violent illness from first hepatitis c treatment

[mengel]

First interferon injection for hepatitis c began at 1:30 thursday and by 4:00 was violently sick,i.e, vomiting, diarrhea, chills. This lasted for about 18 hours. Am now OK except for being very tired. Given my job, I can't afford to be sick one day a week, even a weekend day, for the next 6 months. Is this likely to continue

I'm a genome 2, age 37,not overweight,a nondrinker with fairly low viral loads.

[isaiha53]

HEY !! I want to Thank All Of You All !
You All have already been a big help just knowing that there are people out there that know exactly what you're up against and they truly care. I can tell that by i've read since i've been coming here.  I'm getting things in order. I'll be back and again THANX
Joe

[cuteus]

lookup; good luck on Friday, when I took my shots, Pegasys in my case, I only felt a little queasy, after that fine. I even did a Summer Run series, I thought I was doing something wrong since I felt no crushing symptoms, then anemia set in and things changed. Make sure it gets managed when it happens. I can't say what symptoms the other interferon gives.

Isaiah; good luck in your decission. I am a single mom, also 50+, and was able to "work" (deskjob) during tx. missed one day or so. I pretty much forgot how I felt during tx, which ended 6 mo ago. That is a blessing, I guess. and the fact that HCV seems to be gone. That alone makes it worthy.

I was a 1a with mild liver damage.

[Tallblonde]

I just wanted to say hi and welcome you both to the board.  I hope you'll find lots of good advice, good humor, and good support here.   Good luck, LookUpSeeBlue, as you embark on your treatment journey this week.  Don't hesitate to write if you're scared and need a cyber-hand to hold onto.  

Susan

[isaiha53]

Hello Again,
Does everyone get (P.S.T)?  That's Pre Treatment Stress,I'got it bad today,just having one big pity party.
I know my Father is going to get me through this, but today the flesh kicked in .
I'm working on getting all my ducks in a row so i can get started and git-r-done.
                Thanx,
                     Joe

[lookupseeblue]

getting ready to start treatment peg an ribo this friday scared to death of sides

[LvdByGod]

hummm, i like your screen name...welcome here!!! sorry you have to go through all this stuff. i pray you will kill that virus this coming fall on the tx.

you may want to post further up on the recent days post on this forum cause some folks don't read down this far...hope to hear from you again soon.

sandi

[isaiha53]

Hello & Thank y'all for this forum. I'm a 58 yr young single dad so i'm putting off starting treatment [combo] because i stand to miss any work while it warm out. I'm a self employed handyman, and i don't work that much
It's really nice to find a place where people can help.
The day i found out that they wanted me to start interferon i was scared to death because of all the horror stories i had heard
i was on the internet for 3 days, site to site and then i found this one I didn't have to go any farther
THANX

[LvdByGod!]

thanks biophil, that was sweet of you to say. yep the side effects really stink but they are still better than the problems with the endstage liver disease.

let's see alot of folks get some rashes that itch. some have thyroid problems and require meds to regulate it and for some folks this lasts even after getting off treatment for hepc. but if you clear the hepc it will be well worth it in most cases because for most folks it can be regulated with meds after that. alot of folks get anemia which makes you feel tired all the time and sometimes you need meds to make your red blood cells increase (procrit) so your anemia isn't as bad...sometimes you get aches and pains in the joints and for this we take pain meds...your appatite is no good on tx and you can loose weight...some folks get mouth sores...some folks loose hair but it grows back after treatment...some folks get depression but AD's seem to help. some get blurry vision and you must keep an eye on this  (no pun intended) so the dr can monitor it and warn you of any serious developments.  but most of the time you just feel lowsy. a general crudy feeling while on treatment and kind of crabby and tense, for this we use zanax.

i think these are the main side effects. it sounds bad but it is still not nearly as bad as what happens when the liver fails...so you gotta remember that and fight hard to get rid of the virus...

please keep in mind not everyone gets everything and not everything lasts through the whole treatment and most things if not all get better when you are off the meds. also most things you can feel better with meds for the side effects...

the most serious things to be concerned with are the thyroid and the eye problems...these can remain after treatment is done so you must keep monitoring these while on treatment. but all don't even get those...

it is serious medicine and must be taken with care and diligence. but it can help you avoid the horrible end stage liver disease that happens when the liver fails which is so scarey that it makes treatment look like a piece of cake really.

my mom died of this and it is very scarey and lots of things happen to your body that can not be controlled or helped in the end...please do a search on "endstage liver disease complications" and i assure you that the side effect list for treatment will look so much better to you.

