Manual on Side Effects of Combination Therapy for HCV

[twotells]

I forget who provided this link before, but it is truly valuable.  You have my thanks.  It is a manual for Gastoenterology nurses, covering side effects, complications, and contraindications for the combination therapy that many of us are on or are considering.  The download is free.  You can also order a copy.

Link  or  http://www.projectsinknowledge.com/Init/G/1628/index.html

[honey1616]

Yes this is great..Its great for people starting out and wanting to know all the sides  I also downloaded this and has helped alot!  Thanks Dave!

[DownThisRoad]

Sorry to break into this post but I wanted to say that I am really loosing it and have been loosing it over the past couple of weeks now and this doesn't seem like me at all.  I've been able to pretty much keep my chin up and take the treatment punches as they come along.  My feelings and emotions are really getting the best of me.  Seems as though I can't put everything in its place anymore. In these last stages of my treatment, I feel more devastated than ever.

I should be completing my treatment next week; at my 48 week point however it was announced to me last week that I need to do an extension of the meds.  This has really thrown me for a loop and I'm not feeling well about this at all.  Since I found out that I will continue on with the medications and not be able to stop at my 48 week goal, I can't get all of this out of my mind and put it in it's place.  I want to be able to do just that 'say hey you...gotta do a few more weeks now...what the heck...you can do this...right?  Yes, right you can'.  I just want to leave this alone now for a while.

I've tried so very hard to be strong and get along with this treatment the very best I can.  I would like to think that I've done a good job with striving towards and accomplishing my goal of taking the meds day after day, after day after day.

I feel so overwhelmed. I keep thinking and re-thinking how long its been since I've been on this medicine that's when I see it all flash right in front of me.  I keep thinking about how powerful this treatment is to do and how it robs you of your life, body, mind and soul.  I keep thinking that I should be done and have this over with....I just keep thinking, and thinking and thinking.

I now start to cry when I get ready for my day.  I now cry during the day. I am now up at night pacing the floors and telling my husband that I'm just not sleepy.  I now cry before I go to sleep.  I now sit and daze out somewhere (really don't even know what I'm looking at).  I cry and feel so badly for the new people who come on this forum and announce that they have hepC and have to treat.  My mind is wandering with all sorts of things like why does this have to happen to people, why is this so painful to do these meds only when we are trying to heal ourselves. Is this really going to work.  If I have to retreat will I be able to handle it again?

These last few weeks are consuming all my power and energy that I have left. I truly do understand why I need to do more than 48 weeks. I know that it is only for my benefit and may/can possible up my chances slightly to stay clear of this virus.  I understand all of that.  I just want this treatment to be over.  I just want to have my life and myself back.

I'll be able to discuss things with my GI on the 16th.  Discuss things like how much longer will I have to do the meds....period.  Discuss what I tell you all on this forum and what we all discuss with each other....never.  He will never begin to understand. He really wants to and is so compassionate towards me and his other patients.....but he will never begin to understand.

[GwithHepC]

Hi:

I am so sorry you are feeling so badly. It must really suck to be so close and find out you must continue.  You had the strength to make it this far, so you must have the strength in you to go on a bit more.  I am sure the extra time will go by really fast although it doesn't seem like it now.  My prayers are with you...

G

[Revenire]

How long are you going to go? I think sometimes these doctors wait until we get to week X and then tell us "By the way, you're going to do another X weeks." It is tough thinking you're near the end and then this gets sprung on you but it is for your own good.

Where are you at the damage leve and when did you clear?

[willing]

dtr: several others have reported a feeling of being overwhelmed on being told they need to go on for X more weeks just as they were staggering to the finish line. The last stages of tx can be so difficult it seems important to adjust one's mental countdown timer in advance : if you're going to do extended tx make that decision early on so you can prepare for it. Unfortunately, Drs don't seem  to be sensitive to this. This is a hard moment - once the news settles in you'll find the strength to keep on marching. It might also help to evaluate the extended tx decision yourself rather than simply take your Dr's recommendation as this involvement will make it easier to take on the commitment. There's little data, none conclusive,  so it comes down to judgment. I spent a lot of time wondering about extended tx in the 30s and finally decided against it but have no real confidence that this was the "right" decision. All the best - it will get better.

twotells - I believe BobK posted that link. IMHO, the projectsinknowledge site is full of useful CME information and is a very good resource.

