Side effects of peginterferon alfa-2a (pegasys) and ribavirin

I know someone who participated in een drug-test for the combination of peginterferon alfa-2a en ribavirin in 2000. the test was supervised and conducted by a well-reputed clinic and sponsored by Roche Pharma. this person claims she reacted badly and has poly-neuropathy, as a direct result of these injections. does anyone of you have similar stories or facts?

[Ziggy2004]

Hi there
I had a bad time with the treatment however that are others here that have had an easier time.  Each person is different when talking side effects.  We may all get the same type of side effects but to a different degree.  I only lasted 7 weeks.  Headache, nausia, mouth and throat soars, soars around the eyes and hair loss.  
You could be lucky and have some of these but much more mild.  I don't think anyone will know how they will personally react until they try.  I believe we all have to try.
If you do, good luck.  I hope it goes well.
Cathie.

[jonihs]

I am on week 16/24. I had hardly any sides for the first 6 weeks, and then started losing my memory,Couldn,t drive, couldn' do anything except stare at the tv. Couldn't even sleep. my Dr. blamed all my sides on tx.My platelettes got low so they stopped my tx. I called my original Dr., she put me in the hosp. and took me off of the 225mg. of Effexor my other Dr. had put me on.  I didn't miss 1 pill or one shot and within 48 hrs. Almost all my sides went away. I still feel tired and sleep alot. (Normal side) and somedays I don't have much of an appetite, but Carnation Instant Breakfast helps those day. And I am 6 weeks closer to finishing, now.  Joni
              P.S. She put me on 10mg.. of Lexapro & that is working fine.

[britgirl]

I just did a Google search on "polyneropathy and interferon" and you will see there are several cases of tx for hep C causing this.This treatment has several permanent side effects which, luckily, remain rare. This is why so many of us find it a difficult decision whether or not to treat, and maybe to end up with a new problem. I was "lucky" in that my permanent problem was hypothyroidism, which can be treated with supplements. Others are not so lucky.

[twotells]

I am on Pegasys, wk60 today, and was on Ribavirin for a full course through wk48.  I have poly-neuropathy, In my case it affects peripheral nervous system and not the kidneys and other internal organs.  

The peripheral neuropathy was caused by an autoimmune reaction to the HCV virus, not the HCV combo-therapy.  But it was exacerbated after I began tx for HVC.  For me, the neuropathy results from cryoglobulinemic vasculitis which affects some 5% of persons with chronic HCV.  I understand the involvement of the cryoglobulinemic vasculitis is somewhat typical for HCV patients with neuropathy.  The cryoglobulinemic vasculitis results from a 'B' cell immune response to the HCV, producing cryoglobulins, so called because they thicken and adhere to the walls of the medium to small blood vessels when they get into the cooler areas of the body like joints and extremeties (where the blood is cooler than the core body temperature).  This interaction of these immune proteins and blood vessels leads to neurological damage.

It took 2 mo and 5 specialists to get to the bottom of this very painful problem.  I ended up at a hematologist/oncologist who used a lymphoma drug called Rituxan (Rituximab) to reduce the cryoglobulins and the altered 'B' cells which produce them.  It worked well, knocking the cryo's down from a 7 to a 3 cryocrit.  The cryoglobulins reduced further to a trace over another couple of months, likely due to the fact that the interferon/ribaviron response had reduced the viral load to undetectable.  With no substantial HCV to stimulate further cryo production and the altered 'B' cells replaced by normal 'B' cells; the neuropathy has steadily but very slowly improved- it takes months to a year or two to repair nerve tissue.

This is the longest post I ever wrote here, and I apologize.  The overly simplistic responses seem to be 1) interferon tx suppresses the HCV and thus the cryo's, or 2) eliminate people with this auto-immune problem from interferon therapy because of the possibility that it may cause or exacerbate this problem.

I'd rather not have learned all this.  Dave

[audreywald]

I am so discouraged and miserable. Is there anyone reading who is suffering in these weird ways?

Today I went to see my shrink, on the way there my stomach was hurting a LOT, and I was not sure if I was going to make it. The handicapped spot in front of the office was taken. I parked illegally, made it to the bathroom with not a second to spare.

So the day did not begin well.

