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Avatar universal

Tapering off the Interferon and Ribavirin at the EOT?

There seems to be a renewed interest in the Tapering off the Interferon and Ribavirin as some are getting closer to the EOT or are in the planing stages as to what to do. Most are aware that being on these meds for so long that the body had become adapted to the higher than normal levels of the interferon in the body and are concerned about when treatment is stopped what will be the lasting effects if any, after stopping abruptly. Also what will be the effects of the reversal or abrupt stoppage of the Ribavirin.

This has been discussed many times before with a lot of pro's and con's as to it's validity, of this unspoken controversial option. I think it is worth  revisiting the subject again as more people are aware of the personal options to them in how to deal with the aftermath of treatment. "To me understanding this process one needs to understand the process of the meds in the body at the beginning of treatment to see the possible benefits at the end of treatment." This thread should be a good base builder for those looking for the best course of action knowing what they have been through personally while on treatment and a furture base for those looking for such information.



jasper



1. What would be the best way to stop the Interferon?

2. What would be the best way to stop the Ribavirin?

3. Taper both together?

4. taper just the INterferon?



  
86 Responses
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548668 tn?1394187222
I understood that tapering may assist your own t-cells to strengthen and be to fight any HVC that was managing to mutate silently below the UND status of our blood... i.e. that our system would be more equipped to mop up any leftovers much in the way that those who clear the acute infection spontaneously by themselves;   this does not seem to include the many who have already totally eradicated the virus during the course of tx.

However, I do wonder, if extending tx for those more likely to relapse wouldn't be just as good an option. i.e. the newer studies that seem to be able to predict 24 hour RVR after the first shot promotes better prognosis for tx length, and I'm assuming it's a cost factor at many hospitals regarding regular PCR's, and the promise of newer and better drugs has stopped the $ pouring into better prognosis tools for SVR on SOC.

I would have been as happy to extend a couple of weeks.   My WBC count was always higher if I took my bloods on day 7 rather than day 5 or 6 so our immune systems (while not normal) seem to bounce up quickly (unless auto-immune probs and I know of one person who continued having neutopenia sometime after tx).

Proactive - thanks for the info;  I now know why I relapsed on the 3 weekly intronA of 1994, guess my VL was probably coming back with a vengence weekly, despite my ALT's looking good.

I also think that despite the IFN leaving our systems within 2 weeks, the effect of the IFN to our bodies lasts much longer i.e. our immune system may take months (if ever) to come right back to pre-tx baseline; and many have adopted problems along the way, which can also affect our body's ability to fight any mutants.

Trish - I did wonder whether your thyroid may have played any part in your post tx depression - (that's why mine is being monitored as thyroid has so much to do with mood amonth other things).  I'm so sorry you had a rough time - similar to how I was on about week 7 tx'g and very frighening but interesting that we both concentrated on photos of those we loved and felt responsible for to get the strength.  I remember your blood work being all over the place, and know you had so much to be anxious about - I would have been in breakdown state considering what you had to mentally ingest (and for the appendix to happen as well OMG!!!)... so glad you're starting to feel better AD's or not, just as long as something good is happening for you :-).

I am 3 weeks post;  I had a shocking bout of hayfever at the end of the first week (which felt like a bad cold), and took all my strength of good food, water,  vitamins and a 'lock myself in the bathroom for an hour' with a saline rinse bottle and a few days rest to get through it.  It did cross my mind that my immune system was starting to work on its own and perhaps having a bit of trouble.  I was aware that I was vulnerable, not only to bacteria, but now to viral assaults (of the more usual kind) also and had I not been RVR would have been sure that there may have been a good window for opportunity for relapse.  (as it is fibrosis ensures that I'm still a good candidate and will let you know next week whether my ALT's are looking better or worse)...   I made myself continue with the same liver-friendly diet, vitamins etc, and started a couple more supplements.

Personally, happy to either stop the meds abruptly or extend, unless there is a good study (with the peg IFN), and I would have thought that if tapering were an option, it would continue for many weeks at a very slow rate.. once again, $ required for SOC studies that are not taking precedence in the chemical race for faster SVR rates.
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Avatar universal
The last few post about polyethylene glycol is not to scare anyone who reads about it but it is just the facts of the meds we take or have taken and the information is an individualized interpretation of it.

jasper
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338734 tn?1377160168
I was afraid that "Cost" was the answer to my question. If that is so, then why would a doctor would object to tapering since he doesn't have to pay for it? That would be the patient or insurance company. Yet I haven't heard a doctor advise this route. I have not asked mine, but I will on the 21st.

