Wanting to start treatment but worried about it

[carov]

I was diagnosed 5 years ago.  I have had test done and a Liver Bio in 2003.  Turned out great, no scar tissue at all.  I'm now contemplating treatment.  I'm 26 and I understand that the longer I wait the harder it is to be.  I'm a genotype 1, sorry I don't know what my viral load is (Haven't been to the Dr for a while).  I'm so afraid of these side effects!  I live a good healthy life and I'm afraid of making a bad choice.  Help!

[can-do-man]

Hello there, so sorry your post got missed. Sounds like your having a heck of a time with this. A couple things, do you know what your starting viral load was? and did you have a 4 week pcr? Sounds like your doctor is not up to much on hcv? Sense your a geno 2, and if you had a 4 week pcr and find out you was clear then. You might want to talk with him on the new 12 week course that is being done. Rifleman man that posts at times here did the 12 week and showed cleared at his 3 month post tx. So it looks like it worked for him. Keep on your doctor and see if you can at least hold out for 12 weeks. Just don't cause yourself any harm trying. You have very little damage so time is on your side. But if you can keep going on do try since your at 6 weeks. Maybe some one here that has more knowledge on your sitution will see this and can be of more help... Best of luck to you, and keep posting so we know how things are going.

[sirensong]

I am sorry to post this here, but didn't know where else to post it.  I did post farther down, but was afraid no one would see it.  I wish I had never started treatment.  I felt I had no choice, as the doctors pushed it so much. Started blaming everything on hep c, and told me "go start treatment.  I am stage 1 grade 1.

I need some advice, I am really upset. I started treatment 6 weeks ago, 2B, on Peg intron and Riba. I had the quick hgb drop and was started on procrit, of which I have had 3 injections. I started getting debilitating headaches, and my eyes looked swollen, then pulsing spots in my eyes. Had eye exam, said all was fine. They did give me Vicodin for the headaches, but it didn't stop them, just put me to sleep. The doctor perscribed Bactrim for a possible sinus infection, and the headaches slowly stopped, but my eyes became more swollen. They said stop bactrim, and wait and see. Now I am scared to death I will get the headaches again, but they will not give me pain med. I have been practically unable to do anything in the 6 weeks I have been on this stuff. I want to quit, as I don't trust my doctors, I am so very emotional and now scared to death. And I am also mad I feel this way. I feel I will now get the run around. I had sinus problems for years that have not been adressed, they kept saying they thought my problems were due to hep. So I finally start treatment, as I didn't feel they would help me if I didn't. And now they are saying, it's your sinuses. I can't really explain all that has happened, but I am just fed up. Help! Any advice would be appreciated. Have not got my viral load back yet, but hgb is now 10.5. Now I still feel terrible, and I am again in waiting pattern. If I had been working, I would have been fired by now. I am ANA positive, low titre, the doc says.  I wonder if this is the reason I am having a hellavu time?

  

  




  

[FlGuy]

Sounds like you are good to go on the 17th.  Looks like St. Patty's day will be a little different this year. Folks will give you thoughts on use of the pre-filled syringes and their prep.  Hopefully, you will get some coaching/help from the doc's office for the first injection or two.  The copegus is the riba you've probably read about.  You should be making sure, with your insurance and pharmacy, about getting the meds, the refills and getting it all pre-authorized.  Work out a schedule with your doc for the periodic bloodwork (every two weeks or so), when pcrs should be scheduled and a plan for 'rescue drugs' that may become necessary during treatment. Not sure what 'HVV MA' may stand for.  AST and ALT are expectedly high, but not records. Good luck and stay tuned here for info and interesting chatter - it's not all sx and virus.

[Algernon]

TriHepGuy posted several articles about shorter-term treatment for geno 2/3.


