Quit treatment after a week

I started Peg Intron  / Riba last Saturday and I've been sick as a dog right up until last night.   The shot is the LEAST of it.  I could handle the 101 fever, the chills, aches, etc.  It was the rest of the week that was absolutely monstrous.   The weakness and nausea were huge for me.  But the nastiest thing was the absolute lack of enjoyment in ANYTHING.  It was like a cacoon was spun around me.  Working on this **** is a joke.  I guess having the structure is good, providing they don't mind paying me for doing NOTHING.   The stars are somewhat aligned for my treatment too -- Male, I'm 40, genotype 2, HAI 3/12  mild fibrosis (2/6).   I only need to do 6 months.    I stand in awe of people who do this course for a year.  I'm not certain what I'm going to do.  I haven't even told my doctor.  I just refuse to put myself through this right now.   I'm really hurting emotionally, truly disappointed in myself.  I caved in huge on this one, a full stride run away.    I'm going to have to dig deep and do some soul searching.   Yes, I could start back up.  I missed last night's and this AMs RIBA dose.
I'm supposed to do my shot on Friday  9:30PM.  

Oh boy.

[carolhab]

Hi there - I am so sorry you had a rough first week.... I, too had a rough time of it (though not quite so bad as you)...  You made a huge brave decision to go for treatment, congrats... I would definitely start back up, give it time... I would call the doc right away, there are meds that can help with some of the side effects, and help you through the beginning.. I am starting week 7, and I am feeling MUCH better...
Check out this guide I have posted before which helped me:
http://www.hepcsurvivalguide.org/
and, you will get lots of encouragement from this forum - there lots of tips in these strings about how to deal - like someone told me - keep your eye on the prize - I have been told that even if we don't completely clear, this tx helps slow down progression... so bluepeng, best of luck to you!!!!!
sammy

[new-sojourn]

I'm w/the rev on this one-big surprise!  Suck it up--you're a 2 and have almost certain odds in your favor.

If you think tx is hard, try living your life w/ a severly damaged liver,

I was a 2b, mid 50's, infected in 1967 vis transfusion and cl'd the virus by day 18.  the reaction you are describing maybe the virus dying off right now.  You could be 2 shots away from an EVR and 23 shots away from a disease free life.

I'll tell you, @ the end before tx, I felt much worse w/no relief in sight.  So, don't do tx and just wait for your liver to rot, your mind and memory go, your emotions are black and the depression makes death look warm and welcoming.

Little kids, old people, dying people all sucked it up.

B/now you have a glimpse of your disease ridden life w/o tx.

[honey1616]

Blue,,,My first week was the worst also and I had thought about quitting myself that week but kept on and it did get better.  I just now completed 52 weeks and done!  It is tough at times but honestly,,,,the first week is the real kicker!  Start back on your pills,,,,you can do this.  You are a 2!! You will beat it and in 6 months,,,you will get on with your life!  The prize is right there for you to take,,,,I agree with Rev and New,,,,Suck it up,,,Just Do It!  Come here often and *****,,,We know what its like,,,We will listen!

[snook_man]

Man...... I can relate to you on this one.
I'm 27 years old, geno 1a.. Last May I did my first shot of peg/riba. By the sixth day, I lost 10 lbs, I was also in a caccoon, and emotional broken. I threw up for days, let alone could not stop freaking out!!I was pulled off tx immediately..
Today, I'm on week 14/48, and my virus is undetectable.. I tried it again. This time I was ready, and it hasn't slowed me down at all. Sure I feel it, but I refuse to give into it.
The first week or two was the worst, but after awhile your body gets use to the drugs. I know how rough and bleek the finish line seems, but YOU have to keep fighting. You made the decision to attempt tx, so stop what your doing and jump back into it.. It is not too late.

[bluepeng]

I am a f*ck*up.  I did it.  I went upstairs and gave myseld the redipen injection.  I was so anxious I only gave myself like 0.4 of the 0.5 dose.  I pulled the Pen out and I realized there was still a little more to go.  DAMN DAMN DAMN.  Screw it.  Screw it.  I gave myself most of it.  I need to take my time.  My wife should have been there.  she was there for the first.  I'll take my two RIba tonight at 6PM.  Why do it if you're not gonna do it right?  What's wrong with me!!

