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Posted 5/12/2008 12:31 PM (GMT 0)

first time signing in and a little unsure of procedure but here goes-

I'm a 50 year old male with grade 1-2 and stage 1-2 with an original viral load of 10,000,000 back before i started the peg-intron/ribavirin treatment which was 12 weeks ago. The side effects started to cripple me within 2 weeks and has progressed to the point of having chronic anemia, naseua muscle aches and pains, confusion, blurred vision and mental unstability with mood swings and bursts of rage- (these are not all of them either)

but i was willing to fight my way through this because at my last visit the Dr told me that the count had in fact gone down (week 7) to 750,000 which was a big improvement and that if i could just hang on for another 5 weeks they would be able to tell me if the treatment would actually work and kill the HCV. THEN, I mentioned to him that my vision was getting worse and worse and he immiadiatly got a very puzzled look on his face and got out of his chair to get the cordless phone, he called an optomatrist and insisted that i be seen that day for a series of tests to determine what was happening. Between that eye Dr and then a retina specialist i was told i had several white spots throughout my retina that was a direct link to taking the peg-int and that i should strongly consider stopping that treatment right away as it had a 5% chance of making me blind (5 people out of 100 is affected) I stopped the treatments and have been told by the Dr that there was no other treatment available and that i just needed to wait for advancements in medicine and come back in 6 months for a follow up-

I'm now into week 12 of the worse time in my life taking this poison and i'm continuing to have symtoms even though it's been 2 weeks since my last injection, ugh!  so i've poked around some HCV sites that explan in some cases it takes up to "YEARS" for this chemical to get out of your body and that the symtoms will continue until it's gone if it actually does. 

Does this sound familier to anyone? if it does have you found some alternative medicine other than this chemotherapy-interferon because i'm stuck in limbo here and could use some advice if anyone had some...

thank-you for your time,

i apoligize in advance for the spelling-can't find how to run spellcheck....

later

micprk

  

Posted 5/12/2008 3:27 PM (GMT 0)
Dear Micprk,

Yes, teatment is hell, I'm sorry these side effects weren't properly explained and dealt with before you began treatment.
You should expect your side effects to last about as long as the time you were on treatment, so after 12 weeks you should begin to feel better. Drink plenty of fluids, eat a healthy diet (no red meat) and excercise will help clear your system too. There is nothing promising on the horizon to clear the virus, only Peg Intron or Infergen now.

If you consider treatment again ensure you work with a Hepatologist. Don't even consider it if you can't finish the 48 weeks. There are drugs for anemia, depression, pain and your eye problems (and extreme sensitivity to sound as well) thes are all normal documented treatment side effects & to be expected. You should have been put on an anti-depressant months before you began treatment.

Sorry this is not more encouraging but you will get better when the drugs are out of your system. Its very rare for side effects to last longer than the amount of time you were on treatment. The normal course (48 weeks) took me a full year to recover. from. My viral load was 60M when I started, I cleared the virus at 12 weeks and it was back immediately after I completed treatment. If your quality of life is decent now I'd suggest trying to manage your Hep C rather than consider another round of treatment.

Best, Cary
Posted 5/12/2008 11:41 PM (GMT 0)

The more I hear, the less inclined I am to do this "combo" treatment.   sad

Cary, your hep C came back after it was supposedly cleared?

Hugs,

Connie

Posted 5/13/2008 4:55 PM (GMT 0)

Yes, my Hep C came right back after treatment- very common as I'm a 1a. My PCR was undetectable during treatment & was right back up there at 1st post treatment test (2 weeks). They wanted me to wait 6 months for the test but I insisted. I've found they (drug companies - where Drs. get their stats) tend to leave this important info out when encouraging folks to do treatment. The real question we need to to ask is: What are my odds of being PCR undectable (HepC free) after 1 year post treatment? Drug companies like to use shorter term results because the "relapse rate is so high".

