PeginteronA with Riboflavin long term side effects.

[rebel5454]

I was treated for 9 months with PEGINTERON A with Riboflavin(sp) had a horrible time.  During treatment, I had all the flu like horrible body aches and depression to the extent that I lived in my bed.  I finsished my treatment 3 years ago.  Since then, my eyesight has decreased from 20/20 to blur and squint.  Anyone know if Lasik will work now?  I am losing my teeth they are deteriorating at the gum and sides and all I can eat is soft food or snap goes a piece of tooth.  My dentist claims it was the PEG....My Gastoentrologist said, the ingredient in PEG that makes it work better than plain Interferon is ANTIFREEZE!
ANYONE, have any of these same problems?
So far, I have been clean of HEP C since the PEG treatment for over 2 years now.  My Gastro doc says, after 5 years I am in the clear.  Is that a true statement or do they really know?
Thankyou,
Rebecca

[sjlo]

I was on the treatment for six months. The father of my children died from complications due to Hep C, alcoholism, finally end stage cirrhosis. He had refused to even think about going to the doctor. When we finally got him to go, it was much too late. We were told that he must have been drinking for 25 years or more. He only drank for 5 years at the maximum. He had mostly been a non drinker prior to those 5 years however he used every drug known to man before this issue arose.
My point? I found out as he lay dying that I had this awful disease so it was alot to deal with. Now? I'm 'cured' and just ecstatic to be here!!!!! After watching the toll Hep C can take on a person, I know I
would happily drink antifreeze out of the bottle to get what I have now!! I'm so grateful to be with my family and appreciate every day.

Are things perfect? No, it's been 2 months; I still feel body aches; still have the headaches; have noticed that my teeth are weaker and that my hair is still thinning. I'm told that the hair thinning will go away but not so far.

I say God Bless to all of you going through or having gone through this treatment. Despite the discomforts, it's really been worth it!!!

[DoubleDose]

Indeed, as some have stated above, HCV itself CAN cause many of the problems you describe.  BUT, the treatment often greatly exacerbates these problems, or in some cases, causes and creates problems on its own.  Autoimmune issues, changes in metabolic function, fatigue, and a host of other problems can and have been caused by interferon in many who have tx'ed.  From a personal standpoint, I had a tremendous increase in gum recession and tooth erosion as well as jawbone resorption and tooth deterioration ALL within two to three years after ending a long tx.  My endodontist, dentist, and periodontist were all amazed at the degree of deterioration AFTER my tx.  I had been going very regularly to all three for the past ten years, and they documented the changes.  Another business associate who I have gotten to know in the past six years finished tx four years ago, and had the identical experience with his teeth.  He has had root canals, gum restoration, and three implants since ending his tx.  So, in short, yes the tx can cause many problems.  Just because the literature does not warn of every after-effect, or just because much of this is not commonly publicized, does not mean that these problems do not commonly happen.  Many on this forum have experienced a range of debilitating after-effects as a result of interferon therapy.  Its just a risk factor that must be accepted if one wants to get rid of the virus.  For me it was worth it, I think...as long as these problems don't keep getting worse.

I do not believe that the Pegylating agent, the 'antifreezr' that you refer to, has any real impact on these issues.  Its the impact of the interferon changing your immune response, and over-regulating or super-charging  all of your cellular responses to attack the virus.  This change in bodily function, or over-regulation, is often damaging to things other than just the virus...like teeth, bones, connective tissue, the brain etc.  Often the changes in HOW your system functions linger for a long time (for years in some of us), and you continue to feel the impact of immune system over-drive and its good and bad effects.  One leading doctor told me that one's genes and cells are altered sometimes for a LONG time by interferon.  The body drastically changes in function and actual structure in many ways.

As far as whether it was the HCV or the TX that caused your problems, I always think that one should use common sense, and their instincts and their brain, to assess what their issues were before tx, and then after tx, to come to a general understanding of what provoked the problems.  Sometimes its a little of both.  Sometimes its mostly the interferon.  It really makes little difference though , since what's done is done, and we do not yet have any way of reversing the effects of either the HCV or Interferon...other than hoping for some liver damage regression over the years, for the SVR's.  

Good luck to you and keep working at minimizing your symptoms after your fortunate SVR!  Yes, after 5 years you will be pretty solid for long term SVR, but better yet, two years is probably 99% or better, as far as probability of permanent SVR. Enjoy your SVR!

