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Avatar universal

Please would everyone list sx.

Hi Guys I am going to post sx, because I was asked too, with no icing on the cake. I wish everyone here would add to this list, it is not intended to Scare anyone...I made it thru 48 wks. And so can you!

Well, when I first started tx. I did a few shots and a month passed and I thought ...gee what was all the hoopla? This is easy! Then the 3rd month it hit me! And it hit hard!!! We had been outta work because of snow and I had 5 days to rest. Well I wasn't able to go back to work! It was like all the sx hit at once. I was throwing up, running a fever, passing out, and to say the least...I HAD FATIGUE!!!! They said it would feel like you had the flu.......BULL %&*! I felt like I was freakin' dying.

MY body hurt so bad!!!!! I could barely get myself to the doctor appointments. And those were the only days I got dressed. About the 4th month my hair started falling out. So I like some others said...stopped washing it. I would go 2 wks w/o washing my hair..heck sometimes I would barely brush "at it". And bathing was very limited too. When I told my liver doctor I was about to start drinking again to kill the pain...he took notice and started me on pain pills.

I cannot stress the days I laid in the sofa (at home alone) and cried like a baby. My 75 and 80 yr old neighbors were cutting my grass and cooking for me and my husband who was working 10 hr. days. I never would have made it w/o them. I hated the fact that I no longer had any desire to have sex or for that reason be around any ppl at all. _continued-
33 Responses
Avatar universal
-continued- Even though I still loved my family I dreaded any visits from anyone! I really prayed for God to come and take me home! Oh I had riba rage like crazy. I am the one who slapped my new husband of less than a yr., and broke his tooth. He was the one who kept telling me, it's not you, it's the meds. The brain fog was awful too. I would try to make sentences and have to hesitate to really search my brain for the word I was looking for! My skin got dry and my mouth was full of white sores that hurt so bad. I would get upper resp. infections, one after another, my periods became irregular and some months none @ all. I looked and felt like, and there's no nice way of saying it, HELL. I stayed in my Bible for comfort and I came to this forum as soon as my husband would get in from work...(I use his laptop). I had a terrible cough and I had a horrible time with getting out of breathe. I would start to say a sentence and would have to gasp for air, to finish talking. My voice was very raspy??(SPELLING?)

I'm sure I have left out some sx. but these were the worst. The AD's helped some, I also took klonapine for my nerves, something to help me sleep(me @ sleep aids don't get along). I would stay up many, many nites all nite long and read on this forum and read the archives. I hated loud noise and bright lights! And I was so tired of wearing pads because of the cough, I was a pee-pee pants.

The thought of suicide crossed my mind many times, but being a Christian, I knew better than to act on feelings. I can't even start to remember all the meds we tried and all the ones that didn't work! You'll find ppl can be so wonderful, but then some who are supposed to help...like some of the witch nurses could be so mean. I had trouble like many others...platelets dropped to 9 at one time and stayed there for about 3 months.

And then there were the outside...family problems...my daughter was driving me crazy. I found out during tx my daughter and g.daughter were living in a house where drugs were being sold. I have my 10 yr old g.daughter w/ me now. My daughter seems to be doing better. She has move out of the drug house and looked quite "clean" yesterday when I took her daughter to see her. We also had to take in my husband's 16yr old step son. But he messed up here with bringing pot into the house so he is gone now. My dad is bi-polar and that was hard during tx. He also had 3 mini strokes. To say the least it is as hard on my Mother as it is on my Dad.

Well I hope this has helped for the ones who asked me to do this. I hope everyone else will give their in-put and maybe add some things I forgot.

I am 4 months post tx today and waiting on my first blood test results, done on Thurs. since I have finished tx. I was first diagnoised with fibromalgia (after finishing tx.) but since have been told my problems are tissue related. I will find out more about this on the 16th of this month and I will let ya'll know.

I want to thank EVERYBODY here for being so kind and listening to me whine sometimes!!! lol Newbies, IT IS ALLOWED< whinning that is. I love each and everyone of you and I pray nite and day for us all. Please remember don't let the little things take up space in your mind!!! Be kind to one another and never hurt anyone's feelings, enough to make them leave this forum. I STILL MISS RINGADING!!!!! She made me laugh and that's the best medicine!!! So gang hang in there and remember...NEVER QUIT !!!
I almost did many times! I love you all, Sincerely, Cindee
Avatar universal
Awww There you are...you are skipping around the board to day haha  I can not believe on how bad you had it..Man...Its so scary not knowing from month to month on how you are going to feel and I'm only at #8...whew! Long, long ways to go.  You must be some kind of strong lady to continue...I don't know if I wouldn't have just thrown in the towel mid way!  You are the greatest!
Avatar universal
First 2 wks sx were the worst for me.....nausea, headaches (migraines), vomiting, loss of appetite.  Had to make myself eat for about the first 6-7 wks so I didn't lose too much weight.  Still had the headaches and got a prescription for Imitrex about wk 8 which has helped tremendously.  Just did 21/48 this past Friday and have felt pretty good once I got past the first 2 months.  I do get fatigued very easily...have to stop and rest frequently when getting any form of exercise.  I do walk 2.5 miles 3x wk and also am now starting to ride my bike a little with the nicer spring weather coming but it's a very slow and short ride compared to pre-tx.