Cary

Posted 5/22/2008 9:27 AM (GMT 0)
OH MY CHRISTMAS !!!!!!! This is what happened to me, Now I am more sicker than ever,
I thought it was only me that this happened to, But I guess we are all in that little boat
searching for the paddle,

And if I move this screen any closer it will be touching my nose, My vision has gotten worse and here I just thought I need stronger glasses, I also have the mood swings and burst of rage, and then I break down and cry, I have the aches and pains all the time, my long bones hurt not just in the joints
I get a bloody nose almost everyday, I can just be sitting there watching TV and all of a sudden I have blood running down, the drs have said that my platelets are very low.
Has anyone else had this bloody nose thing going on??
Posted 5/22/2008 2:33 PM (GMT 0)
Yes, low platelets, anemia, joint pain & severe mood swings & depression are all extremely common side effects of treatment and can all be treated (unforunately with more drugs), Your vision will improve after the peg-intron is fully out of your system (I had the exact same problem). Low platelets will also come up in time. My opionion is to use diet and exercise to help cleanse and strengthen your body (the closer to complete vegetarian you can be the better). You will improve in time - how long were you on treatment? I'd also suggest getting on an anti-depressant right away so you can at least manage your moods and stress (the vuris LOVES stress) . Also if you are not getting enough rest - ask for a mild sleeping pill. I am hopeless if not rested.

Best,
Cary
Posted 8/25/2008 5:50 AM (GMT 0)

Hey There scared_in_oregon I was noticing you mentioned the bloody nose thing ...at about 2mos into my treatment I started blowing puss and hunks of dried blood out of my nose and this in turn caused bleeds...its a sinus infection which is another side effect on this grocery list of side effects for peg intron... an antibiotic called Azithromycin or Zithromax worked for me and so far no relapse... cheers smilewinkgrin

Posted 8/25/2008 8:03 AM (GMT 0)

tman, you picked up an old post, but I'd like to ask how long have you been free of hep C now?  How long were you on treatment and how long did you have side effects?  I'm considering treatment now, but am inclined not to do it.

Thanks!

Connie

Posted 9/8/2008 7:18 AM (GMT 0)

Hi Connie:

I haven't been around in awhile but to answer your questions I'm in early treatment. I can however, say one thing, unless you have clear cut, medically defined reasons: like stage 2 fibrosis - you don't require treatment. On the flip side of that if you have been told you need treatment and opted out, although some people choose to live with the virus, you have cirrhosis at about 20 years and liver cancer at about 28 years, to look forward to. If you don't take care of yourself in the interim there are a whole other slew of health problems to contend with. In a word though treatment can be a mother****er. Excuse the explitive.

Posted 9/8/2008 1:50 PM (GMT 0)
Not neccesarily true. I would recommend "considering" treatment with stage 3 bridging fibrosis & you can manage this virus successfully and die before you get cirhosis or cancer with a good diet & lifestyle. I do agree treatment is a MFer. I did it twice and am now healthier than I've been in years. Still have the virus but am managing it successfully.

Cary
Posted 9/8/2008 10:27 PM (GMT 0)
I do agree that with some people treatment can be really hard. It was very hard for my husband. He had endless sinus infections which caused a hole in his sinus cavity, thyroid problems, mental instability that lasted for months after he stopped treatment. This is only to list a few. But we don't regret him doing the treatment. It actually put the hep C in remission for 6 months. Even after all that he went through with the treatment he would do it again if he could. The alternative is much worse. I wouldn't let the possible side affects stop a person from trying the treatment. Some people actually handle the treatments very well. Each person is affected differently. As is the same with cirrhosis, with the only cure for it being a transplant. Stop hep C and you stop cirrhosis or liver cancer. If you have a chance take it.
Posted 9/8/2008 11:40 PM (GMT 0)

Tman, since you are new and haven't been here in awhile, you don't know that I have already had liver cancer due to hep C, as well as cirrhosis.  I underwent chemoembolization and a study med, TheraSphere, at Mayo for the cancer.  Those treatments were only one time each and not too terrible.  They enabled me to become operable.  I had the right lobe of my liver removed in May '07.  They keep a close check on me--in fact, I was at Mayo all day today, having blood work and a CT scan with two types of contrast.  I will be seeing my hepatologist for the results tomorrow, and to discuss treatment.

I initially tried treatment back in '93, when I was first diagnosed.  At the time, all they had was interferon injections 3 x a week.  I had a big problem with plummeting white counts and was taken off of treatment.  I tried it again several months later and the same thing happened.  So after that, I didn't attempt treatment again.  Now that I've been through cancer and still have mild cirrhosis, I am still not sure if I want to put chemicals into my body at a time when I'm feeling decent (except for fatigue.)

