diet n supplements up the chances for UND?

people were curing HCB here during the war time with just fresh goat whey liquid (and fresh cheese)...

I don't know, but I'm just trying to eat and drink and be as liver-healthy as I can. I still push myself to drink A LOT of water, exercise obsesssively(DaveSF is my role model); of course, no(never!) alcohol, tobacco and avoiding 'junk' type food.

Phil G · Senior Member

Hard to say when. During tx, I was so focused (obsessed) on other things. Some of those things obviously disappear post tx, and all of a sudden, there's something else, like tinnitus. I have crickets, more of them and busier than before, meaning amplified and constant. Not that big of a deal, really. Hep C free, and it forced me to get the aids I've needed for a while. I'm too lazy for anything like active retraining. Doubt that I would have stopped tx for it if I had connected the dots. First things first!

Zlikster · Guru

Hi Phil, when did your persistant tinitus occured? during tx? after? Would you say tx amplified your previous tinitus or just made it constant? i have heard for some tinitus neural healing options (not masking, yet neural unlearning), tho it is available only in Germany. Havent checked in a long whats new re tinitus in medical world. i guess my is light one (high pitched, both ears, only hearing it when i am quiet condition like in bed). i woud definetly stop with tx the moment i feel my tinitus condition gets worse. my ears are my essential work tool, i can not afford to damage em more ;( thanks for sharing your case best

Phil G · Senior Member

I have had tinnitus for quite a while, but it was off and on, loud and quiet. Until tx, that is. Now it never stops and is generally loud, bad enough to affect the crappy hearing (speech recognition) I have left. But it seems tx has also left me with a little more humility and acceptance. So I just bought those hearing aids I said I would never get. It is an improvement. The tinnitus is still there but not near as noticeable. And when I turn off my selective hearing, I can understand most women (the words only).

Zlikster · Guru

makes sense!

i hope it's gonna be UND in 2 months time...is there any chance you can with diet n supplements up the chances for UND?

people were curing HCB here during the war time with just fresh goat whey liquid (and fresh cheese)...

news · Guru

Yeah, Tim, your story opened a whole new vein in my attempt to get my head around all the science in our treatment protocols. When your doctor stopped your treatment because of the eye troubles you were having, I was at once very happy and very sad. Happy because your vision might be saved for a normal life down the road. Sad because you might risk your incredible performance to that point.

Recently I have begun reading a lot of scientific reports and press about long term effects of what we call peg/riba. The interferon alpha and ribavirin ****tail, with 180mcg of interferon weekly and a ribavirin dose of about 1200mg daily (based on body weight) has caused some really bizarre long term side effects in a small minority of patients, many of whom insist they were not warned of the possibility of such ill effects. It is very common to see dosage reductions for various reasons in the middle of the period. And this doesn't include the fairly new "triples". For my part, I am six months post, and I still have dry skin, cracking nails, coarse hair with itchy scalp, I am still just a little too volatile and moody at times, I feel spaced out a couple times a week, and my joints and muscles are almost always sore. If I sit still for more than a half hour, I get molded in that shape and have to break loose. But you know what? I would do the treatment again if I had to.

None of us knows what is coming in the next couple of years, but the new drugs in test right now sound exquisite when compared to what we have today. If you have to go another round, maybe it will be easier. And no matter what, I'll be riding herd with you as you go.

So it boils down to a personal decision to take risks or not. And the odds are not always that great. But we do it anyway.

Waiting for March, 2013,

Alan

hrsetrdr · Guru

Zlikster wrote:
Hi Tim, why so long for next VL results? i thought it usually takes 1-3 weeks for results?

My health care provider(Kaiser Permanente) did VL labs 5 weeks after I stopped treatment( click on the links in my sig-line) but the way (I guess) that they figure it is this: since no FDA approved alternative treatments are currently available, then there's no real hurry to repeat the VL labs, until 6 months after stopping treatment. That puts my six month VL check at around the first or second week in March; If at that time I am still UND, then we can jump up and down and declare me SVR. biggrin If at the six month VL lab I am no longer UND, then there won't be any party, and I'll still have to wait a couple years for an FDA approved treatment.

As curious as I am to know, I am thinking that if it is going to be bad news, then there's no hurry to get that bad news, because waiting for another tx is going to be a couple years away regardless. So, I've got two more months of not knowing, but that gives me two more months of hope.

I hope that that makes some sense.

Zlikster · Guru

Hi Tim, why so long for next VL results? i thought it usually takes 1-3 weeks for results?

hrsetrdr · Guru

Zlikster wrote:
hrsetrdr, will they now consider you for interferon free clinical trial?

i have tinitus (semi light hi pitched one) for 4 years now, i assume i got it from my professional exposure (loud PA), i have had eczema on leg for lasy 5-6 years (not so severe), now its almost completley gone...could it be that HCV can trigger skin reactions? I am really afraid that i will hit that 1% chance to get even louder tinitus, that would definetly hurt my work ability a lot ;/

this is kinda alarming that so many people have serious issues after tx. Not to mention, building my anxiety to the max cause tommorow is my tx visit to hospital, will try to push first shot for Fri tho...

will anyone convince me maybe to wait few years until DAA only (or DAA+Riba) therapy arrives? think i am too late to opt out now tho...