12 Weeks of Peginterferon Alfa-2b (PegIntron) and Ribavirin Combination Therapy Shown as Effective as 24 Weeks of Treatment in HCV Patients with Genotype 2 or 3 Virus Who Had an Early Virological Response to Therapy

Short-term Treatment Duration for HCV Genotypes 2 and 3 Patients

Treatment for 14 Weeks with Pegylated Interferon Alfa-2b (Peg-Intron) and Ribavirin in HCV Infection with Genotype 2 or 3


Deb

[niki12]

Sorry to have to jump in on this post, but I want to respond to questions asked of me on my post about starting treatment.  I am a 1B.  I believe I have had Hep C for over 25 years.  Three years ago, I had a biopsy, it was Grade 2 Stage 2.  It has not changed much.  I just had an MRI and Ultra Sound which was fine, but my AST is high 245 and Alt is 83.  HVV MA is 7500 (whatever that is).

In answer to what I will be taking it is pegasys prefilled and also copegus.  My doctor did give me a prescription for Lunesta and also Provigil for fatigue.  He has not mentioned or put me on anti depresents, maybe once treatment is started.  Please keep giving me input as this helps me alot.

[FlGuy]

As Can Do says, you could be half-way done if the 12 week course is appropriate.  If you've read through many of the threads here you will see that sinus problems are fairly common, regular ol' headaches are even more common.  Hopefully, people with sinus issues will bring you some ideas.  I had headaches throughout treatment (TX) and used aspirin and tylenol alternatly.  Watch the aspirin if platelets are low though.  Tx is not easy for many people and it's best if you have a doc who is up with the latest trends in treatement.  Since your doc has you on procrit he seems to be knowledgeable but he should try to help you with other sides that may occur like depression or sleeplessnes.  Try to get some info on your beginning viral load, recent pcr results. The bad news is the effects you're feeling, the good is that you have the HCV which is the most successful to treat.  How much riba do you take each day?  Are you on a regular injection of procrit now?  Have you been compliant with your med schedule? - it's important. Good luck.  Feeling better will help you crash this virus on the rocky shores of IFN and riba, sending this disease to it's watery grave.  Keep singing if you can.

[NYgirl]

Deciding on treatment is a very personal decision and there are LOTS of factors to think about.  Insurance, job, health, biopsy results blah blah blah.  Only YOU can really decide.

There are good reasons for you to treat now (low or no liver damage would make it easier for you to clear) but because of that same number you could wait until your liver was in WORSE condition.

To me that doesn't make sense much - I couldn't wait until I was in WORSE shape when it was HARDER to clear really.  PERSONALLY if you are a zero you do not need to do anything right now but it might be worth a stab at trying to get rid of it while it's "easier".

Being a 1 you know there is a 50-50 chance of clearing - while those odds are pretty good...they aren't perfect are they? I wish I had treated years ago before I was a 2/2-3 but I didnt know that I had it.

I wish you the best of luck in deciding.

[can-do-man]

Some of us here are in a fight for our lives, we have spouses, kids, and grandkids. Yet we come here to do our best to make something good out of a bad situation. What i don't understand is that people who have won the fight wants to make what seems to me as totally unfounded accusations. But i guess thats how some people get their jollys off. Sad, but to each their own.

[lovingwife711]

Thank you so much for your help.  Husband and sister both on anti-depressents.  Husbands rage only happens once in a while but it is bad.  This is soooo not him, he never even raised his voice before.  Now the littles things will set him off yelling and ranting.  So far it has happened 2times.  Then the next day he is a crying mess.  In the 7 years we have been together he never did this, not even when he use to drink (has not drank in 5 years).  Sister is just more depressed, can't get out of bed for days at a time.  Husband also does that but that does not bother me as much as the yelling.  He also has other medical problems that I am use to him being in bed for the day sometimes, hip replacement and back surgery.  The dry heves also get him down but I knew that would happen.  But other than all this I am doing well.  Learning alot.  That keeps me from being depressed.  The only hard part about this is that we were going to try and have a baby this year but as you know that is on hold and yesterday was my 36 Birthday and I got kinda down thinking we would never have a baby.  By the time treatment is over and we wait the time for meds to be out of system, I feel like I will be to old.  Not to mention, my husband is 10 years older than me.  Oh well, if it is ment to be it will be, if not there is nothing I can do.  Sorry needed to boo hoo for me for a sec.  Thanks for listening.

