side effects

[Myown]

None to speak of, thank God! I don't feel like there are any meds going through me,,thank God.

This is great so far. The tiny bit of woozy feeling I felt originally, which WAS TINY TINY TINY BIT, nothing scary or anything, is gone and it feels like I am not on tx. I did get a headache 4 hours after the shot and chills, felt like flu,,,,but to those that are planning on tx,,,,,don't even worry about that 'flu feeling' that is mentioned by those treating,,,its nothing that you have never felt before.

I haven't had the flu since i was a child and so when i felt it comming on,,,I turned it to actually think of good memories,,,,I hated school as a child and when i got the flu,,i would be in bed all day with my mother giving me soup and liquids and such. Hard to explain, but I let my imagination take me back to that time and I had a 'safe feeling,' Not to sound 'new age,' which i am not, but just wanted you to know that I just rode the wave, knowing it was going to eventually go away and it did.

The reason I am saying all this is because alot of times we hear how scary treatment is and thus far,,,its a piece of cake,,I am telling those that are afraid,,NOT TO FEAR. Yes sometimes people may have a harder time than others, but sometimes we don't get enough of posts of the positive. We only post when things go wrong sometimes.
Of course I know I have a only been on tx for 4 days, but I AM TELLING YOU, IF I DIDN'T SEE MYSELF TAKE THE INJECTION AND MEDS, I WOUDLN'T EVEN KNOW THEY ARE IN MY BODY.

I hope this helps those who may be fearful. Best wishes to you all.

[Pdilly]

My you did well.  I shiverd so much and felt so rotten that since I have been taking Tylenol.  Now for the most part it does not phase me at all.  Glad you got one under your belt now.  I think right before you do the first one is the hardest one of all.   Just even giving myself the shot was a major deal.

[Myown]

thanks elaine and pdilly.
pdilly,,i know what ya mean about the shivers and stuff, headache to go along with it,,but nothing that we have never felt before in life,,,. I'm glad you're doing fine now.
I guess in time with the riba build up, things may get a little different, but who knows?
That whole thing with the anemia may be a good sign will have me wondering, if I don't get anemic. But it depends I guess, I look at it this way,,if anemia was a sign of svr, everyone who became anemic should have svr'd and unfortunately we haven't always seen that.So who knows,,all i know is I will try my best to NOT get anemic by taking extra B vitamins.

But if the anemia comes, I will be sure to post that too and get opinions and personal experiences to help me out.

thanks again!

[aquarius64]

so glad to hear the good news!!! this gives me a feeling of hope since i'll be starting in a few days. i was worried when i did not see your name posted anywhere recently, i thought the worst. i'll say a prayer for you, and others and i hope you stay feeling good! aquarius

[Myown]

hi bowdeen,
i hope you check in and see this post. i saw a post buried under that you were going to start treatment. it was way down there, so nobody probably saw it,,,,i didn't check again, maybe you did receive an answer,,,but if not,,,you said you were starting tx?
how are you doing? If you see this post, please tell us who you are,,several of us are just beginning treatment also, so there is no need for you to feel alone.

I haven't looked through all the posts yet, so if you have an open thread and answeres already,,,i hope you don't think i'm nuts or blind,,i didn't go through any yet,,,,but if didn't connect yet and you are out there,,let us know. hope you are doing well.

[Cindy10]

I have to agree with Jim about the anemia, it takes a while for it to kick in and when it does (if it does) you will feel differently. I have not had the anemia yet (week 13) and I suspect that is why I have not had such a hard time. Lets hope it stays the same for you every week, but I must say some weeks are better than others. Take care!

[Myown]

"But I do take issue that this discussion group mostly represents those who have had side effects on the more severe side"

hi Jim,
this place IS a life line to me,,,BUT I was 'trying' to point out that we do not have enough posts from people when things are going good. They are important also. That's part of the reason so may people fear treatment,I believe.Thats why I wanted to make sure i posted that my start was fine, 'for the ones waiting to tx.'