Pardon my ignorance as I am no chemist, but couldn't polyethylene glycol and monoehtylene glycol or propylene glycol be quite different in affects to the human body? There is is big difference between O and O2, though both are just Oxygen. Most of your reference points to propylene-glycol not PEG. Not taking issue, just inquiring. EG is seriously toxic. Are they all that similar (PG, EG, PEG)?
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Avatar universal
Cost! 21 shots a week verses 1 shot of pegylated interferon but at whose expense. True got to take the good with the bad for the cure but is the side effects caused by the interferon itself or the additive polyethylene glycol? What happens to left over build up in our systems after it has delivered the goods? Any studies on polyethylene glycol? and the effects on the body long term, Probably not.

jasper
Helpful - 0
Avatar universal
But speaking of anti-freeze as you say.

What is Propylene Glycol?

Propylene Glycol (PG, Polyethylene Glycol (PEG), and Ethylene Glycol (EG) are all petroleum derivatives that act as solvents, surfactants, and wetting agents.  They can easily penetrate the skin, and can weaken protein and cellular structure.  In fact, PG penetrates the skin so quickly that the EPA warns factory workers to avoid skin contact, to prevent brain, liver, and kidney abnormalities.  PG is present in many stick deodorants, often in heavier concentration than in most industrial applications. (Nyack, Dr. Vin, Ph.D., Biochemist; personal communication).  And Propylene Glycol is what is used to carry the “active” ingredients in those transdermal patches INTO YOUR BODY
Imagine a bottle of Anti-Freeze in a picture with shampoos, deodorants, cosmetics, lotions and toothpastes?
The question you should be asking is …. What’s Anti-Freeze doing IN my shampoos, deodorants, cosmetics, lotions and toothpaste?
Yes, the main ingredient in anti-freeze is in all of these products.  
Shocked?  You should be!
You need to understand what it could do to your health…
PROPYLENE GLYCOL
is a colorless, viscous, hygroscopic liquid CH3CHOHCH2OH, used in anti-freeze solutions, in hydraulic fluids, and as a solvent.  Also called “Propanediol"
American Heritage Encyclopedia Dictionary
PROPYLENE GLYCOL is used in:
Anti-Freeze  * Brake and Hydraulic Fluid  * De-Icer  * Paints and Coatings  *  Floor Wax  * Laundry Detergents  * Pet Food  * Tobacco *  Cosmetics  * Toothpastes  * Shampoos  * Deodorants  * Lotions     * Processed Foods and many more personal care items.
Check out your body lotions, deodorant, hair conditioner, hair gel, creams, and many more products!
Propylene Glycol serves as a Humectant – a substance that helps retain moisture content, or simply –it prevents things from drying out.  That’s why some pet foods are soft and chewy.  This, of course, is a good reason it’s in cosmetics and other personal care items.  It makes the skin feel moist and soft.  And, the products don’t dry out. Propylene Glycol is also found in baby wipes and even some processed foods!  Go Ahead, check your labels!
A published clinical review showed propylene glycol causes a significant number of reactions and was a primary irritant to the skin even in low levels of concentrations.
The American Academy of Dermatologists, Inc; Jan. 1991

What can PROPYLENE GLYCOL Do To Us?
In 1938, the FDA grandfathered the use of several ingredients as safe for personal care items, with restrictions of course.  Based on what?  There were no studies on repeated exposure over time.
The problem is PROPYLENE GLYCOL may be absorbed through the skin.  Studies have shown SYSTEMIC retention (residue throughout).