DoubleDose

[captainron]

Hey guys, Susan you must have a great grandfather good for him, anyway I took pegi and rib for a year between 04 and 05 and it worked. I hand no side effects for the whole year and was able to have a normal life. I have never had any luck but with genome type 1 I figured I would go no where, But after a year it was gone and  in 08 I retested in Evergeen Colorado in June and it is still gone. For once in my live I got lucky. What ever is the the peg or rib it works.One thing after these years is that I have tremors and my teeth are bad too. Does anyone else have tremors for a side effect after years. Well I got lucky I hope everyone does too.                         john

[susan400]

Interesting that you should say that because my grandfather is turning 100 in a few weeks so you never know?....

Susan

[cuteus]

return: is this one of those 'will I be able to play piano' questions? even though you never did before? Why would anyone want to stop flipping the finger? I can see that if you lived in Vermont but not any big cities, it is a must to survive, except in L.A.

susan; when you celebrate your 100 birthday, we will know it was the preservatives.

can do; whatever works without killing you, especially if it is soy based.

[susan400]

Well I guess I should be dead by now from antifreeze because I've treated with Peg-Intron twice and Pegasys once. Also, I take another medication called Miralax that is practically all Polyethalylene Glycol.  I've been on the Miralax for years.

Susan

[can-do-man]

Except for the finger and wife thing i agree with all the rest you said. Take care and good luck

[returntosender]

Peg is not toxic at all.  Are your gastro and dentist trying to SCARE THE SH!T OUT OF YOU? LOL  As for the eyes and teeth, yup they take a beating but should staighten out after three years. If not, maybe you can find an eye doctor who will blame it on peg as well. Seriously though, these are not top 10 side effects of the treatment - although I think that we have way more bacteria hanging around our mouths and digestive systems than prior to tx.  I have also had a few eye infections.  

I HOPE these are resolved within 3 years after I clear.  I am hoping that by three years after successful treatment I will be able to: dunk a basketball, do a back flip, tear plastic wrap off of bottled water, shake my head around real fast without getting dissy, dance like a crazy person and do a split, sing without people asking me to shut up, drive to work without giving someone the finger, listen to my wife for more than a second, eat something other than peanut butter and cookies - etc etc.

[can-do-man]

Hi cuteus, i have some antifreeze, and a garage you don't suppose??????? Na better not, i tried that clorox and brake fluid thing and it didn't work.

As for eyes and your teethers i agree with you, unless we knew for certain before tx. Plus as people age then add the hep-c for years then the meds. Since i refuse to get any older or wiser maybe they can use me for a study.

[Mister beagle bailey]

I don't know if this is your first time on the forum, but welcome.  I would think like your Gastro that you are SVR after 5 years.  The fact that there is ANTIFREEZE in the Pegintron is news to me but if your Gastro said it's in the Peg I would think he would know.
Jim, Goof, Can Do/ALL--Has any one heard of this.  I have never seen it mentioned here before and think it's something to find out about.
If true it would account for all the sxs post tx.

Any answers guys?

Rebel-- What geno type are you? What is your age?  Your eyes and dental problems could age related.

Please post and give us some info on your background.

BEAGLE

[52TELE]

Yes , in a manner of speaking , Poly-glycol (PEG) is used in Anti freeze and a thousand other things. It's just a combination chenical that increases the effective life of other chemicals.
ie... It makes the interferon stay in our blood longer.Before peg , people had to take three shots a week. In anti-freeze and similar products , it keeps it from breaking down as fast and increases life.

I think.

[cuteus]

yes, the pegylation is the type used in some antifreeze, but almost all the vaccines we give our pets also contain it and we do it because Rabies would be worse for them.  

HEp c itself can be associated with all the things you mentioned. My teeth started deteriorating way before my tx, fracturing frequently. The only way to know whether the tx trigger it in you would be if you had a baseline xray of the gums before tx, and an eye exam that said things were perfect. Any deterioration prior to tx, can be made much worse by tx and very possibly the anemia that comes from the meds.  I don't have any effects from the tx in my vision, the Rx is the same as before tx, light sensitivity seems a tad worse, though. I don't see why Lasik would not work, but you need to get that from the ophthalmologist.
It sounds like you are cured from hepatitis after all those yrs in the clear.
good luck