I have to say, I don't have many people to lean on me like you all did.  I'm am *truly* grateful for your wisdom.  You can't run from your problems -- that's easy.  

I will *****.  And I'll keep bitching, maybe that's what I need to do.  

Now, about this dose screw up.  Has anybody ever heard of this happening.   I don't know, maybe I'll just have to do another week of the treatment.  

Damn.  Well, I'll probably be feeling something in an hour or two.  Got a lot of snow coming too.  

Peng.

[cuteus]

not everybody will need ADs to get through tx. they are not a magic pill for everything you go through during tx.  
Some of the emotional reactions we go through might be due to the meds, but  a  lot of them, if not most, might be a normal reaction to feeling physically ill. I don't know many people who feel like partying when they feel ill all the time, day in and day out.
the tx is not fun,  you are not in the happiest place on Earth when you treat. If you were, there would be a line of people "dying" to get in.
The tx is doable, and is temporary.
The reward is to be HCV free.
If one brand of interferon makes you severely ill, perhaps switching, rather than stopping, might be a better option.

[Lynne5477]

You can do it.  I, too, was sick the first 2 wks and didn't think I could do the tx.  However, I gave it one more week and, guess what, the 3rd week was nothing compared to the first two.
I almost felt human by then.

My first 10-12 wks were really the hardest and after that things seemed to settle down except for the extreme fatigue.  Guess it just took my body that long to get used to the meds.

Anyway, I completed 48 wks last September and so far, still clear.  I'll do my 6-month post-tx PCR in mid-March.

Good luck to you.  And hang in there.  Come back to this forum anytime you have questions or need encouragement.

[harley dude]

I thought I was a tuff guy and would be able to do this tx stuff with no problems (WRONG)- for the first 6 weeks I was in bed, crawled to the couch, then back in bed- took about 7 weeks off of work until one day I just started feeling better, went back to work and did fine for the next 40 weeks (not really fine, but was able to deal with it with minimal sides. I was 2b, did 48 weeks pegasys+copegus- cleared 6 months post tx, and have been doing fine ever since. I did do AD's during tx and it really helped, also did xanax on shot night to ease the fear. You really shouldn't just give up, you'll only get worse and the longer you wait the tougher it will be to clear this dreaded virus. Good Luck and I hope you'll start back up- you'll be happy you did when all said and done. JUST-DO-IT- See Ya, Harley

[DebbieDo]

Hang with it....start right backd up....
The first few weeks are the hardest, its really doable....
I finished 48 wks 2 months ago and i worked all the way through it......just tell yourself that you can do this.....
You have much better chance of beating this thing than i had.....Im a 1b......I gave it my all, and believe me it was hell.  When its over its hard to believe how you really felt.  I work with seniors all day also work part- time as  an activity director for a retirement home.  Not the most fun  thing to do on tx, but, i did it....and so can you.....Think hard about this cause the dragon is running loose in your body creating all kinds of problems......Deb

[Laika]

I am just a newbie myself, trying to get to the point of treating (drs apt next week, know more then).  I KNOW what a baby I am (always had radical ups & downs, have to look out for anxiety & depression) and figure on starting anti depressants probably a little before I start to treat.  I hate AD's, but figure they might keep me from having the same experience Blue has and screwing up treatment.  I thought it was interesting that none of the oldtimers suggested that to you.  Oldtimers:  is there anything wrong with this suggestion?  Did anyone out there start AD's before treatment, and if so, do they feel like it helped in the beginning?  I think I've read here that the AD's helped some people just get through the long months of hell, but does it help at all in the beginning?

[scruffy]

You injected 80 percent of the dose and that is enough-just do better next time-no sweat! Frank

[cao]

I started on ADs and I think it made a difference, but that's just my personal opinion.  I did have to up the dose about halfway into treatment, but that made a difference too.  I've found, and this is just me, that the physical sides have been FAR more manageable than the mental ones (exhaution, depression, anxiety, etc).  My feeling is that anything that helps you get through this is a good thing.

[DebbieDo]

NO AD's here during tx.....I wanted to  try and get through this without them and i did.......BUT, yes, if you are depressed now by all means start before TX.......

[whoaisme]

I am so sorry that you are experiencing such a difficult time. It is a very difficult and trying time for everyone beginning treatment. Many people are overcome with the emotional and physical reaction to treatment. Please hang in there, give it some time, talk to your doctor,they are able to treat every symptom, emotional and physical. Come to this board, people here will support you. You can do this, and you don't have to do it alone.