Are the sx real that some experience,,of course. Is it good that people post these sx?,,,of course... I'm glad I knew about the shivers and headache. I wasn't told that at the doctors office, but I know about it from here, thank God,,or else I would have thought something was wrong and I was having an adverse experience.

Are the post tx sx important to post?,,,,yes of course,,,but the people that sail through should also post a little more. Rocker the only one who sailed through? I don't know, maybe he was. But anyhow, I'm aware and agree with you, this is only my 4th day and who knows what i have waitng for me,,BUT, I wanted those who haven't treated to know that the shivers and all that are not that bad and yes i did shiver,,but no biggy.

New subject. you mentioned in the other post,no fiber within 3 hours of riba,,,do you feel the psyllium is safe though when enough time in between. I still have the problem with going regularly and this may be crazy, but i was worried that the psyllium would soak up the riba off my intestine walls if any makes it there,or is it totally in the blood stream by then? Of course, nothing scientific, just a crazy thought, but maybe not, who knows,,then again,,not going regularly isn't good either for tx. any thoughts? Took some probiotics, that helped yesterday. I usually do take them and I would imagine that they are ok on tx? They are very good for the immune system.

So thats the story,,hopefully i will sail through,,but who knows?? I am just taking it one day at a time.

thanks for your input as always

[jmjm530]

From Metamucil.com and same should apply to psyillum, the active ingredient in Metamucil.

"Are there any drug interactions or restrictions with Metamucil?

Laxatives, including bulk fibers, may affect how well other medications work. If you are taking a prescription medication by mouth, take Metamucil at least two hours before or two hours after the prescribed medicine.

http://www.metamucil.com/drmetamucil/faqs/index.shtml#faq7
------------------------------------------------------------------
I agree that it's good for people to share whatever tx experience they have be it positive or negative. As to Rocker with almost zero side effects, I imagine he is quite the exception to the any of the rules and btw miss his input very much here. Anyone remmber the web site he said he was going to post at?

As to the "chills, shivers, etc", I think there's a misconception from reading here that shot night is the big bugaboo. While I'm sure it is with some, personally I never needed to take Tylenol or any other meds on shot night and in fact my side effects were generally the mildest for the first four days after the shot and the most difficult days five and six. Of course, everyone is different -- as every week is different, and the type of Peg you're taking may also be a factor. I was taking Pegasys.

All the best,

-- Jim

[Myown]

thanks jim

rocker is over the ronmetcalfe. I joined it to say hi to him and then never posted for some reason. I think I was afraid of getting addicted to another site,(forums are like potatoe chips) but yes I miss Rocker, I wish he would check in here and let us know how he is. He should be finished with tx I would imagine by now.

oh and btw,,,maybe you would have sailed through tx if you didn't do your own 'swedish at home study course.' lol,,right???ha!

[big bloc]

I just finish 48/48 stayed about 80% all the way through TX. Never got a fever,chills, Have not missed one day of work 50HRS week.No rescue drugs. You do here alot of horror stories.I thank god I made it.I hope TX goes easy for you.Have a nice day

[jmjm530]

LOL. Certainly my three weeks of anemic hell may have been kinder on a lower dose of riba, but on the other hand I did get non-detectible at week 6 -- again, few "sail" through treatment, regardles of riba dose,  but let's hope you're one of the lucky ones. As to many of my sides, including post treatment issues, I attribute them primarily to the peg, not the ribavirin, but I've already spoken about that ad nauseum. There is a reason why doctors advise patients to weigh the pro's and con's of treating HCV. If treatment had no con's, then there would be nothing to
weigh, eh :)

All the best,

-- Jim

[orphanedhawk]

I hate to be the spoiler. I'm on shot 5 and the aches and pains are so minor as to be nothing. But I am having problems with food. I can't figure out if I'm hungry or nauseas and I see foods I can't eat and I start crying. My husband made me shrimp over rice and after eating some, it all looked like maggots. I love food! This is driving me nuts! I think I'd kill for a good pizza!

