to treat or not to treat hep c

[flojohead]

i was just diagnosed 11/05, which was quite a shock since I requested PCR in 1999 and 2004 and my doctor told me both times that the results were negative.  Then I found out last month that she read the results incorrectly...wow

so, I am stage 2, grade 2, and my vl is 3,500,000.

the thought of treatment is overwhelming to me right now.  one day i think do it and the next i think don't.

what do you all think

[amommy]

Hi there!  Welcome :)  I am completely and totally in the same boat as you right now, and unfortunately have not had an ephiphany either way :(  It is really a very personal and difficult decision to make.  Lots of factors to consider.  As the good people here have told me, support system is a huge factor.  For me personally, I've been weighing the pros and cons and literally change my mind about 100 times a day.  Best of luck in such a personal decision!  You can always come here for support :)

[worrywortmom]

janis7hepc.com is a wonderful place where you can chat with people that have or have had hep-c. They are not doctors but i have found that no question is a dumb question and they will make you feel comfortable with your diesase. Try them its a wonderful place as I would have been lost without them.

[NYgirl]

There are a lot of factors for you to consider and think about but I want you to know that treatment is DOABLE.  While it's no rosy fun time...I am a 2/2 (Geno 1a & 1b) baseline vl 568,000 - 4 week pcr was only 411 and waiting right now for my 12 week pcr to come back.

As a 2/2 I decided I had better try and treat now before I progressed further.

It's a personal decision for everyone here and I hope that if it's just "fear" of treatment that you decide to try it.  I'd be more fearful of progression than side effects (which we were all afraid of for sure).

D

[sindog]

Hi, I usually don't post at work, but i too was very fearful of treatment. Here's how it's going for me. I get up at 5 am. I take my riba and an anti anxiety pill. Go to work, 8 hrs. Do a little xmas shopping after work. Go home, eat, take pills, another anti anxiety pill. Sometimes cook for the kids, my wife works late. At 8:30 I take a sleeping aid and get 8 to 9 hrs sleep a night (I used to run on 6, but that's not possible). I actually look forward to shot night. I take a anti sickness pill which also makes you sleepy, my sleep aid, tylenol, and sleep for 10 hrs. I have rental houses and I've been working 4-6 hours on Sat & Sun remodeling. I take alot of different meds for side effects but my life is near normal. Just my experience. Also, I take my 4 week PCR today. Am nervous again.

[FlGuy]

Did you get results yet?

[NYgirl]

I am going to call in a little while.  I figure it usually takes a week so I am waiting till the last second...maybe I'm nervous?

I am going to call right now what the heck - either they have them already or not.

Holding breath...but thinking positive!

[NYgirl]

No results yet - still waiting for the PCR to come back she said try late in the day Monday :(  boo hoo

Well I KNOW It's undetectible anyways so really it's no big deal at all to wait a few more days (but I would have like to party it up this weekend with a few extra sundaes to celebrate the good news!  :)

Ice cream can be as satisfying as a good bottle of champaign used to be at one time ;-)

[sindog]

I am nervous for you too.

[FlGuy]

There always seem to be a lot of anxious waiting before and during TX - like another SX.  Over the next few weeks will be online a little less but will look forward to seeing you results posted.  Enjoy the sundaes! Family was away last weekend. Got a pint of Ben&Jerrys.  Spooned to my face right out of the carton. Heaven! - no sharing. Seemed almost a litle sinful.

[flojohead]

I do have a different primary care doc and an infectious disease doc.  My previous doc did not read my lab report correctly...twice.  I have been having symptoms and elevated AST and ALT for years, which is why i requested the PCRs in 99 and 04.

The infectious disease doc seems good, except when i told him of how i have bouts of extreme fatigue, he said that was probably from old age!!!  I am 51 and the fatigue started when i was 44, not exactly old age, my friends don't have extreme fatigue.  so except for that, i liked the physician.  he is recommending immediate treatment for 72 months.  i am type 1a.

i do wonder if i had treatment in 1999 if i would have a better outcome than now.  maybe that though is just a waste of time

thanks for all the comments...this is a great place

[cougareyes]

There is no correct answer to this question, just my 2 cents. I believe we know so much now on how to monitor the effects of HCV so that it can allow alot of people not to treat. Not knowing I had HCV and adding a tanker full of alcohol in my body it still took 25 years for my liver to get sick.
Watching what you put in your body and taking an active role in improving your overall health may be a better way to go than the current course of treatment. When the numbers really break down the odds aren't that great(I live in Vegas and the House always wins), and the risk of the meds are greater. Being on tx risk your overall physical and mental health(short term and long term); your finances, business and personal relationships.
For me I had to be sick enough to know I was making the right decision to gain a better quality of life; not risking that I could end up worse. Just one man's thoughts.....Peace

[cuteus]

Since you know that you are a stage two, I guess you must have had a biopsy?