Got a call from my grandson's school that he was "looking" at girls behinds.(after grabbing behinds last week) I went to get him (my idea) and he told me his crotch hurt because some kids jumped him and kicked him there. I WENT BALLISTIC. You know, how we talk about going from 0 to 10 in no time at all? That is what happened, I remember talking about the police, about going from class to class to find the culprits, about the school having a responsibility to keep kids from getting beat up no matter what they looked at.

They were going to give him an in school suspension, now they want an emergency placement. ( I am trying to get him in a special school but not like this)

I made it so much worse.

I am a stranger to myself, I have no emotional reserve, nothing makes sense and I am miserable.

Maybe I should give up.

[audreywald]

No, this is a Chicago Public School - right now I feel like I am cussing when I say that. My grandson has problems, but we are doing everything we know to get him the right help. He may be bipolar, for sure he has depression. (So would anyone whose mother brought him to his grammas when he was 3 one cold winter night, and he never lived with her after that.)

I have been trying to get him into a therapeutic day school, he is gifted but unable to get along or follow rules or instructions in a regular setting. He gets upset and throws his work away. He tells the teacher to shut up. He does not understand why he has to listen to people he does not like.

He has a psychiatrist, a therapist, I hired a lawyer to act as his advocate, he is on meds (after having to be hospitalized because of threats to harm himself or others.) I had him put on meds reluctantly, but after watching his laughter disappear, after hearing him talk about hopelessness, I realized he needed more than love and understanding.

Me being on these meds is making everything so much harder. I get mad when I need to be calm. I yell when I need to lower my voice. I threaten to call the police when I should be making "nice" to the powers that be.

Chevy, should I stop? I can't take this emotional rollercoaster, I really want to give my self a chance to get well, but I feel so miserable and lost, and crabby and so unlike me. My heart is so heavy I feel at the end of my rope.

[audreywald]

Thank you for your kindness. It feels hopeless right now, but maybe I can hang on for a little longer.

I will try anyway.

[honey1616]

I feel so bad for you!!  I'm up at the top...I guess posting while you were down here LOL  And now that I read your post..I feel ridiculous because you really do have alot to deal with. I guess we all are going through our trials and errors but we can do this!  I know it must be so hard with your grandson living with you and my heart goes out to you. And yes....there will be an end to this because it can't last forever so hopefully..time will fly for us and heal!! Best wishes and hang in there!! We are all going to do this together!

[twotells]

Sorry to hear about your struggle.  It must be difficult dealing with your grandson's problems on top of your own.  Hope things improve, hang in there,  Dave

[jonihs]

Have you had your grandson tested for ADD or ADHD.His symptoms seem to be acting out reserved anger, so he may also  need anger management. I'm very sorry you have all this stress on top of tx. Just keep telling yourself," I made it this far, I can grit my teeth And Keep Going" Also, if you're not on it already, maybe talk to your Dr. about xanax. It could help alot w/ the anger problems. My prayers are w/ constantly!!!!    Joni

[hepcgetlost]

I'm thinking about you too...please don't give up. Everyone here considers you an important part of this family. somehow you have to find a way to get the stress level in your life to less toxic levels...even not on tx, you've got way too much on your plate...I don't know what to add to all the other suggestions...except my support and to tell you that I care very much...we all do...there's a whole lot of love being sent your way and I hope at least that feels better...will be thinking of you this wkend.
judi

[twotells]

Years ago, I worked at an alternative school as a counselor.  There were kids with all kinds of problems- a fair # were gifted.  The kids had one thing in common, they could'nt seem to adjust to regular high school.  We had two incredible teachers who related to each kid as an individual.  Many of the kids responded in nothing short of a miraculous way.  I just wanted to share this to give you hope.  Dave

[berlynn]

Hi...I hope you are feeling better today. I am sorry that you have so much on your plate right now. I hope you can "hang in there" and stay with us. You are very much a part of this family and you have friends here rooting for you. Is there anyone else in your family (husband)that can help by taking over some of these responsibilities for a while? You really need to concentrate on YOU right now. I know how hard that can be with kids and grandkids of my own. But your TX is only temporary and you need to give yourself EVERY chance for success. I know that the world doesn't stop while we go through this...but you really need to try and take time for yourself right now. Chevy had some good suggestions. Maybe, by taking time to do little things for yourself...you will find that you are better able to deal with your grandsons problems. My prayers are with you, kim