[jmjm530]

Altered taste and food attitudes -- and I mean really weird alterations -- are often reported by those treating. For much of treatment I could only stomach a narrow range of foods that had no similarity to what I ate pre-treatment. Important to address this early-on and experiement with different foods so that you will not lose too much weight, and also so that you have enough food and fat in your stomach when you take your ribavirn. I ate a lot of poached eggs on white toast, applesauce, oatmeal and other comfort foods for awhile. Others report success with different foods. With me, a lot of it was mental and I could not simply "sit down" and eat what was placed in front of me. What I did sometimes was meditate -- often for 30-60 minutes -- on different types of foods until something popped into my mind that motivated me to eat. Occasionally, it might be a TV commercial. One night, having trouble getting in the mood to eat, I saw a commerical for "Red Lobster" or some other Lobster restaurant and ended up calling out for a Lobster dinner :) That got me though that meal. Others report success with protein shakes, fruit and the like. I definitely could have had fruit and protein shakes but had to avoid them because of the reflux. The eating game can be very difficult for some while others seem to have good appetitite and are able to tolerate everything. It's now 9 months post treatment for me and my appetitite and taste sensations are 100% back to what they were before I started treating. It all started coming together in that regard about 3 months post treatment.

All the best,

-- Jim

[Myown]

ya know what?? i often thought about that,,,as far as you getting svr,,,though you are a dare devil to take all that riba,,,who knows if that is what DID cause you to svr?? so i'm happy you walked the edge,,if that is what gave you svr,,but you are one gutsy guy,,,don't think i would have done it,,no let me re-phrase that,,i'd be too chicken to do it. Soooooo happppy that it paid off for you!!!!!!!

[Myown]

so glad to hear those encouraging words. Can I rub your head for luck? ha!
I sure hope I sail through like you! hope we all do!

I pray that you svr for life!! Thanks for sharing your good news with us!

[Myown]

"My husband made me shrimp over rice and after eating some, it all looked like maggots"

lol haha!! thats funny! so you wasted that delicious meal? I would have stopped by, love shrimp.Sounds like you have your husband trained well too. ha! I love men that like to cook once in a while,,,and my husband can cook,,boy he's good. I like his cooking better than mine.

[jmjm530]

Looking back, I don't think I needed all that riba. I say that because I had very close to a two-log drop at week 1 on a normal riba dose (1200 mg/day), but the results of that VL test were not available to me for another 10 days and in the interim I decided to high-dose. On top of that my little high-dose experiment caused me to stop taking riba for close to a week very early-on in tx which is not ideal by any account, although to parpharase my NP, I had so much riba in my system by then that I didn't need a refill for some time ! I do not regret what I did given that I wanted to improve on my pre-tx SVR estimations of around 40% based on genotype, age and histology. Of course I would have done my little riba experiment a little differently, but all really had at that point was a newly published paper from Sweeden and a doctor who allowed me to experiment.

-- Jim

[Myown]

i'm enjoying the honeymoon and focusing on that only,ya know what i mean??,,,don't want to become overwhelmed with what if's,,,i just left all that. The waiting game was worse than anything thus far. hopefully i will not have difficulty, but if i do, at least i know all you guys have lots of advice that can help pull me through.
so then, the interferon is at its height now, so that seems fine,,the riba, yes is scary, but I can't look ahead,,,i am trying to get away from that... I've been doing that my entire life with everything and worried most times for nothing, ya know what i mean,,,theres alot of people that do that, but its always been a fine art with me and i am trying to live in the here and now. Jesus said, 'take no thought for tommorrow, for tommorow will take care of itself.' for some reason, i have always struggled with that.
thanks scott,
see ya later.

[jmjm530]

MO: Jesus said, 'take no thought for tommorrow, for tommorow will take care of itself.'
-----------------
Absolutely, no disrespect, but I doubt if he was ever on combo treatment :)

[Myown]

yes he was,,,read isiah 53,,,,,he carried it all,,,every pain every sickness,,,,

He hung on a cross,, I would rather do tx anyday..

