I,m in week 9 of pegintron and rebetol, I have had blood in my urine @ 3 weeks was on 2 seperate antibiotics for 2 weeks and that cleared up. Now in week 9 I have an infection in my mouth, along with re-occuring canker sores. so now I'm again on antibiotics this is the third time. I have the basic sides fever, anmeia, and weight loss, but these infections are a bit#$. I have two friends that gone through the treatment and a year later they have tested positive again, Im starting to think this is just a phamacidical scam! People test negative then 6-12 months later there positive. My goal if anything is just to slow it down since i'm Genotype 1a, but i'm tired of misleading information, my DR doesn't want to do a viral load at three months because the insurance may stop treatment if Im not responding, Im approved for 6 months but why stay on if I'm not responding at 3, so the drug company makes $12,000 more for nothing?

hi. i had a problem with infection in my mouth that wasn't taken very seriously until i called a nurse at the "be in charge program" my blood counts were very low and the nurses on the phone told me not to worry about what anyone thought but to go wherever i had to to get help. <snip>

the hospitals and doctors are there for you to not have to suffer!! THEY CHOSE THEIR JOBS, LET THEM DO IT!



[This message has been edited by Wes1212 (edited 05-04-2003).]

Hi,

Those sores are painful. When my Mom was on chemo she had those everywhere but her mouth was the worst. Unfortunately when treatment attacks...it ATTACKS EVERYTHING even the "good" germs we need in order to keep our mouth "clean" when those "good germs" are attacked it leads the way for mouth sores.

Sounds like you're under a doctor's care so they've obviously done SOME blood work. Perhaps they didn't take into consideration the red AND white blood cell count. Have that checked also as there are drugs you can take for it. There is also some topical things you can put on it while eating.

Sorry to hear about your 2 friends. I'm hearing half and half...some people are reoccuring and some people have been completely free for years. You just do what right is for you. I would never try to talk someone into doing treatment, not doing treatment, quitting treatment or continuing treatment. For my husband, he decided he would try it the 6 months (Geno2), give it his ALL and then if it goes away--great, if it doesn't-----well, at least he tried.
Take Care,
DD

very well put Wes1212 !
keep the faith, bless you.................mj

Thanks for the info. when I started treatment I thought I would get lucky with minor side because I worked out 3 times a week and jogged and Im only 31 also. But it has been a bad experience with complications, as for the work out thing, I tried a few times and kept getting to dizzy and felt faint, (AND COULD ONLY JOG 2 MINUTES) but thats a side I have if I get up to fast. The nurse said just hold on to something. I hate treatment I'm jeaoulus of you people that have less sides effecs. I hope I last but dont think I would go no more than 6 months. because of 1a type If positive at 6 months my chances of it working on 48 weeks are slim to none! I dont know why people with 1a would stay on if still positive at 6 months? Why are some people on longer than others people say I guess geno type.

Howdy-
For the non-respounders, their thoughts maybe a scam, for the responders, and I know of many, a god send, many virus free over three years some four now,and are considered "cured".

Kemo theropy is also NOT a cure for cancer, but is a treatment and has "cured" many, if they were to/or had waited for a better user freindly treatment, nothing but their memory would be with us.

Like the "cure for cancer, you can wait for the cure, that with all the years and billions of dollars, and is always maybe just around the corner,or endure the not so user freindly treatrments, and have up to a sixty one percent chance of responding to the new improved treatments.

I suspect your freinds endured the older straight interferon treatments that were much harsher and not as effective as say the newer improved Pegasys or Pegetron treatments.

I just spent three hecktic, sixteen hour days at a sports show, this weekend and today at Shot #14, with the Pegasys Ribavirin [Strongest dose, 180 Pegasys, 1200 Ribavirin]
and I still would challange anyone to 12 mile hike up and down a mountain, I feel great,charged.


Many go into these treatments around the gold fifty year old mark,[myself 47 yrs] but are in horrendis shape, and could not even walk around the block, but expect to tolerate the treatment, I know of people actually smoking all though treatment, these people should not complain about breathing problems from treatment, and/or end results.

There are many factors that determine end results and sides during treatment, and everyone reacts a little different because of past history, dealing with physical, mental health and even Race, sure its a money making adventure for the manufactures of these treatments, you think if their is a cure for cancer or Aids it will be free?