[Xenigma]

I'm sorry everything is so very hard for you right now. I do know how hard it to have a child like your grandson.  My son sounds very similar when he was younger in elementary school. We tried my son on medicine and for him it wasn't good.  So I went to the doc and got meds for me. We got through those trying times and you will too.  You have more on your plate right now than usual. Don't look too far ahead because it all get too overwhelming.
I do have to mention that I did switch my sons class and it was good.  A new teacher with less students was just what my son needed. If that is an option for you, try that. My son is 16 now and in High School. It all worked out and it will for you too.
Hugs,
Enigma

[tina b]

I'm sorry to hear about the tuff time you and your grandson are having. You are in Chicago, I am in the southern half of Illinois. Have you considered home school for your grandson? In Illinois, all you need to do is pull him out and tell the school that you will be home schooling him. NO REGULATIONS! ie: no trouble out of the school system. There are companies and individuals that will help you actually teach him at home......including the school itself if they want to, they are not obligated to. The school may be able to give you some inforamtion on it. They will send you books,tests, keep track of his grades and everything you need. I think the one that my nephew uses cost about 80 dollars a month. You don't have to go through a company, but it helps. My brother and his wife are both professionals , he is a cpa and she is an rn, there son is smart and wasn't really having much trouble, but the school system here in this po-dunk county leaves much to be desired...so they just pulled him out. He is 16 and could take a placement test at the local college and begin taking college classes while studying for his high school education. It is just a thought but you might consider it.....at least while on tx. I will keep my fingers crossed for you.

[audreywald]

omg, why does life not let up on us when we are sick? I am so sorry about your daughter. Conspiracy to do what?

I sent "don't quit" to myself in an email the first time you posted it. I knew this but it reminded me. When I started this tx, I knew that if I were a responder I would have to see it through. And I will know soon, but judging from the way my alt is dropping (down to 15) they expect me to be around for awhile. PLUS, my labs are ALL still within normal range, I gather that is pretty good at this point? They told me they are "excellent."

It took me 7 years to do this with real willingness, and for today, I will NOT quit. I can quit tomorrow, or the next day - but NOT today.

Cindee, it will be ok. I would cry all day too, but it will be, you know that, don't you?

[audreywald]

Thank you all so very much. I want you to know it means so much to me to have this kindness and support. I want to address some of your suggestions, those I can remember anyway. (lol)

I am thrilled to have my grandson. I have had him since he was 3, and I feel he is my son. My daughter hints that maybe now he would be better with her, as she has been a mom again for the last five weeks and feels she has a "gift" for mothering. She needs to forget, I think, the reasons she gave him to me to beging with. A part of her needs to believe that I "stole" him, when in reality she threatened to put him in foster care if I did not take him.

I think home school would be not good for him, the reason is that this boy needs to be socialized more than anything else. He is extremely bright, probably gifted, but he does not understand why there are rules in society/school/life or why he has to conform to a degree anyway.

We all have to learn this. One of the reasons I got Hep C, is because of that same attitude. The rules did not apply to me! I NEEDED that heroin, life was so hard for poor Audrey, I had such a bad childhood, bad parents, bad husbands.(lol)

In AA we call this thinking "terminal uniqueness."

I took a tour of a therapeutic school this week, and I can see where he would blossom in a certain setting. Therapy combined with a nurturing academic environment would be perfect, and might very well get him in a place where maybe sometime in high school he could learn the coping skills to function in the gifted setting his IQ qualifies him for.

I will fight with my life for him just as I will fight (kicking and screaming) for myself.

I cannot possible do this tx for a year, but I CAN do it for another day.

Thanks to all of you I can fight another battle.

[audreywald]

I feel better when I can do something for somebody else. One problem is that I am too much in my own head and my own company. There is a saying in NA, "an addict alone is in bad company."

So when I am able to give something of myself to someone else, it reminds me that I am still a part of a bigger world, that I still have worth and something to offer outside of my little narrow world of Hep C and it tx.

Never be afraid to ask for help, folks. You may be helping the "helper" more than he or she is helping you.

What you guys have done for me with your responses, all of you who took the time and trouble to be there for me, is beyond thanks. I borrow from your strength and love when I have little of my own.