I would have lost confidence in that dr, the moment he said I read that incorrectly, for 5 years? Was he too sure of himself to call someone and confirm what he thought was the result? GGRRR! I wish he was my doctor, I would have let him have it.
Now you are in schock and feeling lost, we all were, in the begining. Many experts believe that you should treat while your liver is in relatively good shape, because the sides tend to be less severe and the chances of completing and achieving the end of tx with a sustained viral response (SVR) or cured as some drs call it, are greater than when your health deteriorates.
here is an article on the watch and wait
http://www.prnewswire.co.uk/cgi/news/release?id=143867
Also to keep in mind is that although it is called hepatitis, because the virus prefers that organ for replication, it is not only a liver disease. Your whole body suffers from the presence of the virus. Some research finds it in the CNS, intestinal tract, adrenal, lymph, etc. It can affect the kidneys also.
on extrahepatic symptoms:
http://www.medadvocates.org/diseases/hcv/extrahepatic.html
you have to decide what you want to live with, hep c and possible development of further symptoms, or a temporary treatment discomfort that can give you a 50% or more chance of a cure.
The so called long term effects from the meds, which most people do not get, or get in a non severe, non dysfunctional form, have not been proven by any medical research I have read. You will hear a lot of anecdotal stories that will not include whether they have these symtoms to some extent, prior to tx.
I was a 1a, 50+, mild liver damage, extra hepatic symptoms, willing to give tx a shot to see how I would respond to it, and to get rid of this pesky invader. After 74 wks, which included dragging myself to work every day and to the Y, twice a wk, I got my SVR. NOT A MOMENT OF REGRET.
I hope you find your answers. Listening to everyone's reaction to the tx and choosing from that experience will be your best resource.

[NYgirl]

"Not knowing I had HCV and adding a tanker full of alcohol in my body it still took 25 years for my liver to get sick"

It's the same for me.  I am not completely sure of when I actually REALLY got this disease but the doctor SAYS 25 years ago...I wish just for the fact of the How LONG did it take to progress to a 2/2 - 2/3 result but have to go with his numbers.

If I DID get it 25 years ago - with the amount of drugs / alcohol that have gone in to my body it's literally a MIRACLE that I am not a 4 and it HAS to be a slow going process.

Still I was so anxious to treat this and try and reverse some of the damage that nothing in this world could stop me - not even
A-N-E-M-I-A lol!!!!!

[DoubleDose]

Like most of you, I had a variety of very bothersome symptoms, for years before being diagnosed with HCV.  The fatigue was very debilitating, anxiety attacks for no reason, gastro-intestinal distress, balance problems (in my twenties and thirties!), and a gamut of related stuff.  Of course back then, it was treated as some sort of psychological problem.  Doctors dismiss what they can't diagnose.

Later, long after being diagnosed with HCV I still have encountered physicians who will say that 'everybody gets fatigued', 'the liver can't cause pain', (of course meaning the HCV can't be causing the commonly experienced URQ pains!),also, 'I don't think your skeletal pains, or muscle aches are caused by HCV' (even though this is a known diagnostic marker for HCV!), 'I don't think you have Sjrogren's Syndrome', etc. etc.  

It is discouraging, depressing, and infuriating to hear highly educated 'experts' spout out 'truisms' about the disease, that contradict the experiences of the vast majority of real HCV infected persons.  What are they thinking????  And why are they not more interested in pursuing the real 'truth' about this virus.  Listening to the patient should be the starting point for any exploration of the disease.  How else would they categorize symptoms and diagnostic signals?

Anyway, off the soapbox......continue to 'give it to' doctors who have their heads up their *#%&**#, and realize that there is much not understood about the virus by the majority of physicians around the world.

Happy Holidays!!!!!!

DoubleDose

[cougareyes]

1a, stage 3 w/fatty liver, and symptoms of advanced liver disease prior to tx.
10/04 diagnosed at 3.5 mil vl
6/05 pre-tx at 1.06 mil
9/05 12-wk pcr undetectable at <50
today 24-wk pcr undetectable at <50

24 more weeks for me, yippee.
Good Luck to everyone, Zombies-R-Us.......Peace

[GoofyDad]

Hot Damn!