[honey1616]

I feel so bad for you having to go through all this!!  I just have no idea on this stage of the game...where you are at I mean!  Its of course,,,easy for me to say,, Continue on but when I get to 48...I might not still have this happy go lucky...fresh idea because I'm in the beginning.  What we need here is someone coming into this thread thats at the last weeks and having to go on!!  This would help from someone...hands on experience!  Again...I think about your struggle all the time to go another 12 weeks and you are definitely in my prayers!!

[audreywald]

I feel so bad for you. I can only imagine how you must be feeling. At 10 weeks, I cannot let myself think about how much longer I will probably be doing this. How old will I be when I am done? Am I buying myself some quality time? Will I feel as good as I did 7 or so years ago when I am finally done?

I am trying to take it a day at a time; maybe an hour. There are times when I don't feel terrible, I try to grab onto those times for all I am worth.

Hang in there. We are with you.

[Showboat]

I am sorry you are going thru such a horrific time.  I just came out of my phase about 1 week ago, to my surprise.  I felt like you, and wondered if I would ever enjoy life again.  I can only imagine how devestating it is to hear that your tx needs to be extended.  Did your GI give you any indication during tx that this may happen?  ( I had my appt. this morning, and that thought crossed my mind)......that thought froze me in my tracks.  It is something that none of us would want to have to do..I am sorry you need to extend tx...just remember, YOU CAN DO THIS.......my GIPA was sharing positive and hopeful information about SVR rates.....and tx (and extented tx, etc)
I always stare out the window at nothing like you do ....but it can be very meditating and grounding.....
Downthisroad, I was really down and out for a couple of months, feeling pretty depressed, no energy...no amibition....and really feeling like there was no joy.......it finally did pass.  Please let us know what you need to do next.  Many hugs to you and your family.
Peace

[hph5477]

Take a deep breath and relax for awhile.  Good.  Now think about what you would say to someone else in your situation and how you might provide them some encouragement.  Think about the pros and cons of doing the extended tx.  I know that finding out so late in the game is a real shock but just try to take a deep breath and think things through before making a decision.

Luckily for me, my doc has already planted the seed in my mind that I may do an additional 12 wks.  I'm now on 21/48 or 21/60??
It's tough for me to imagine doing the extended time but, on the other hand, I want to give these meds the best chance I can of kicking this dragon's butt.

Good luck with your decision.  We are here with you whenever you need us.

[jonihs]

Does anyone know what would likely happen to an  elderly person (75-80) w/ a chance of an alcoholic liver damage who gets exposed to Hep C ? 1 of my parents may have been exposed by me a couple of years ago b4 I was diagnosed, and it's been on my mind alot lately. Any advice welcome!     Joni

[Revenire]

While I don't know what would happen I can't imagine anyone that age going through treatment. I'd guess if they were tested and positive the best thing they could do is quit drinking, if they haven't already and forget about it?

[Ambush]

I'm so sorry you're feeling so helpless.  It sure does get rough at the end.  I'm 42/48 and feel and look like someone threw me down and beat me with a bat.  Makes it hard to stay tough. Just remember WE understand.  I hope tomorrow brings a better day for you.
ambush :)

[LuckyHaskins]

Hello everyone: I was Dx'd last summer w/ Type 3a and it has taken this long to start the treatment. I am getting my first pegintron injection via the Schering Redipen this Friday and I must say I have some anxiety about it! I looked in on this forum a few months ago and am glad that I found it. I imagine that I will be here quite regularly and want to share in the awesome support you all give to each other, it is truly uplifting to read all of the helpful/inspiring posts.

I have a viral load of over 4,000,000, and my fibrosis rating was 3 out of 4, with the other ratings all being 1's. My enzymes were sgpt 248 and sgot 100 last summer. A couple of weeks ago, they were much lower, one was within normal limits. I don't know why this is, maybe my liver inflames and recedes or something like that. Anyway, I'm a social worker and am worried about how this is going to affect my ability to work. I am considering informing my boss b/c I don't know how bad the sides are going to affect me until it happens, but I certainly don't want to lose my job b/c I'm in treatment.

I wanted to introduce myself and say that I intend to participate in a helpful manner. God bless all of us.