[berlynn]

I think that your family and each of us is very lucky to have you!!! Your courage and strength are uplifting. You have obviously been through alot.....but maybe that is where your strength has come from. Your grandson will be fine because YOU are in his life. Thanks for sharing, kim

[DebbieDo]

Stay strong girlfriend.......That is how i feel about tx.......i say i can't do this for a yr, but, im succeeding doing tx for another day.  Your grandson is a blessing......love each day.....
          Deb  :)

[audreywald]

You guys are so great.

[cindee]

Come on now...... go back and PRINT "Don't Quit"...I kept this with me all the time....within reach. You hang in there. You must deal with it, don't let it deal with you!!!!! I got a call last nite from my GOOD daughter was in jail, she rode with a girl friend to a house and dropped her off, then went to put gas in the car and when she pulled back up to pick up her friend...there were police everywhere...they arrested her for conspiracy. I have been in  tears all day. So we must fight to the end...especially the nasty ole' dragon. We are here for you. We love you VERY MUCH! You run to us anytime you need. One day at a time......You Can Do It!!!!! Love and prayers, Cindee

[Fubarcat]

Hi Audrey - We've discussed this before:  My son has learning disabilities and is ADHD.  He is on meds but he also attends a school for learning disabled.  He is 8 years old and cannot read very well.  In Florida, they have a program where if you are not happy with the public schools, you can switch to a private school and apply for a state funded scholarship to help defray the costs of private school.  Of course, you have to jump through all their hoops and say everything they want to hear before they will agree to grant the scholarship.  I switched my son over and he is now in a class with only 10 other students.  He is doing wonderfully well - although he still can't read hardly at all.  He is also gifted - IQ is higher than most adults - but simply has a disability with respect to reading and spelling.  

Anyway, I know how trying it can be when you have a child you have to deal with when you are on these meds.  I can only pray things get easier for you and suggest that you check into private funding or scholarships for a learning disabled school.

[cindee]

Hey girlie, It's 3:25am. We went tonite and got my daughter out of "jail"...I can't believe I'm saying that! They got her for conspiracy to traffic cocaine! She is innocent and I'm not just saying that because she is my dauughter, SHE IS MY BEST FRIEND TOO. We know eveything, every move about each other...but my oldest daughter is who we thought would end up in jail. Anyway I'm sure she will be okay. I told my husband when we were at the justice center, I felt like I was waiting on someone I hadn't seen in a long time...... in the airport!
I hope you are feeling better today. I had to take extra meds for the trip we made today. But I am tired, but not really sleepy.(for a change).

You're right about all the "hard" things seem to hit us while we're on tx. It is very hard to handle somedays. I really wish I had started a journal while I was on tx. Hind sight is twenty-twenty. And let me tell ya girl....my short team memory is horrible. I bet ppl think I'm crazy when they have to re-peat...re-peat....LOL...phone #'s etc. !!!!

But you hang in there. I did and NOW YOU HAVE TOO!!!! Shoot my platlets dropped to 9 for a long time...and before I found out how really fatiqued I was, if I had , had the energy, I would have cleared out 4 ppl. in this crazy doctor's office...they were all in my exam room at the same time and the doctor was talking into a frekin' hand recorder! I paid them and told them I would not be back! He was not that busy to be so cold and uncaring! I even got to my appointment 30 mins early!

Girl I'll talk to you soon, and I hope you are feeling much better. Get that Bible out! Get in the word...I know you do.
Much love and many prayers to YOU, Cindee

[cuteus]

You certainly got a lot of support and suggestions from people that can best relate to your situation.  They were excellent.
  As for making things worse at school; how can you not intervene? It is your baby.
There should be 0 tolerance for violence, even if inflicted upon so called "troubled" kids.  It is within your limits and rights to address the attack on your grandson with the principal and the superintendent's office if need be.  I did this for my daughter and we did not pursue it at the police level, though we could have, since it was addressed to our satisfaction at the superintendent's office.  We had a conference, with a counselor as moderator, between my dtr and the culprits of the unwanted behavior.  They now have a discipline record.  
Your instincts are right, mama cat instincts, (btw who was termed mama cat here? i forgot LOL).
Audrey, you are pulling a lot of hidden strengths day by day, and those baby steps are taking you far.

be well

[Eldorado]

Hi twotells,
the discussion thread is far from the opening question now. but back to the point: how does the polyneuropathy manifest itself in your case? this person I know talks about vasculitis, a paralyzed hand, red spots and burning sensations on the lower leg etc. the doctors are treating her for this and say that this disease can only be stabilised but not cured. she says that the treatment for the HCV has stopped altogether. her hepatologist has told her she was beyond help. but when I here your story, there is treatment possible!