for me endstage is to be avoided at all costs...i will do anything to keep myself from this possible outcome if i have a chance...which for now i do. i have stage/grade 3-4 bridging...which is the beginning of cirhosis...but thank God i am still compensated for now...meaning my liver is still working for now...i hope to be clear this time next year and prayerfully revearsing the liver damage...but even if i don't clear i'm sure i will be slowing down the liver damage...which gives me more time for new treatments to come out.

look at hep c treatment as being like chemotheropy...no one wants it but it's the only hope for some folks...

sorry phil you must face this garbage and make these horrible decisions...i really am and i pray for you to clear so you can have the healthiest life possible after treatment...

sandi

[BIOPHIL]

Thank you both (and the others who have given me advice on these boards). I will download your advice and keep it in my files on this nightmare.
now what about the Side efects? People have stated that they suffered a great deal from the side efects including big Thyroid problems AMONG OTHER THINGS. what is the story with that.What are the possible side effects?  i dont mind hardship While I am in treatment, but I would really hate if there were permanent long term side efects from these drugs.
I guess if there are no other drugs available to treat this, I may be left with no choice anyway. And "no choice" is something I *really* hate.

[BIOPHIL]

The post above is directed to you too, including my thanks.

[Lynne5477]

Same sx for me with the first shot; however, it didn't last near that long, but the migraine continued for about 3 days.
My dr told me to take a tylonel about 1 hr before the shot and then every 4 hrs after for that day.  When I started the bad chills, I realized I had forgotten the tylenol (didn't think I needed it).  Once I took it, the chills went away in about 1/2 hr.

My second week wasn't so great either but not quite as bad.....but still got the migraine which I think contributed to some of the vomiting, etc.  Once I got that under control, my sides were not too bad.  

Always felt fatigued and couldn't do as much as before but I got through it.  Did 48 wks and my 6-mo PCR was clear.

Good luck to you.  Please hang in there a few wks b/c I think things will improve for you.

[LvdByGod!]

hi biophil, yes please post your labs that will be good to look at and perhaps we can comment a bit.

but what you really need is a biopsy to detirmin exactly what condition your liver is in...have you had one yet? i'm sorry if you already told us this but, my memory is shot...if you are over stage/grade 1 then you really should treat with peg interferon/ribaviron as soon as possible for the best chances to clear the disease. if you do have cirhosis you need to be in a big hurry to start treatment and may want to do the 48 weeks for extra fibrosis repair and a better chance to clear...

i am 3a too. and there are several here with that type right now. so you will be in good company.

to answer your question about cirhosis with type 3a...and how to detirmin treatment times you must concider a few things.

those with cirhosis have a harder time clearing so you may wish to do the 48 weeks to be thourough. those who are older have a harder time clearing. those who have fatty liver have a harder time clearing (many 3s get fatty liver). if you are overwieght you may have a harder time clearing cause those with a high BMI may have a harder time clearing.

so size up your situation up and give yourself the best chances...if that means extending to 48 weeks do it with zeal and perserverance! you may need to find a good agressive dr to help you extend and increase your odds of clearing...some drs won't do anything extra...so stay away from them and stay away from any drs who believe in lowering doses to battle side effects instead of using meds to battle them. lowering doses durring treatment lowers the chances of sustained viral responce.
also make sure your dr orders you an evr test (early viral responce) most check this at 12 weeks but you may be able to get one at 4 weeks...ya know if you completely clear by 4 weeks you may be able to get away with only the 24 weeks...but if i were in your shoes i would be planning to extend treatment beyond the 24 weeks, at least for a few extra months if not longer just to give myself the best shot of getting it the first time...

i pray you get some good news from your biopsy and come here for support durring your treatment...take care biophil...