[nolee]

Try to not think too much about it. Focus on the end result. Keep on keeping on, theres is a cure coming 'round the bend soon I firmly believe. I take anti-depprecent called Remoron sol tabs. They not only keep on an even keel but also help with a good nights sleep w/o hangover effects. My heart goes out to you but I can't wait for to announce svr clear in a little while. Us newbies don't know much about all of the sx, but the ability to talk it out with people like you makes us more confident than ever. So if you look at the excellent service you are giving us by posting makes our "unknown" journey even easier. You are an excellent motivator and have helped no telling how many folks. Please know we love you and ALL the help you given everyone (newbies too). Love and Get well soon!
your friend ~Neal~

[honey1616]

Lucky...welcome to the group!!  The sides seem to effect everyone different and you might hold off saying anything to your work until you see how you are going to do.  If you had some sick leave that you could take in beginning to see how you are going to react...that would help!  Good Luck!

[lackalustre]

those last weeks can be real drudgery.  and i only went 28 wks- i feel guilty complaining.  i think i had it in my mind that it would be over and thats all the further i could think.  its hard getting extra time tacked on.    you folks doing 48 or longer are absolute heros.  i went 4 weeks over my alloted time due to a few things and i felt like i was in nowhere land.  i zoned out a lot and still do and thats ok.      we sure do get thru this one day at a time.  downthisroad you are having a special prayer said for you to endure.

[LuckyHaskins]

Thank you, I think that is really good advice! I took off Monday, and don't have to be to work until 11:30 a.m. on Tuesday. So, from Friday at 4:00 p.m. on I guess I'll be seeing how this combo therapy is going to start out. Thanks for taking the time.

Pete

[honey1616]

That will be perfect because you will be ready to go by then definitely.  The first shot for me was the worst and I'm on #8 so if this is the very same case for you...don't get discouraged because alot of people say #1 is the worst.  After that first 1...not bad at all.  I guess its just a big adjustment for your body the first time and of course you may be reporting back that you felt nothing!  I hope that is the case!

[Showboat]

Lucky: Welcome to the community!
All:  Well, I am about to do my 40/48 shot!!!!!!!!  (My palms are getting all sweaty already)  I do not think I will ever get used to the psychological apprehension of "the shot"...(the "plunge" is my hang-up) and really, it is not all that bad. So, I wonder why I have to count to 3 about 20 times.....before I can do the "hit". I am really looking forward to "scratching" off another shot date on my "countdown" list.........Take THAT, you "bleeping" dragon!

[GALLIUM]

long time no post from me but i have been lurking around.
well to make a long story short after fighting for a month
and finaly threating to sue medco health finaly sent the riba.
they had sent the peg-intron 3 weeks ago.
so i'm trying to see the hep np at the university and start treatments on friday.
will be at least 48 weeks and dr. will let me know if we need to extend near the end.
going to be a long haul for me white cell count is 1.4 so will
be neutropienic fast, h&h are good but because of the leukeamia
my platlets are at 80 and havent started treatments yet.
but after fighting with medco health since december to get the meds at long last i can get started. will try and post again friday night and let ya'll know how its going.

[DonL]

Lucky--
Good luck. My sides (I am at 22/48) turned out to be relatively OK and I have been at work almost every day. The mental effects have been the worst for me--forgetful, mentally tire easily, not as sharp--but I am dealing with it as best I can. Here's hoping yours are bearable, too.

As far as telling people, I own the business so that is a little different, but my employees all know and are OK with it. I have had some wierd experiences in telling business clients that I am in tx, so my advice is to be circumspect at work and open with your family and friends. Every situation is different, of course, so make your own decision.

Hang in there, visit us a lot, and remember that rage is a recognized side effect so when we give in to it on the board, just stand back and try not to let any spatter on you. It's going to be a ride, but at least you're not alone.

[LuckyHaskins]

Hey, thanks for the great welcome! I have a question already. I am Rx'd 3 Ribavirin 200 mg. in the a.m. and 4 of them in the p.m. That's 1400 mg. Seems that others on this board are taking a lot less and have problems w/ sides. What do you think about 1400 mg./day???

Thanks,
Pete

[honey1616]

Well I can see the shot thing doesn't get better with time if you are on 40.  LOL  I hate the shot! I take my shot on sunday night and its a very big production getting ready for it and psyching myself to take it!!  I feel stupid as so many people here just take it!  I feel so much like a baby but would do anything to get out of that shot in the stomach no less!!  haha but once you get it in...I love it "Take that"!!!

[Showboat]

I am soooooo glad that I am not the only one that does that....by the time I did my shot tonight, I was drenched in sweat, and my thin and thinning hair was matted to my head...I had to change my T shirt....what a baby I am.....and what a sight to see!!! ahhahahaha....I will be thinking of you on Sundays.....you go girl..........grab it, stab it...and deep six that darn dragon!!!!!