[cuteus]

as you might have noticed there is a limit on questions allowed daily on this forum, so you will see many other concerns posted within the same thread, and it will seem as straying from the thread. always direct your question to the person in question and it works nicely.

[twotells]

Thought I'd check back every now and then to see if you had further questions.

In my case, I have pain, weakness and numbness mostly in legs and feet below the knees- worse on the left side where it also causes an ache (lumbago) in my left lower back and butt.  It occasionally effects my wrist and middle fingers on the left side.  The pain includes what they call 'paresthesia' or abnormal sensation of burning, tingling & numbness.  In the beginning I could barely walk- it felt like someone plugged my foot into the wall socket and then beat the bottom of my foot severely.  I'm doing much better now.  I'm on Neurontin and Oxycodone for pain.  I had two steroid injections into the left sacroilliac joint, also for pain (no systemic steroids because I'm still on interferon).

Only Hematologists use Rituxan- other physicians are barely aware of it.  It is safer for people with cryoglobulinemia than for people with lymphoma, which it's labled for.  If your friend has cryoglobulinemia, he should see a Hematologist, not just a GI/Hepatologist or Neurologist.

Here's some links on Peripheral Neuropathy (mono or poly), cryoglobulinemic vasculitis, and Rituxan (Rituximab).  The last link is regarding a new study on Rituxin for HCV non-responders with cryoglobulinemic vasculitis.

Hope your friend can get some further help,  Dave

[twotells]

I have pain, weakness and numbness (paresthesia) below the knees on both legs and feet, but worse on the left side where it also effects my left lower back (lumbago), and my wrist and middle fingers.  In the beginning, I could barely walk.  It felt like my foot was plugged into an electrical socket and like someone beat me with a club on the bottoms of my feet.  It's better now due to pain meds (Neurontin & Oxycodone) time, and tx for the underlying cryoglobulinemia.  The Rituxan is cutting-edge and used only by Hematologists.  Other docs, including Hepatologists, GI's, and Neurologists are barely aware of it, if at all.

Here's some links:
Hepatitis Central, HCV, Cryo, and Neuropathy
http://www.hepatitis-central.com/hcv/cryo/connection.html

Rituximab in the treatment of rheumatoid arthritis, systemic lupus, and other autoimmune diseases: past, present, and future
http://www.rheumatology.hss.edu/phys/specialReports/rituximab.asp

Rituximab to Treat Hepatitis C-Associated Cryoglobulinemic Vasculitis
http://www.clinicaltrials.gov/ct/show/NCT00029107?order=16

Hope your friend gets further help.  Dave

[sarahsss]

I started ribivarin and pegasys  injections Feb.22. So far I dont notice any thing other then the fact that im up so late tonight, and that i get tiny aches here and there. my doc. said I was probably going to feel the side effects the most in the first 2 days, and then it would get better. I keep waiting for the other shoe to drop. Do people sometimes get the side effects later onn rathor then immediatley? Or is this a good sign?

[lisachubrilo]

my husband is on peginterferon and ribavirin and after his shots for a couple days he complains of his kidneys hurting . he is a pipefitter and drinks water all day long at work and caffine free coke and juice at home but his dr. george koj  says not to worry that this pain cant be from these meds, does anyone out there know any more about this? hes not ever had this pain before, well i guess he did  have stone removed alot of years ago and no problem after that until now.