[ral]

Hey Blue

You can do it and you are not screwed up, the stuff we got to put in our bodies ain't fun but neither is dying of liver cancer so I chose to treat. I did 72 wks full dose no missed riba or interferon. The first 8 wks were very tough and I got very sick with a cold on top of it. I thought it was over for me and I like Harley Dude think I am am a tough guy I fought nationally in Tae kwon do. Also look at the women here that give birth and how tough they are and the pain they go thru but man when it comes to interferon you got to look inside real deep like you said. Make your mind up and believe me you can do it with the help from the people on this site.

What is great about this place we all come from different backgrounds and histories but we stick together and share information freely and openly. I did not clear but I will try again soon. I am 56 yr old male (57 in Feburary) with 1b and stage 3-4 closer to 4. You are younger and have a easier one to beat so hang tough and let us help you get thru it. ***** and moan that is what we are here for.

GOD BLESS

Bob L

[snook_man]

I did do AD's from the start. My first attempt back in May, I started crying uncontrollably. I am not sure it was from the meds itself, or just the overwhelming weight of the "situation", and diagnoses. I was shell shocked to say the least.

I took Effexor Xr for a few months before restarting my current tx. I feel good overall, but almost no need for the AD's. I have stopped taking without telling my Dr, but actualy just cut back. I take one like every other, sometimes third day.
Honestly, I think if you set your mind to something, you can overcome!! I know it is hard to say, but doable. My first attempt at tx backfired cause I had this awful picture of tx in my mind and thought I might as well die. Well, it isn't all that awful, and I sure as hell do not want to die.
What you see on the internet is but a few that are on these drugs.. Only the ones that need guidance, or support. Alot of the people of tx go about their everyday lives uneffected.

"These drugs will only effect YOU, if YOU let them".. Thats my motto, and I'm stickin to it!!

[Laika]

Anyone who has taken AD's knows they are no magic pill for anything.  The best you can hope for is they might help, but they can have annoying side effects of their own -- they're sort of a last resort.  Since we don't know you, we don't know if you have loving supportive people around you or not, whether you might be at some difficult crossroads of life besides treatment or not, whether you are a glass-half-full kind of guy or not. When you become depressed (and everyone who treats evidently experiences some degree of depression, like Cuteus said, a natural reaction to injecting these nasty drugs), it can be difficult to know when you've crossed the line to a point where you might need to take AD's.  The old "be tough you can do it" seems a little hollow when you find yourself crying all the time or have thoughts that terrify you.  This is what has worked for me when I realize I'm losing control:  that it's easier to be strong with a prescription for AD's in your drawer.  I don't want to take them--but it makes it easier to get through a tough day/week knowing that option is there, just in case.  Doctors can be pretty inaccessable these days, and like I said, it can be difficult when you feel like **** all the time to figure out when you've crossed a line into needing more help--so having the script doesn't hurt.  You can always toss it when it turns out you were really able to make it through the hard time without it.  Sometimes I think AD's I've taken in the past had a placebo effect for me because I took them, told myself they were working, everything was going to be fine--and then quit taking them by the time they were actually supposed to start kicking in!  (I think it's about 3 wks before they're supposed to actually "work", although I can feel them within a day or 2, don't know why about that...)

So whatever you have to do to stay on treatment and attain SVR--that's the prize, keep your eye on it...  If taking AD's makes the difference, go for it.  If you don't need them, good for you.  But you're not a wimp if you need them, everybody's different.  I say this not as a person who has treated, but as a person who has lived most of her life with all its experiences and has experience with AD's.

[Laika]

Snook thanks for contributing your experiences.  It seems like everyone who was posting was saying "keep a stiff upper lip!  You don't need that stuff!", and sure it's great to have encouragement to be strong, but it can be more complicated than that.  So thanks for explaining how AD's were useful to you, in your particular circumstance.

I do disagree with your statement:  "What you see on the internet is but a few that are on these drugs.. Only the ones that need guidance, or support. Alot of the people on tx go about their everyday lives uneffected."

Everyone is affected.  Some people tough it out, some people freak out and stop treatment.  Some people are so terrified of treatment they never start.  They don't post here, so we don't know what they do.