NOW THIS OPENS UP A WHOLE NEW BALL GAME!
Has anyone or any company tested the long-range side effects from constant use of these products?  We haven’t found any.  Do these complex chemicals build up in our bodies?  If Propylene Glycol keeps things from drying out – how?  If it’s absorbed into our bloodstream and into our cells, what does it do?  Does it affect any of the simple, natural biological functions at the cellular level?  You don’t need a study to say – it’s possible, even likely.
You do need a conclusive study to make the producers stop using these ingredients!  Yes, this is beginning to sound like another great American Tobacco Scandal.  But before you get complacent and think the government is going to step in – think again.   Look how long it has taken the cigarette pushers to get grilled – 20 years after the first Surgeon General’s report….
The MSDS (Material Safety Data Sheet) for Propylene Glycol says:  “May be harmful by ingestion or skin absorption.  May cause eye irritation, skin irritation.  Chronic exposure can cause gastro-intestinal disturbances, nausea, headache and vomiting, central nervous system depression. (“Toxicological profile for ethylene glycol and propylene glycol (update).” Agency for Toxic Substances and Disease Registry (ATSDR), 1996.  Atlanta, Ga; U.S. Department of Health and Human Services, Public Health Service.)
Propylene glycol is also used as a solvent in acrylics, stains, inks and dyes, and in cellophane and brake fluid.  It is used as a preservative in flavored coffees.  PG can have an anesthetic effect.  Other side effects on animals exposed to PG include heart arrhythmia, stunted growth, decreased blood pressure, and even death.  
In the book "Beauty to Die For" the cosmetic consequence by Judi Vance gives the following information:
"Propylene glycol is one of the most common humectants.  It is used in many cosmetics including liquid foundation makeup, spray deodorants, baby lotions, emollients or moisturizers, lipsticks and suntan lotions.  It is less expensive than glycerin and has a better permeation rate. It has also been linked to sensitivity reactions -- local irritations, allergic reactions.  This would not be news to the manufacturers of propylene glycol.  If you were to purchase a drum of this chemical from a manufacturer he is required to furnish you with a material safety data sheet (MSDS) and it may alarm you to find that this common, widely used humectant has a cautionary warning in its MSDS that reads, "If on skin: thoroughly wash with soap and water!" What? Aren't we putting this stuff on our skins daily, sometimes in copious amounts over long periods of time?
It's no wonder propylene glycol has been linked to many severe health problems including contact dermatitis (irritation), auto toxicity, kidney damage and liver abnormalities.  It has been shown to be toxic to human cells in cultures. (Bulletin of Environmental Contamination and Toxicology, Jan. 1987) In fact, in tests conducted over the years propylene glycol has been shown to inhibit skin cells growth in human tests and cell respiration in animal tests. (J. Pharm. Belg. Nov/Dec 1989).  It was found to cause skeletal muscular damage in rats and rabbits (Pharm Res Sept. 1989).  It is reported to directly alter cell membranes (Human Reproduction, Feb 1990) to cause thickening of the skin (contact dermatitis, 1987) skin dehydration and chronic surface damage to skin ( Derm. Beruf Umwelt July/Aug, 1988)  It was also shown to increase beta activity (changes found in anxiety states) when inhaled.  (The Medical Post Sept 27, 1994.)
Propylene glycol is a known irritant and sensitizer causing dryness, erythema (abnormal redness) and even blistering. (Safety Evaluation of a Barrier Cream, Contact Dermatitis, 17:10-12, 1987)
Despite its record, propylene glycol continues to appear in our everyday products.  It was originally developed for use in industry as an anti-freeze, brake fluid, airplane de-icer among other applications and it's doing a good job there.
In fairness, the producers of these products are not doing anything illegal.  They use Propylene Glycol and other questionable substances, for three reasons ….
1.They do the JOB
2.They’re CHEAP - (In most cases the cap on the bottle costs more that the ingredients inside)
3.They’re ALLOWED!
Helpful - 0
Avatar universal
Geter: The “elaboration” was reflective of the option you had to taper but did not follow through with because of your own decision not to
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I also decided against taking anti-freeze post treatment or dancing the Rumba naked in the snow. And for basically the same reasons. There was nothing out there regarding tapering other than a few posts by members who tried it on their own based on nothing except their own whim. "HR" btw hadn't even arrived here during my treatment so it wasn't as if I read his opinion and discarded it.

Geter: little is really known to me about you other than your opinions and critiqued research reports which is all good. : )
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You know all you need to know in terms of my HCV stats, etc. Other than that, I suppose if we were potentially dating I'd fill you in on the rest, but I don't date men and I think you're married :)

As to "additives", etc. -- additivies shamatitives, it really doesn't matter. It's really quite simple. If something follows treatment (as in side effects) then how much does it really matter what exactly caused it. It's caused, and it sounds like you had some serious stuff going on. And from what we know and studies -- the culprit appears to be intereferon as it so vigorously ramps up the immune system. Again, no free lunch, a ramped up immune system has both a down as well as an upside.

Geter: The cholesterol and Triglycerides was also accelerated during treatment due to the high intakes of fats and sugars which after a year of a high intake will take a couple of years to ring out.
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Doubtful -- let's say VERY doubtful -- your cholesterol and tri's are still accelerated from any fats and sugars you took during treatment. Both are very diet sensitive and can be brought down quickly with diet to a certain extent. Now if your baseline has been raised that's another story but again, it's the interferon which is known to accelerate the metabolic syndrome longer term. The fats and sugars you may have ingested during tx were more shorter term. Don't know your numbers or your cardiac risk profile but if agressive diet isn't working (or isn't feasible) consider statins.
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