Also, I am 65 yrs. old.  I've been through a lot in the past 5 1/2 years--7 major surgeries.  If I were in my 40s, I would go ahead and take the treatment.  But at this point, I really am reluctant.  I've been ill long enough, and am able to live a reasonable life at this point.  However, I would like to get rid of the fatigue, and of course I don't want the cancer to return.  If it returns in the remaining lobe, I would then need a transplant.

Hugs,

Connie

Posted 9/10/2008 8:21 PM (GMT 0)
Hi Connie,

Didn't know you were 65 (sorry if that seems old). In case this helps - I was told chances wre not good after 50. Only meant as a suggestion & to help you make treatment decisions. I think you are doing marvelously for all you've been through. If you can tough it out - try to avoid treatment and wait for better ones. After all that you've been through why not consider a big TREAT!

Best,
Cary
Posted 9/10/2008 8:35 PM (GMT 0)

Hi everyone, I did combo treatment in 2006 for 6 mo virus became undectable after that then went off treatment after 3 mo virus was back!! my viral load at beginning was 3,000.000.000 after 6 mo treatment was 300,000 so went down alot but I had a hard time with treatment I had severe anemia withing 3 wk after starting hemoglobin went from 14 to 9.1 almost had to have transfusion but just did procrit shots to maintain levels it sucked!! then just did interferon for 6 mo did nothing. my genotype is 1a & the Dr that did treatment should have known to do full yr but did not . I am see new Dr & that is what he told me so new Dr wants to do full year but cant due to insurance issues. My dr now told me that they have completed a trial or still doing trial on drug to replace ribivirin for less anemia side effects but wont know till probably end of year or next.. so there is always hope.. all I know is treatment was really rough for me & now having issues with thyroid, diabeties, that I never had b4 so I am very unsure about treatment again but sometimes u have to go thru the bad to get to the good!! just some input take care

Leslie

Posted 9/10/2008 10:00 PM (GMT 0)

Cary, I never knew my genotype, though my hepatologist said that most patients in the U.S. are Type 1.  She had me tested and I asked yesterday if I am Type 1 and she confirmed that I am.  Didn't mention 1a.  What is the difference?

I was surprised that she didn't try to persuade me to try the combo.  She was very understanding of my position, given all that I've been through.  BTW, my viral count as of 09/08/08 is 300,000, down from 500,000 in Feb.  I have done nothing different except diet.  idea    She also feels there will be better treatment options available down the road.

Cary, I gave myself a treat in April:  Went to NYC for 5 days.  Had a blast!  It's my "hometown" and it was so good to be back there.  I had another hernia surgery on the horizon then, so I wanted to do it before that and the subsequent recovery.  I had planned to return this month., but thanks to the current economy, I wasn't able to do it.  mad    I am now aiming for late spring/early summer of '09.

Here's a question for all of you:  Have you ever heard of ANYONE who has gone through the combo treatment with few, if any, side effects?

Hugs,

Connie

Posted 9/10/2008 10:18 PM (GMT 0)
Hi Connie, I don't know anyone that had few or no side effects with treatment. My husband had some of the worst ones. My brother-in-law also did treatment. He was not affected as badly but still got pretty sick. We were told by the doctor that some people are able to handle the treatment with very few side effects that sub-side after they have been on treatment for awhile. Whether this is true or not, I don't know.

I will be praying that you are able to take your trip next year.
Posted 9/10/2008 10:23 PM (GMT 0)
"We were told by the doctor that some people are able to handle the treatment with very few side effects that sub-side after they have been on treatment for awhile."

Hi, Butterfly!  I'd like to know where these people are!!  tongue

Hugs,

Connie

Posted 9/11/2008 2:49 AM (GMT 0)
Yea I would like to know as well, when I did treatment it was terrible! but mostly because of anemia then I developed skin problems(purple spots on legs) so everyone is different & its your decision to do treatment or not, there is supposed to be new & better treatments coming in the future with less side effects I hope sooner than later. I am ready to get rid of this & claim my life back....It did get easier to tolerate the longer I was on treatment the thing I did not like was not being able to go out in sun . I live in Florida!! & its sunny all the time, reason was that medication & hot sun dehydrate you twice as fast than without meds.. I had to drink gallon of water a day.. anyone else have problems with treatment???

take care Leslie
Posted 9/11/2008 4:33 AM (GMT 0)

Leslie, I'm in FL, too!  NE FL.  As you well know, it's next to impossible to avoid the sun, although I certainly don't bake in it on the beach, being very fair-skinned.