[nanniegea]

Please don't stop treating!!!  I found that having a painkiller has helped a lot. I am on methadone and if it were not for that I couldn't do this. Ask your doc for whatever you think you need to get through. I did not go on meth because of drugs...it was for pain from other problems but the stigma is just the same no matter what the reason you take it is..but that's another rant. You have every chance to rid yourself of this bug and you CAN do it. Take care of yourself, drink tons of water and bug the doc for anything you think you need to get through this time...good luck and God bless.

[cuteus]

well said, a placebo is a powerful healer sometimes, so whatever gets us through the torture, except murder...

be well

[snook_man]

Ahh, you just could not resist publicly displaying all that built up affection for me again.. It's OK, I still love you Bro'..

Indy wouldn't respond, so you take me on? Ha HA HA!!!!

[miked]

Hang in there and be strong for yourself.  You can do this.

I screwed up around shot 3 the same way you did and about 1/5th of it poured out on my skin (left a nasty rash). Many people have said to leave the RediPen in for 30-60 seconds after injecting and push very firm on the plunger.

The first 3-4 weeks were the most intense because I felt like I was going nuts.  Went on anti-depressants which helped significantly.  Now 8 months into treatment its is different....not as intense but it seems to really wear me down.  Additionally I'm getting goofy symptoms like skin rashes, my fingers split very easily, diarreha, etc.

I'm looking at daily Infergen and may be back here soon with similar complaints.  We're all human and this is rough stuff.

[ribaribariba]

really sympathise.  had my third shot 3 days ago and discovered that all my blood counts are in shambles.  i can cope with the headaches, fatigue, eye ache and general illness but the sight of those blood counts scared me.  on the positive side my AST and ALT are mid range for the first time - they were 3x over at diagnosis in November.  i stopped drinking they dropped to double.  now they are 27 and 33.  but and its a big but - WBC down to 3.3 g/Dl, Hg down from 12.6 to 9.9, platelets down from 216,000 at diagnosis to a miserable 96,000.  my question is - how low can i go on all these  - i have to go back for 4th blood test and shot on tuesday - need some info.  i can't tell you how horrible it is to see all your bloodwork underlined as below range.  i mean i was healthier with the virus, which incidentally i have had for roughly 20 years and is type 1 or 4 so i'm looking at 48 weeks.  incidentally first two shots were Peg İntron 2b Shering as Pegasys not available here and only 80ml but the third and consecutive shots will be 100 ml.  THe first two i had no injection site reaction, but the third gave me a red patch and lousy headaches.   HELP!  What do i do if my blood counts are still falling?

[TnHepGuy_]

Your blood counts are guaranteed to go down - to one extent or another - as a result of the tx. So seeing them drop early on is the norm.

It's definitely good news that your LFT's have normalized so quickly. As far as your WBC, it's still doing very well. Most docs don't intervene with Neupogen until it's around 1.5. Your hemoglobin has dropped rather low and your doctor should have you on Procrit starting right away. It can take a few weeks to begin to boost the results, so waiting longer would make no sense. The sooner you get on it the better. Your platelets are low, but by no means low enough yet to become seriously concerned. Some doctors will let it go all the way down to 30,000 before lowering or halting the interferon.

You should contact your doctor's office and discuss getting on the Procrit right away. Also, ask them at what blood-count level will they start you on Neupogen (should that ever become needed). And ask them at what platelet level do they become concerned enough to cut or skip interferon dosage. Then, call up your pharamacy and ask them how soon they would be able to get you Procrit. It's not an off-the-shelf item and might very well have to be ordered by them from somewhere else. Next, call your insurance company and make sure that these durgs are covered - and at what amount of coverage. And while you are at it, you might as well ask both of them the same type questions about Neupogen.

The more you can get done right away, the sooner you will get these meds and the better your blood counts (and you) will respond. Having your hemoglobin so low will make you feel like ****. Anemia is a very lousy sx of the riba. Start the Procrit for it as soon as possible.


Best to you.


TnHepGuy

[KICKED]

The first injection for me was I thought the death of me.  I seen God 5 times that night. (Figure of speech)  But I did scare my daughter.  rolled up in a ball and my daughter and husband struggled to straighten me out and cover me with blankets.  Kicked them off in no time.  Never quit but came close a few times. I can tolorate it now and first test came back undetectable.  Keep plugging.