I doubt it, but then I don't yet know if I'll need further HCV treatment, I won't have VL labs until mid March.

If the VL test is positive, I'll just be waiting until one of the Interferon-free treatments is approved, which may happen sometime in the next couple years.

Zlikster · Guru

hrsetrdr, will they now consider you for interferon free clinical trial?

i have tinitus (semi light hi pitched one) for 4 years now, i assume i got it from my professional exposure (loud PA), i have had eczema on leg for lasy 5-6 years (not so severe), now its almost completley gone...could it be that HCV can trigger skin reactions? I am really afraid that i will hit that 1% chance to get even louder tinitus, that would definetly hurt my work ability a lot ;/

this is kinda alarming that so many people have serious issues after tx. Not to mention, building my anxiety to the max cause tommorow is my tx visit to hospital, will try to push first shot for Fri tho...

will anyone convince me maybe to wait few years until DAA only (or DAA+Riba) therapy arrives?

think i am too late to opt out now tho...

Bills · Guru

My 2 cents,

I think it's very likely we will experience changes due to the drugs and they may be long lasting. I don't have a lot of backup research for this. I definitely have brain fog and worse than I can ever remember. Someone mentions psoriasis yup I "had it when I was 19 - 21 but it went away ) and appeared again about 14 months ago in treatment ( not as bad but is there ) Tinnitus very bad and it seems to get progressively worse. Depression ? I've had that since I was about 15 untreated till I was about 35 I didn't want to believe that but I take Wellbutrin When I stop I crash. So I'm stuck with that one. Can't say I get anxious as much as restless. I stopped complaining about it cause nobody seems to be able to anything for all this. And if it is Inerferon & Riba what can I do stop? I need to stay UND and get to SVR. I'm hoping to tackle some of this when I finish in July. I keep an eye on it but I'm to scared to quit and loose all this time. When I asked for a real answer I've been told there is not enough documentation and years of collection to positively Identify the long term yet. So It may not be a good answer but If I got permanent damage whats the worst of the 2 evils?

greenqueen · Guru

Hi folks,

Underthewave, you describe exactly the feelings I've had since tx. I was always a very active and optimistic person too and it's as though my personality changed in some way. Also, Tim's comment about anxiety responses to situations is a problem that occurs.

Zlikster, your post about HCV affecting the Central Nervous System has been studied and there is a connection. Hep C is not just a liver disease and as more research is done, the more apparent this becomes. I posted this presentation a while ago which makes for interesting reading:

http://hepcfriends.activeboard.com/t38755598/the-impact-of-hepatitis-c-on-the-whole-bodysimon-taylor-robi/

The "chemo brain" that cancer patients describe only seems to have been recognised in the last couple of years and various articles have appeared on the subject. Prior to this, patients were more or less told it was "all in their head". Similarly, post-tx problems such as cognitive issues have been dismissed by many in the medical profession, though more people are speaking out about this now and we can't all be imagining it! I think that folk felt they were going to be perceived as being "negative" about tx if they spoke about their experience, but people should be fully informed of all the possibilities when they are about to embark on a course of very powerful meds. I've posted a few things in this section regarding post-tx issues, along with some surveys.

Steff xx

like_some_ideas · Newbie

Hi ... my first post!!!!

I finished my 6 month Ribovarin Interferon treatment 1 1/2 years ago. These are the long-term issues I'm dealing with:

Tinnitus -- I started getting this during treatment. Interferon is a known audiotoxin and many people experience tinnitus during treatment. With most people, it goes away after treatment. Mine has stayed with me and has never let up. I pretend I live next to a hydro plant -- hummmmmmm! My Canadian specialists told me this only happens with 1% of patients and basically there is nothing they can do. Wonderful ...

Psoriasis -- This started a year after my treatment ended. I have it on my hands and feet and have been using Dovobet creme. Psoriasis is caused by an hyperactive immune system, where cells reproduce at very fast rates. There is no known cure ... sigh

Stiff Neck --Started a year after treatment. It's a bit of a stretch to include this in long-term effects, but I've never had neck problems before and nothing in my lifestyle or habits has changed.

Other than that, I'm okay. I have an excellent diet thanks to my wonderful wife, I don't smoke, I exercise three times a week and am psychologically dealing with these issues okay (I hope ... lol).

Anybody else having any of these issues? What are you doing for treatment? Am also interested in any naturopathic approaches.

Look forward to any helpful answers.