[jojogirl]

thanks just with I,ve looking for information about treatment

[PKCO]

" no scar tissue at all."

No scar tissue=no fibrosis=no damage



Get yourself another bx. If you still have no damage you have absolutely no reason to treat right now. Even if you are stage 1 you have no reason to treat. SVR rates aren't significantly different for 0 or 1. In fact, neglible would be an even better word.

Best regards,
PK

[amommy]

Hi Carov,
I completely understand where you are coming from.  I am a healthy 28 year old and it was VERY hard for me to get over making myself more sick to get better.  I will say though tx is no picnic but it is NOT terrible either.  Everyone reacts differently, and I have had some unpleasant sides come and go but overall, I am able to function well.  I struggled with this decision for sooo long, but then I finally realized that unless I tried to get rid of it, it was going to consume my thoughts for a long time to come and I couldn't live like that anymore.  Anyway, good luck with your decision.  We are here for you.  One disclaimer is that I am a geno 2 so I will only be treating for 24 weeks at most, and I realize how fortunate I am for that.  If you get another bx and you have little to no damage, it might be worth having a discussion with your doc about the drugs in the pipeline or maybe even getting into a trial?  Hang around here, there are some fantastic people and you will learn a lot and be very supported!  

Strator, it ALWAYS brightens my day to see you posting!  Hope you are hanging in there my friend.  Weather getting warmer for you?  And is that making it any easier to get out and work?  Thinking of you my kind friend.  

Beagle, I am sorry to hear about your hgb.  I really hope you can fight for more of the rescue drugs.  Keep your positive outlook my friend, and it will work out for you.  I'll be sending lots of thoughts and prayers to you!

[beamishboy]

i am feeling a bit like cardboard lately-maybe an old box of fiberglass insulation,cuz i'm itching bigtime!!.....Good to see ya post & i'm not surprised yu r gettin b****y -whatwith repairing antique washin machines installed in matchboxes,taking care of business & son & wheelchair bound dad-You sir,are a nominee for Sainthood.....are yu needin any procrit to boost hgb???........Ohh,don't ya just "luv" it when the super B!%%h on wheels remarks on your less then perfect behavior...heck man yur doin toxic meds Plus!! -Somedays,-i need an old appliance to pound into scrap metal-"there,now it's Fixed!"--have a good day saint DON.

[cuteus]

young age, mild damage, low viral load are real good factors for complete erradication of hcv, if you are a female it brings the SVR chances higher still. For people with those stats the chances of clearing are bt 60 to 80% according to some articles I read. if you have an early viral response gives you the highest chance. There is a member here who did 24 wks on geno 1 and cleared the virus. She had all the above factors on her side, except the age, and she made it. She was able to shorten the tx(treatment) and have a good shot at a cure, because she was undetected for the virus before wk 12. Here is an article for you to read
http://www.prnewswire.co.uk/cgi/news/release?id=143867

the new drugs might be here in approx 5 yrs, my hepatologist guesses, you could be cured by then, or you could learn if these current meds are for you(in side effects, and effectiveness).

a good book to check out was written by this prominent hepatologist
http://liverdisease.com/
http://liverdisease.com/treatmenthcv.html

[Forseegood]

Hi, I think I'm a little confused and need to know some more about your posting...firstly, you say you were diagnosed 5 years ago? how long have you had the disease, do you know? If youre 26 and have only had the disease 5 years or so, that's a lot different then being 26 and you've had the disease, let's say from birth...the reason I say this is because this is a very slow moving disease, just on the average, it takes anywhere from 15, 20, 25, to 30 years before it even starts to do damage...ususally 20 years or more...