Keep at 'em, Buddy!

[beamishboy]

Wa y to go!!!! Thanks,i needed that today........every sucessful trx helps keep my eyes on the prize..GOOD LUCK

[cuteus]

wishing you many more negatives!

[GoofyDad]

I have a host of little anoyances that some would attribute to Hep C. Soft teeth - bad gums - recurring back pain. For purely intuitive reasons, I don't associate these with the Hep. Just my take - everyone is unique and we're all affected differently.

Have a great day!

[friole]

cougar - You have come a long ways.  My very heartfelt congratulations. Half way there too.  -- Kind of funny isn't it - when you tell non hep C'ers that you are clear -- don't they all ask, "well, can you stop now?"  --- don't we wish. I am so glad you are feeling better too.

flojo - So very sorry that you have hep C. It truly is unbelievable that your doctor misread the lab.  However, the nurse at the GI's office has misread a PCR to me on the phone (mixed up copies and IU), and so has the nurse at the hemotologist's office (got confused on the log reading and thought it was an IU amount (I was really curious when she told me they ran a test sensitive to .7IU - when in fact, it was the log range).Get copies of everything and learn to read these tests yourself.  Frankly, I think they are hard tests to decipher.

All you really can do is go forward from here.  I was diagnosed in May and started treatment in July.  I made two lists -- reasons to treat and reasons to not treat -- and just started listing things.  Your health, the way you feel, is, of course a big factor.  Your age - are you past child bearing age, or do you want kids?  Is your insurance good?  What is your age (treatment (tx) is easier on the body and more effective when you are younger).  Are your committements such that you could treat right now (we all have to reduce our obligations somewhat.  I work, but do little else outside of work).

We were all scared, as you are, but you are amoung friends here.

frijole

[vegas777]

he coug was just browsing through here and saw your thread - 24 weeks untedectable...

That's fantastic news coug!!  I am so happy for the "big cat"..

*dipster*

[flojohead]

thanks to everyone.  I need to hear some positives about treatment.  

I've probably contracted HCV 20 to 22 years ago.  i stopped drinking and drugging 19.5 years ago.  So, the disease has been progressing rather slowly.

I do have good insurance and a job that will allow me to be flexible in work schedule.  I also have good disability insurance, if I should become disabled.

My health clinic's risk management is involved with my case and they are willing to settle out of court...whatever that means.  i am looking at what all of the treatment will cost me with co-pays, time off work without pay, loss of $$ paid into my retirement account, damage to my relationships and a whole lot of other issues that have not come to mind yet.

I have been having RUQ pain for months on and off.  They did all kinds of gall bladder scans and ultrasounds and they didn't find anything with my gall bladder.  They did an endoscopy and the GI doc started looking at my file and she insisted I had HCV.  I, adamantly, stated no, I've had two tests and they have both come back undetected.  The GI doc sent my doc a letter and advised her to review my file and find out why I think I don't have HCV...bless her heart.  If she hadn't taken the time, I still wouldn't know.

I did have my gall bladder removed on 11/23/05 and when i went for my pre-op physical on 11/22/05 is when my doctor told me of her error and that i did indeed have HCV.  I was in shock, I had been seeing this doctor since 1996 and I couldn't understand how she misread the results.  She showed me the reports and both of them very clearly stated DETECTED.

So, now I am concentrating on getting the best medical care I can get and remain as positive (mentally) as I can.  I am going on a vacation to a warm sunny place the first week in January.  When I return I will have made a decision of whether to treat or wait.

So, there you have my story!!!

Thanks for all the support.  I know I'll need more and more.

[Moniker]

Congratulations cougareyes. Half way - doing great!

I'm 23/48, genotype 1a. I was undetectable at 12 weeks. They just took another viral load test yesterday, Thursday - don't have those results yet. I'm getting close to half way too.

Bob

[Moniker]

Think it over. Take your time. There is no need rush. HCV is slow.

I'm 1a, and almost halfway through treatment. It's no fun, but it's different, an experience. I sure can't think or work at 100%. I have several unpleasant side effects - but I am undetectable right now, and so I'm glad I'm doing the treatment.

Good luck.

Bob

[njrsl]

Hey dude!! Cool name!!!! hahahahhaha!!!! This bunch gona make you laugh snotty!!!!! hahaha!!!!we might be starting same time!!!! wll get them going then!!!!

[Tallblonde]

Congratulations on being clear at 24 weeks!  I can't believe you're half-way done already.  It seems like just yesterday you were debating about whether to treat.  I hope this good news eases any doubts about the wisdom of that decision.  Here's wishing you smooth sailing for the second half of the trip and a big SVR at the end.