BTW Cary, I can pass for 50, so no offense taken.  And my head still tells me I'm young, although the surgeries definitely aged me--undoubtedly due to all the stress involved.

Hugs,

Connie

Posted 9/11/2008 1:30 PM (GMT 0)
small world! I live in SW Fl, and have been having hurricane anexity!! lol but we have been lucky,, on top of other stress but getting used to it.. what surgeries have you had & if u dont mind me asking how long have had hep c? I was diagnosed in 05 Dr thinks I have had for 15 to 20 yrs, I traced back to 87 had accident & have to have blood then & also in 95 had total hysterectomy & had to have blood then so I really dont know I never did iv drugs but my Ex husband did so several possibilities, I asked him to get tested but refuses he is such a coward.

Anyone currently in treatment or anyone that had a successful treatment(SVR) curious to know
take care
Leslie
Posted 9/11/2008 2:30 PM (GMT 0)

Good onya Connie! We should all have treats more often!!! I love ice cream (bad) and allow myself a scoop of dark chocolate on Sat. night if I've been good that week.

& great question! I do not know (or know of) personally anyone who's gone through treatment with few side effects. I've only "heard" its possible from Drs. and drug companies. Absolutely everyone I know who's done treatment (including myself) found the side effects totally debilitating and many could not complete the treatment due to such severe side efftecs.

I would love to hear from those folks who breezed through treatment, worked full time & had a normal life throughout and are now "cured" - 1 year undetectable post treatment. According to Drs. they're out there, where????

Please respond cured folks.

Best, Cary

Posted 9/11/2008 2:47 PM (GMT 0)
Connie,

I forgot to mention - I would kill for your viral load! (not you - just a figure of speech). I try to hold mine below 1M. I'm alwqys delighted when I come in below 1M. You don't need treatment with this low (and decreasing) viral load, as a 1 genotype and because of your age, 50!

:-) Cary
Posted 9/11/2008 10:32 PM (GMT 0)
I have been wondering myself where all those people are. Especially after hearing so many other's experiences with treatment.
Posted 9/11/2008 11:29 PM (GMT 0)

Cary, I have no control when it comes to ice cream--I'd eat an entire container with no problem.  So I just don't keep it in the house.  I've been doing fruit instead.  However, I do get Edy's Tangerine Bars, which are yummy and especially refreshing in hot weather.

Leslie, I had a left hip replacement in Nov. '02, due to osteonecrosis (literally bone death.)  Three weeks later, a part slipped out of place and I went in for a revision.  That revision landed me in a body cast for 3 weeks and then locked hip and leg braces for 5 weeks...7 wks. in the hosp., one week at home in the braces.  Nine months after that revision, I had the right hip replaced, due to ON.  So that's 3 surgeries.  In 2006, I had another revision of the left hip replacement, due to constant dislocations.  In May of '07, I had the rt. side of my liver removed due to cancer.  I developed an incisional hernia in my midriff several months after that, but had to wait for repair until I was fully healed from the liver resection.  I had the repair done in Dec. '07.   It lasted about 2 months, but again I had to wait for repair until I was healed from the Dec. surgery.  May 29, '08, I had another repair.  So that's 7 surgeries in 5 1/2 years.  I think I've had my share!

I was diagnosed with hep C in '93 and definitely know that it was from use of IV drugs in '68-'69.  I would say that you probably contracted it in '87, as it takes decades for it to show up in blood work and symptoms.

Leslie, I know you are happy that Ike went west, although those poor people in TX look like they will get hit hard.  Are you getting some of the outer bands?  We are.  That's a huge storm.

Hugs,

Connie


Post Edited (hep93) : 9/12/2008 4:10:42 PM (GMT-6)

Posted 9/12/2008 5:01 PM (GMT 0)
Connie,

I too am certain I got Hep C from IV drugs, 81. I had symptoms within 10 years & was diagnosd in 95. So it definitely can show up sooner than later. I am on my way to Miami for a grade school girls reunion this afternoon and will try an Edy's bar.

Best, Cary
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