I would take "length" of disease infection into consideration, most people don't seem to talk about this much...

Cause if I had perfect labs, no symptoms, and no damage at your age? with only a few years of infection? there's no way I would treat...we still have to measure the possible damage the meds themselves can do against your particular timeline...even if the new meds don't come for 5 years you have time...I know this is an unpopular view with some people, but still has it's valid points...and I think it would be wise for you to consider all sides...I've had it I think over 30 years and I'm only beginning to see damage, there you are, I'm not the only one like me...

If on the other hand you've been infected since birth, that changes the whole equasion, and I would at least consider treatment all things being equal...and still this wouldn't be something I'd automatically just jump into...I'd have to look at many issues...

NYgirl, yeah, don't get me started, we're in this war with no long term plan and no way out, hemorraging billions per month with such a loss of life on all sides...think how many diseases we would be able to get the jump on with even a fraction of that money used for research!!!! How many schools and hospitals? and they are now planning on cutting off a lof of goverment medical funding in order to help pay for this badly planned boondoggle? to cancer research, among many others??? I could scream!

[can-do-man]

Am i missing something here? She says....Turned out great, no scar tissue at all.
_______________________________________________________________

Wheres all this mild damage coming from? PLEEESE people

[can-do-man]

Vertex  is expected to begin a three-month study in the second quarter, which will determine the benefits of VX-950 compared with pegylated interferon and ribavirin, the current standard of care. Vertex plans to begin Phase III trials in 2007 with the goal of filing a new drug application in 2008.

[cuteus]

hey sweets! no scar tissue, doesn't that mean no cirrhosis? there could still be inflammation with no scarring=mild damage. but I could be wrong...

how is life treating you today? Only 11 days till Spring, 23 till April fools day, and 37 till tax day. how many weeks till your EOT?

I kind of miss spacecoast lately, can you believe that?

[can-do-man]

I would think her doctor would have told her. Still don't see where we start saying there is. Could be wrong though.

You might miss spacecoast but i kinda like the way its been peaceful here.

I just think this swaying people is wrong, this tx. and sx's are real. Why not let them and their doc decide without the swaying?












y

[Upbeat]

Light is at the end of the tunnel. All the ifs and maybe's will all be known soon.  9 months is what were looking it.  Not really that lomg after all the years of looking for something new. There will either be svr with vx-950 or not. I for one will be happy to get beyond all the hype and get the real story.

                                                           Ron

[can-do-man]

Sorry, For what? I think your husband and sister is very lucky to have you. Yes tx is a stress not only for them but you also. I found that when i feel like im going to go off i head to a empty room and just set in the quite. Everyone knows to just let me be. Your hubby needs to understand this is as tough on you as it is him. Your only 36 you'll still have time for kids. Heck at times i have a couple you can have.

Do your self a big favor and find time for you. You've not only earned it but you need it. Come here anytime you feel the need. sometimes just coming here and venting can be a big help. Theres not a person here that would be upset with you for coming here for any reason. Hope you do have kids, sounds to me you will be a great mother. Hoping the best for all of you.

[can-do-man]

sunday was shot 11 of 48 or more, april 15 is tax day, don't know what your getting at with the rest though.

[Upbeat]

I have listened to all of vertex's web casts. All of the phase 11 trials will be over by the end of the year. Up until now they have not tried for SVR. If they manage SVR with their phase 11 trials and they go into phase 111 next year then its all over but the shouting. However if they do not get SVR with their phase 11 by the end of the year then it won't work.  This is why I said in 9 months we will have the answer.
                                                       Ron

[cuteus]

can do
just stuff to look forward to for some of us, not that I am planning any pranks for 4/1,... yet.

Don't suffer through pains, take whatever is good out there, no need to suffer more than we need to. I sense something might not be at its best lately with you. Tx was the longest torture I ever wanted to feel.