Many that test negitive after treatment,and yes again test positive at a later date, do so for two reasons, one is that in some all the virus was not eliminated, the other, is many still are subjected to high risk lifstyles,even drinking alcohol, the latter, probebly more the case then most admmit.

HCVSD, your right, the protocol, of present treatments is a PCR test at three months, if you are not responding, treatment is ceased,- not only a money thing, but a health issue, as you say why carry on with your sides if you are not a responder, I would request a PCR, if your Doc will not do it, find one that will.


Just my thoghts and imput.
Be Positive, be well,+




------------------
--Get Outdoors-Enjoy Life----Neil

Dear HCVSD:

Three months ago I finished a 13-month course of PegIntron/Rebetol. This was the third time I've gone through treatment: first, a year on the old Intron-A, then six months on Intron-A & Rebetol, and then this new stuff. My doctor did a PCR at about 1 month post-treatment and it showed no trace of the virus. Although I am definitely happy, I am not about to get all excited until I've gone a year or so with no trace of it. The treatment is pretty grueling & expensive of course, and undoubtedly it causes all kinds of adverse effects -- However, all things considered, I am really glad I managed to get through it.

Get a doctor to run the PCR test on you to see if the stuff is even helping. If it's not doing anything, don't waste any more of your time, health or money on it. If it is helping or has knocked out the virus, keep on keeping on and do the best you can to cope with the myriad of side effects. Sometimes you can deal with a lot more than you think you can simply by knowing that it will come to an end and hanging on.

This may be small consolation to you now -- but things do improve a little every month. Unless you're badly anemic or your white count drops to zip, try to continue. It is easy for me to say this now that I am done with the stuff, but I do remember the bad days and weeks, so I totally sympathize. And I also know that if I have to do this again, I will do it with as little complaining as I can (Ha!) - knowing that all the while I am on the miserable medication, my liver is getting a rest and not being eaten away by the virus.

Please let me know what happens with your treatment and how you're getting along. Be as positive as you can and know that if other people have gotten through this, you can too.

Neeku

Hi hcvsd, I hate your having such a rough time. Some do some don't. You just never know.

Have you tried walking instead of jogging? This would be a lot easier on your body and still give you the benefits of exercise.

Hang in there, eat right and load up on the greens. Spiralina shakes are great for the fatigue!

Take care and let us know how you do!
Jeannie

Hi there, I read on another board about yogurt helping with sores in the mouth, so I started eating the yogurt, the one with active cultures, every day and so far no sores in the mouth. I can't honestly say if it is because of the yogurt or if I just have been blessed with no sores. Keep the faith everyone

Thanks Again everyone,, I think the most frustating thing is I feel ok mentally but physicaly my body isn't doing to well so i get mad at my self for being physicaly sick. It's very frustrating every time i think it's going to get better something else happens now i have a rash or someting by my anal, yes nothing but the truth from me . maybe it's a hemroid but it just hurts all of a sudden.

I read this...and some of the other boards about the side effects and think that the sides are under-discussed and under-reported and downplayed, especially by most doctors.

And I just don't hear enough about the long term side effects......Very disturbing for me.

Hi hcvsd--

So sorry to hear how "uncomfortable" you've been. (that's a doctor's word--like "discomfort"--Have you been experiencing some discomfort? No, doc, it hurts like hell!!)

For what it's worth, wes is right. You do not have to wait until your sixth month to see if you want to continue this. You should show a two-log reduction in viral count within days of beginning, and the virus should be undetectable at the 12th week, or you cannot expect complete response. This is not meant to discourage you by any means--just the opposite : you only have two or three weeks to go until your 12th week is done, yes?

If the 12 week pcr is undetectable, you know your suffering is at least (probably) for a reason. If not, you may consider this strong reason to quit unless extensive fibrosis or other compelling reasons exist to continue. There are many docs who will not continue interferon past the 12th week unless they see this response.

This is my s ummary of my own reasdins, of course. It is no substitute for consultation with your docs, your own judgement and preferences, and so on. But, since your symptoms are so unpleasant, an earlier decision point might just what you need.

Does this help at all?


sean