[Maui lover]

Scott is right, the first few weeks are a honeymoon.  My husband and I were able to maintain our long weekend walks for the first couple of weeks of his treatment and he really didn't feel all that badly until about three weeks into it when the anemia hit him hard.  I think there is such a buildup of fear over the 1st shot and how those side effects are just going to kick your butt and then you'll be down for the count for the rest of your treatment.  Even though the first shot can produce the most side effects I think every shot thereafter are the ones that really start to drag you down.  Of course, the Riba has a BIG BIG part in that too.  

My hat is off to each and every one of you who has gone through this.  You are all amazing people.

[willows]

I fear treatment because I have tried once.......it would be very not-grown up of me to sugar coat anything for the sake of anyone here who has not treated.  In fact, it would have done me some good to have heard more descriptive, truthful commentary about IFN...other than what Schering Plough wanted me to know.

Hmmm....a 6 month root canal or IFN?  Hmmmm.......honeymooning with "snakes on crack" or IFN?  Hmmm........wow, give me a minute to think about it.  

EXCUSE ME, I'VE THOUGHT ABOUT IT.  SOC tx suxes.  Hep C suxes too, but in the moment, IFN and riba suxes...at a 40% cure rate.  Best have all the info you can and a few, twisted, bitter perspectives along with it....the pharma's won't tell you...that's for dang sure.

Okay, so I bet I'm in trouble now.  SOC still suxes.

Willow

[Imagine]

I had to laugh just a little bit, ha, not hahaha, at the phrase anemia may be a good sign. I don't it has anything to do with your chance of SVR. I had anemia the last three months of tx and it did not help me. I took aranesp injections once aweek during that period and it helped with the sx associated with anemia. So I would not wonder at all about how well you are fighting the virus if you don't experience anemia. As a matter of fact don't (try) not to think about it at all. Cross that bridge if it comes. Feel good about your lack of sx's to this point and savor your good fortune to this point. I am glad you are doing so well!

[Myown]

aquaris,,,don't sweat it AT ALL!! In a way, i can see why the doctors and nurses tell us to stay off the forums.
I am SO GLAD I FOUND THIS FORUM,,but it is true,,many of the old timers here said "don't listen to just what you read,,alot of people post only when they are having a hard time and when everything is good, they dont think to post".

But even with the chills and headache,,,,no biggy,,yes my head ached,,,,but i know people who get migranes there whole lives and that is what i would call suffering, not this. I just kept   an ice pack on my head and said, 'this too shall pass.'

i can't wait until the second shot because i am in such shock that i didn't feel it, that I can't wait to check it out again.

for a short few years of my early life, I became addicted to alcohol through going to happy hours with my friends. I have a very addictive personality, so I developed a habit early on....NOW THAT IS WHAT YOU CALL A HEADACHE...the hang over the next day...this wasn't no where as bad,,,,it hurt, but no big deal.You can do it!And yes I shivered some as with flu, but no biggy, I expected it, so I didn't worry.

But i am so serious,,,I am sitting here saying to myself,,hope there was nothing wrong with my meds,,,how come i feel like nothing is in me.....WELL aren't we all praying for one another? We are praying for little to no sx and we are receiving just that, so praise the Lord...but lets keep praying,,can't let our guard down.

So aquaris,,don't worry. I'll keep posting how I feel as time goes on. I know I always looked for the new treaters posts so i could feel better about the unknown i was facing, so I will make sure I let you and others know. so don't worry, YOU WILL BE FINE!

[Myown]

Thanks imagine. lol but ya know what i mean?? i've read on site a few times about the anemia being a good sign possibly,,but then again as mentioned, some on forum haven't cleared even with the anemia, so I hope i don't get it.

I feel like i can jump off a mountain right now and not get hurt.lol I just so thrilllllllled that I feel normal,,,the jumpn' off the mountain don't sound normal ha! only kidding about that,,,but ya know what i mean,,,,i had so many bumps in the road that kept me from starting tx,,so now I am so happy to be on it that i think the waiting, though stressful at the time has now actually helped my mental attitude towards tx.

Thanks for your encouragement and I wish you the best!