Susan

[jmjm530]

Great, GREAT news !!!

I know you've been having a rough time with sides, and if it's any consolation my treatment finally started to get tolerable around week 39 after some very rough times. In fact, got real close to throwing in the towel about six weeks ago, but now may extend to 52 weeks. I'm sure this PCR will be your favorite holiday present.

-- Jim

[cougareyes]

Thanks everyone, the reason I'm such a hard a** when it comes to tx; it could be the most important decision you'll ever make in your life other than having kids. Once I made the decision to treat I never looked back, didn't second quess, I knew I was going to be in it for the long haul. I set myself tx parameters of just how far I would go and knew I wouldn't stop unless it was life threatening.
Daily you wake up with reasons to throw in the towel, even today I figured if it was back it would give me a good reason to stop. It took me 6 months to make the decision to do tx after I was diagnosed, again there is no wrong decision; just know what you're getting yourself into. Beyond everthing else you have to be mentally prepared to deal. I know regardless of the outcome, if I throw out my thyroid, if it takes me a little while to rehab after it's all over, whatever; I made the right decision for me.   Sorry for preaching....Peace

[Magnum]

Amazing! Yes, it's amazing you can do all that while under treatment. I'm ready to start my 4th treatment in two weeks and I remember I was always panting and gasping for air while doing physical things on the last three treatments, although I never had Anaemia.

Do you take Procrit? Is Tylenol okay under treatment? I was told that a steady dosage of that isn't good for the liver and instead, I should take Ibuprofen 800mg when in pain.

Naturally I also have the very powerful Oxycontin 80mg, which in my opinion is overkill for pain if you're going to do anything physical, but a wonderful buzz before you're knocked out. I'm interested in how long you've been feeling like you do under treatment and how your white blood count was last...

Magnum

[friole]

Sounds like you are working out your decision to treat quite logically.  You mention that the risk management at the clinic will settle with you (I assume because of their faulty diagnosis)- is that why you are trying to determine the dollar value of your treatment?  Seems like this settlement will not be based on that at all because those costs would be the same 5 years ago as now.  Probably you just need a lawyer to protect your interest and make sure they treat you fairly.

I am 58, found out I had hep C antibodies in 1993 but ignored it more or less. This year I decided it was time, so I had the tests run, found out the virus was active, and decided to treat.  I am Genotype 1a, pre treatment viral load was 1.52 million IU/mL, and my biopsy was grade 1, stage 1.  So even though I estimate my infection to have been 35 years ago (IVDU), the damage was minimal.  I am now at week 23 out of 48 and am clear.  I work full time and the only day I missed was to get the biopsy (altho I do admit to being much less productive). My sides have been fairly good - almost none at all for the first 12 weeks - but my white blood and red blood counts have dropped to the point of needing additional meds to boost them (this is common and you need to consider the cost of those - Procrit and Neupogen - when you are looking at co-pay costs)

Cost wise, I pay 4 copays of $30 a month for meds which retail at close to $6000. My trips to the GI are minimal - pretreat, week 4, week 12, and now week 24.  I have labs run - at first weekly and now every 2 weeks, but the cost of that is minimal too.  The PCR's are run at 4 weeks(if you can talk the doc into it) and 12 wks, 24 wks, 36 wks and 48 wks.  Hope that helps.

I like your name too, but what comes to mind is FloJo - the incredible athlete - not a snotty nose -- LOL

Good luck with this difficult decision
frijole

[Forseegood]

Congrats Coug! that'll prob give you the impetus you need to keep going! That's really great! Maybe all those "peace" signs gave you  good karma, wink wink.

Kalio: Oh, I know what you mean about docs, I guess I've told my story about having severe panic attacks in my 20's, so much so that I was going to the ER, went to 3 different Bev Hills high falutin' docs and they just kept giving me valium and sending me away. Went to an "integrative specialist" he ran tests on me cause he suspected hypoglycemia, he was right, told me to eat every 3 hours or so, protein with complex carbs, zap, my severe panic attacks went away. Now some moderate anxiety is with me, prob due to having menopause and hep at the same time. Sometimes when docs can't properly diagnose, they tell you something to the effect that "everybody has it" which is code for it's all in your head, or they just give you a pill.