sandi

[cuteus]

this is a post you should read:: 3 yrs SVR - new-sojourn: 05/12/2005.   NS has not been around much, she is probably out there enjoying life to the most. SHe has told her experience enough so that we might carry it to others with questions. She was end stage, and bleeding from varices, please read it.  also to read, if you have not done so, is the thread on fibrosis reversal,  many studies have been mentioned there, and you might want to read and print so that you can show your GI that you are informed and mean business by getting involved.
You have made good changes in your lifestyle and might have bought you the time you need to get rid of this pest.
Pegylated interferon and ribavirin is the accepted, most efficient way to erradicate hcv at the  moment.
When I saw Dr Palmer, she has offices in Plainview and Ronkonkoma in LI, she was direct and blunt, but she knows her business, you might want to read her book at liverdisease.com, I think.  She left it up to me to treat or not and the choice of pegs.  I had read that pegasys might be easier so I asked for that. I was a stage 1 and could have time to wait.  Your damage seems more advanced.
A member here, Califia, is doing both the treatment and an herbal protocol, she seems to be a little under the weather with anemia, but she has posted what she takes in some threads down.
I can't  believe they are not giving you an emergency appointment, after having had a bleeding. You might want to start looking for other GIs.  I had three of them, from the time of diagnosis.
REad and print, they will take you seriously.  If they don't like your input, change drs, there are  many competent ones in the NYC area.

[cuteus]

this is a post you should read:: 3 yrs SVR - new-sojourn: 05/12/2005.   NS has not been around much, she is probably out there enjoying life to the most. SHe has told her experience enough so that we might carry it to others with questions. She was end stage, and bleeding from varices, please read it.  also to read, if you have not done so, is the thread on fibrosis reversal,  many studies have been mentioned there, and you might want to read and print so that you can show your GI that you are informed and mean business by getting involved.
You have made good changes in your lifestyle and might have bought you the time you need to get rid of this pest.
Pegylated interferon and ribavirin is the accepted, most efficient way to erradicate hcv at the  moment.
When I saw Dr Palmer, she has offices in Plainview and Ronkonkoma in LI, she was direct and blunt, but she knows her business, you might want to read her book at liverdisease.com, I think.  She left it up to me to treat or not and the choice of pegs.  I had read that pegasys might be easier so I asked for that. I was a stage 1 and could have time to wait.  Your damage seems more advanced.
A member here, Califia, is doing both the treatment and an herbal protocol, she seems to be a little under the weather with anemia, but she has posted what she takes in some threads down.
I can't  believe they are not giving you an emergency appointment, after having had a bleeding. You might want to start looking for other GIs.  I had three of them, from the time of diagnosis.
REad and print, they will take seriously .

[BIOPHIL]

Do they treat people with hepatitis c with Interferon-peg-whatever?
I am type 3a with cirrhosis, I don know how far advanced but i will try to organize to post a copy of my bloods cas one of you kindly requested that i do.
I cant afford to not work either, but somedays i am knoked out and Unable to work anyway.

the response rate for 3-a is better than for 1 genotype but is that true for people with cirrhosis as well?
Now i am in the middle of one of my symtoms as it is 1:30 here in NYC.

[cc2]

It seems you got hit with the mack truck!  Usually your first shot is the worst and sometimes the 2nd, but the flu sides get better, so hang in!  Think positive, you can do this...

[LvdByGod!]

you know that sounds pretty typical (fevor and flulike symptoms)for a first shot reaction or even the second shot reaction for some folks but it shouldn't keep up that way...i have never heard of anyone's side effects keeping up like that for the long haul...let your dr know if they continue in a violent way.

also, be sure to take some dr approved pain meds before your next shot and the night of your shot or when it gets bad for pain and fevor. this will really help. take your pills with a meal to help with nausea. you may also be able to get meds for nausea, just make sure they are liver friendly some are not.

my sides are worse on the 2nd night after shot...usually achey feelings with some pain in joints etc...it is very similar to a pms body aches minus the stomach cramps...but it has never been as bad as my first couple shots (which were very flulike with fevor of 103* ferinhiet).  i have been on meds for over a year and the flu symptoms have never happened again for me. it will take some time to get used to the sides and how to deal with them. just don't let your dr lower your dose which is really bad for your odds of clearing, unless it turns out to be an allergic reaction or something deadly, which it usually is not.

AD's help for depression and watch for anemia,ask for procrit if anemia gets bad... the dr should be providing you with side effect meds as you inform him of your sides. make sure you drink plenty of fluids and get plenty of rest too...you can come here for support and get others opinions on what helps them for sides.

this shouldn't last but the first few shots at most. hope you'll be feeling better sooner than that though. probably in a couple days you will be better. your next shot should be noticably better.



hope this helps, sandi

[cuteus]

which interferon are you using? Most folks who have used both pegintron and pegasys, state that Pegasys is easier on the sides. I did not get very ill with the shots, but others here have and they also stated that it gets better as your body gets used to it.  If need be, you could ask to be switched to an easier peg or for a good pain medication until you stabilized. for me, vicoprofen took care of the nausea, chills and aches.