12Step Guy · Senior Member

I certainly wish we knew more about long-term effects. Being overly emotional while on them is fairly standard. However, we all are vulnerable to stress and depression as we proceed through life. I'd suggest seeing someone and keeping an open mind to the suggestions. I'd associate noticeable increases in anxiety sooner after ending treatment then years later.

But I do wonder if there is a type of Post Traumatic Treatment Syndrome that occurs with having spent months with a depressed immune system, chronic fatigue and some depression. Since 1999 I've spent about 35 months taking Riba and Peg. In many ways it is like the isolating and defensiveness that I developed while using alcohol and drugs. Learning how to take risks again and seeing myself a healthy might be a challenge for me in the future. To what degree do we get used to being sick and tired? So much so that it seems a friend?

hrsetrdr · Guru

underthewave,

First on all, congratulations on your conquering the dreaded HCV monster. Like you, I have anxiety reactions to situations that, prior to treatment, would not normally trigger such response(s). I cannot say for certain that interferon and/or ribavirin(or perhaps the HCV virus itself) is responsible, all I can say at this point is that I believe that to be the case. I had to halt treatment prematurely due to damage to my right optic nerve, caused by interferon; that is a verified medical certainty. So, I know that my body is sensitive to the drugs, and as such, the idea that neurological damage to other areas of my nervous system doesn't sound too far fetched.

I am still searching for answers, I hope to someday(soon) be back to 'normal', and be anxiety-free, without the need for meds. Good luck to you.

underthewave · Newbie

Thanks folks. I'll wait for any additional comments, but it seems I'm not alone in this.

Its true that there have been a number of life changes in these years and some difficulties causing worry over adult children, but I've never before had issues of anxiety and 'low feeling' with all of the ups and downs of life and relationships.

I have always done the job of self-monitoring and awareness and this experience since the 'therapy', is out of whack with any prior experiences.

I am by nature very positive and optimistic, full of energy and very physically and mentally active. I was into endurance athletics and always engaged in a number of activities. The folks at the clinic said "you are the healthiest hep-c patient we have seen". They were referring to both physical and attitude.

I am still relatively active, but not as before. I have also wondered if metabolism is a concurrent contributor.

Not sure if that makes any sense...I hope so.

Zlikster · Guru

Hi greenqueen,

do you personally have anxiety issues like underthewave too? If so, do you mind and share some details re manifestation/occurrence?

I wonder is anyone doing research in long term brain change after Interferon/Riba usage. As i know Ribavirin molecule pass blood brain barrier, not sure does Peg-Interferon can do that too. On other hand some research points that hcv itself can (sometimes?) croos BBB and do damage to neurons? http://www.hepatitis-central.com/mt/archives/2010/10/new_study_finds.html

i will ask my hepatologists more on Wed re this issue.

all the best

greenqueen · Guru

Hi,

I can relate to what you're saying and I also personally know others who are having similar problems post-tx, who also cleared the virus. These are powerful drugs and as with most meds, there are going to be some people who will be more sensitive to the potential side effects.

Here are a couple of links to the package inserts for Interferon:

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/PegIntron%20Med%20Guide%2009.pdf

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Pegintron%20label%20update%20July%202012%20.pdf

Steff xx

underthewave · Newbie

As far as any pattern, no not really. Sometimes anxiety attacks come when I should be relaxed under circumstances that I very much enjoy and at other times way out of whack for a low stress-stress situation.

12Step Guy · Senior Member

I'm no expert (and by the way four years clear - Wow). Anxiety isn't always a chemical or physical condition. Anxiety is usually defined as unrealistic fear of future events. This is different from panic attacks which also create extreme "anxiety" but it is a different condition. In each situation, the causation rarely is significant to the solution. It just might be that like everything else, we just need to keep working on ourselves and see this as part of growing, rather then interpret it as pathological.

Zlikster · Guru

Hi there,

i am about to get on therapy and i am pretty much anxious about long term effects. I have been reading about chemo brain, a chemical change in brain after chemo therapy that leaves people in long term with "foggy brain" and anxiety attacks. Seems like hcv tx is doing same thing.

Have you noticed any patterns in anxiety attacks or it's just random?

all the best

underthewave · Newbie

Hello folks,

Its been 4 years since I finished the therapy and I was cleared. My counts were very high and my liver 50% fibrotic.

I have 100% function and am still clear.

I have zero history of anxiety or depression and have no history of substance abuse.

Ever since the therapy, or at least it seems as though this is a 'cause', I have been struggling with anxiety. At times it has been hard to deal.

Depression--I don't think so, or maybe I'm adept at convincing myself this isn't in the mix.

Anyway--I've been wondering if I'm mistaken about the 'therapy' as a cause. I have imagined that a chemical change has taken place in my brain.

I've considered that because the 'anxiety' can come on powerfully without any apparent external triggers. It feels very strange and as I mentioned, can be nearly impossible to manage.

Thank you for any response.

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