Either way it's a way to shut you up till they have to see you again. I also think the tests they have now are just not advanced and sophisticated enough to diagnose some of these conditions that go along with chronic illness, and they don't like to go by "symptoms patients tell them about" unless they rely more on their own intuition...and I watch that TV program "House" to get some of that, wouldn't it be great if we could all get a doc like that!

Lazyhead: many people are in that same boat, it's good that you are studying research and trials, listening to stories, etc. Finding out all you can about hep c, you'll come to your own decision about it...as you can see many people say that treatment is doable. Hope you can get some answers soon.

[NYgirl]

Just to reiterate what the others have said - treatment is a personal decision based on a LOT of facts.

I am 13/48 Geno 1A & 1B. staring vl was only 568,000 BUT I have Grade2 Stage 2 so it's NOT a viralLOAD thing as some people (like Pam Anderson) falsley state.  Watching your viral load doesn't mean anything really EXCEPT for reaching SVR you know what I mean = watching your liver with biopsy is a MUCH better indicator of deciding to treat.

Had this 25 years supposedly - used to be a hard core drug lover, had 4 transfusions so who knows WHERE and WHEN I really got it. That drove me crazy until I realized it didn't matter at all the fact is that I have it end of story.

I am VERY glad that I am treating. I find it doable (except the anemia which they fixed with Epogen).   I was 411 at week 4 and expecting my 12 week back probably Monday.  It WILL be undetectible cause I say so!  and If it wasn't...I would just continue on killing these suckers off and getting them out of my body as best as I can.

They don't deserve to be here at all.

Best of luck with your decision.

[sheann]

I have been trying to get into this forum for ages, Angie, whom I consider a dear friend from Janis & Friends, suggested I stop by and share my story. So, after much ado with missing password, I am finally here:)  I have been infected with HCV since April of 1981, and until 6 years ago, thought I was just a "carrier" because my labs were all good, and I felt fine.  Then I started to get sx, like angioedema, I have yet to hear of anyone else with his particular one, but interferon is known to cause it and we make interferon naturally in our body.  Enough said on that one.  It is a miserable sx, swelling my lips and tongue and making me feel miserable.  So off I went from doctor to doctor, in every field from immunology to hepatology and finally ended up in Dr. Eugene Schiff's office at UM in Miami.  He told me I had very minimal disease despite my sx and advised me NOT to do the current tx.  I am still on hold, I am 70 years old in about 3 weeks, and biopsy twice, five years apart, showed Stage 0, Grade 1, not bad after such an extended period of time.  Dr. Schiff is convinced I will outlive the disease, but trust me, I want it GONE!  I have been in several trials, though none have worked and I just pray one comes along before I progress as I really don't want to do the interferon tx.  I do appreciate that many people have no choice and I am always happy to hear when someone goes undetectable.  Often I wonder how high the price was and have seen it go both ways.  Some people feel sicker post tx and some feel great again!  There is no one answer for all of us, we all have to make this decision and I respect both ways.  It is difficult either way, but those of you who treat at least have a hope of getting rid of it.  

Wishing you all a very happy holiday season and a Very Happy New Year!

Love to all,
Sheila

[Forseegood]

Great your here woman, it's wonderful to speak to someone who is so positive, and we all want to hear what happens in that trial you might get on! Have a great cruise!! I can see you know on that boat, cha cha cha!!!!

[flojohead]

thanks to all...I've decided that I will do treatment.  Now, it's a matter of when to start.  I have a number of big decisions to make before i start treatment.

I also have a partner who refuses to get tested.  We used IV drugs together 20 years ago and his ex also is positive for HCV.  What are the chances he doesn't have it?  

I had a Hep A/B shot on Monday and a flu shot on Wednesday and I am feeling extreme fatigue and aches in my bones and muscles.  Doctor thinks my immune system is just to taxed right now.  Hope that's what is going on

Happy Holidays to all!!  

[sindog]

Before I began treatment I also was extremly fatigued. Not only is your immune system taxed, but you are also under alot of stress. After beginning tx I still feel fatigue, but it doesn't seem as taxing. I think as the virus is attacked by the drugs, the effects of hcv are decreased. Of course, then you have to deal with the sx. Good luck, we all know how your feeling.

[cuteus]

good luck on your quest for hcv erradication.

as for your partner, I think you know the answer to that one.  You might want to take precautions, once you clear the virus.  Although transmission is low with intercourse, females have a little higher risk than men, due to the time they are exposed to the male secretions. Then you have to definetely separate your nail clippers, razors, toothbrushes, etc.  One thing at a time, get well first.

[joeblstrn]

I am 34 have hep c for 15 years i am in stage one. Will I out life this damn thing?