[ahsanpervaiz]

i am helpless with my Joint Pain after the treatment of pegasys for 8 months.May be its linked with my nervous system...please help needed

First this pain started with sciatica never pain in one leg, then went to both legs. I started going to a physiotherapist but not that usefull. I also consulted a reumatologist, Arthopedic sourgens but their given exercises didn't help me much and their medicines disturbed my stomach a lot.
Now i have symptoms of joint pain in my neck, back, legs, my feet dont move when i wake up in the morning. And this is too much for me.
Other than this sometimes i feel pressure in the middle of my brain and throat...I dont know what is this for, and when i feel this pressure i cant study or read any book. I cant keep myself hungry for long times too.........
hope someone have solution or can guide me to the right direction. should i check my TSH levels or go to some Neurologist....
please email me......
ahsan_vampire***@****

[Jeannie321]

My partner was on the recombinant rebetron/interferon treatment for about 17 months in 2001-2002. All of a sudden, two years ago, he got excruciating head, eye, and body ache, pain, burning, etc. He has now been diagnosed with "neuropathy". It has taken almost 2 years to get this diagnosis. I mean, 7 specialists, tests, 4 emergency room visits, 50 or so doctor visits, 2 hospitalizations, etc. Do you think this could have been a side effect of those drugs. His HCV in at non-detectable levels, and all else is good. Help. the doctors don't seem to have a clue. He is now on Neurontin, along with 19 other pills a day to be about 75% funcitonal. They have all tried different treatments. Help??? Without neurontin, he is in agony from the head to toe with what apparently seems to be nerve pain. The neurologist, rhumatologist, primary care, etc. don't have any explanation, and don't know about Rebetron side effects like these.

[alice808]

I have been diagnosed with genptype 1a, in acute stage, and quite frankly, I am scared to death.  My viral load is over five million.  My doctor has me on peginterferon/ribasphere for the next year.  This is the first week, and I'm already feeling the effects.  I can barely do the things I need to do at home, and I work forty hours a week on top of that.  I have a sixteen year old and a nine year old, both of whom I love dearly, and I need to get through this to see them grow up.  Can someone suggest anything to make this more bearable?  I CAN'T FAIL!

[WriteItDown]

Hi there, Alice, and welcome to the board!

First off, you're posting at the bottom of a thread from several years ago.  But if you make a new post, a lot of people will come along and help you out!

Are you sure you're in the acute phase?  This means you contracted the virus very recently, and if that's the case you have a really excellent chance of clearing. In any case you're to be congratulated: you're doing something to get rid of the virus and that's going to help your kids in the long run.

The treatment is hard, but people come on this board and post looking for help for their symptoms, and there are things you can do to make it easier.  First of all, try not to panic!  Just because you're feeling the drugs now doesn't mean you're going to have bad side effects all the way through.  You might get lucky and have pretty light sides, some people do just fine.  My husband is in week 17 and his side effects aren't that terrible, plus they haven't really gotten much worse from when he started.  The thing to remember is that whatever the case, there are usually things you can do to help yourself out.  Also, the treatment isn't forever.  And if it's not working by week 12, you can stop.  If is is working, then you're getting rid of it!

But do make a new post -- you'll get more replies!

[drummerboy7]

0-10 in an instant is such an understatement.  I took a month off in December of 09 when I began treatment.  I felt so horrible I can't fully describe it.  I still do.  I have breathing issues, pain problems, and major attitude problems.  In fact, prior to treatment I was praised at work by the CEO, CFO, and my direct superiors for being such an asset to the team.  I could do 3 times the work of people in my position and used my tons of experience to be superior.

Until treatment.  I couldn't remember the simplest things when I returned to work.  How to remote to a server?  Our passwords that I had memorized so easily before.  I as frustrated, and sick all the time.  I lost my job last week after going ballistic for something that really wasn't that big of a deal.  I was handed the asset tracking for the entire company, and I simply wasn't of mental capacity to handle it.  I told my boss, but he said I was actually doing a great job.  I didn't feel like I was.

Anyhow, an asset came into question that someone 3 levels up from me had reassigned and I lost it because I had no record because of them.

Now I will lost my insurance and I can't afford the treatment on my own and I have to look for a new job.  So I am quitting therapy today, 2/23/10 - wish me luck.  I am non-detectable after 3 months of therapy, and started with a viral load 6.5 million.  So maybe I have at least bought myself some time.

[Bill1954]

Yikes! You might rethink abandoning treatment at this point. Have you called the manufacturer for patient assistance? Here are the numbers:


Pegassist (Roche Pegasys system): 1-877-734-2797

Commitment to Care (Schering- Plough PEG-Intron system): 1-800-521-7157


How about Cobra from the employer? Maybe you and your doc can work out something for the remainder of the treatment. Good luck to you, whatever you decide—

Bill