Hope everyone else is doing well and having very mild sx.
Avatar universal
Cindee,

Everything you've listed as far as symptoms I've experienced too.
I haven't been able to work for the past 2-1/2 years.  I've had to deal with spiritual problems as a result of treatment, too.  It's very disconcerting when as a Christian, you've can't feel God's presence, this has happened to me every time I've treated.  I've had a lot of lung problems, weight loss, mood swings, hair loss+it grows back in sticking straight up!  Personally speaking, my husband does not live with me and my son is seriously mentally ill so he lives in the state hospital.  So, basically, I'm alone quite a bit of the time.  So what I'm saying is that I know how hard it is, keep on having faith in Jesus and he'll carry you through the rough parts.
Susan400
Avatar universal
Your posting made me cry.....I cry alot now for no apparent reason......I can watch a game show and someone wins, i cry.....someone dies in a movie and i cry.......i think about being alone and i cry.......i use to be a strong person.....but, i have all these emotional things happening to me...I will do #11/48 Monday......I have had restless nights, horrid dreams, you could never imagine.  My left nostril is so sore.  My nose is so dry from the meds. I use a humidifer at night, and maybe that is the problem for the restless nights, but, i tried to sleep without it  only to find the nose is terribly dry.  The fatigue is terrible.  I still work, i do homecare for seniors and im a part time activity director in a retirement home.  I move like a robot.  I get by day by day.  I get out of breath.  My hemmogloblin (wbc) dropped some last month to 10.6 i feel the same as i did last month.i hope it hasnt dropped more.  GI appt on the 22nd.....My hair is thin, and i have noticed some in the drain, i wash my hair every third day, otherwise it looks terrible. I am gaining weight, doctor said i would loose.....he lied...... Its been a tough battle thus far.....i dont post alot, but, im here daily reading and getting inspired by all of you....Im a 1b......so, i have faith, or i would have never put myself through this, as i was very well before TX.......God Bless everyone who comes here for whatever reason.  I feel i might miss some very important info when im not here.  It helps to vent your problems.....i do have brain fog, but, i had some of this before...lol.....writing myself little notes....i use to come home from work  have energy to do things around here.....BUT, its just me, and the chores will be here tomorrow....i try to do little by little each day to keep caught up....Thanks Cindee for sharing....i think its important for the newbies to know that we are here for them.....Lov Deb  :)~
Avatar universal
Oh, my goodness!!!!!  I can relate.   I am now just "coming back" to "normal'!!???!! or whatever my normal is at this time.
I am 40/48 (this coming Tuesday).  I really missed you guys on the HMB..but have had NO energy to get on line since around 30/48.  It looks like I missed alot, and I see many new people.
One day, I just passed out in public, and went downhill quickly.
NOTE to all on allergy meds:  I started taking allergy meds in September for my throat, rash, etc.  Well, it did sort of help, but unbeknown to me, I had an inner ear infection, upper resp. infection that could not drain as the allergy pills stopped the natural draining process...so my infection had a "home".   I started "growing" an infection that just pocketed for months.  Meanwhile it was like I was "unplugged" from any energy source at all. I was sick and tired of being sick and tired.  Well, my body gave out....Anyway, I have been on two rounds of antibiotics, and I can finally "do" life again.  So, if you are on allergy pills, make sure you are not doing a "double whammy" on your system... I no longer do allergy pills, so I live with the other sx......
The good news is my hubby has done EVERYTHING for me. (I might get spoiled).....I have a shot countdown on my refrigerator and it is exciting to actually "look forward" to shot night, as I take my pen and mark off another "stab" at the dragon.
Cindee, I have NO energy, cannot breath after short duration (numbers not low enough for procrit, etc) Riba Rash, burning throat, anemia, having the blues, although my riba rage has settled a bit, dry skin, cotton balls in eyes, and stabbing eye pain, (sometimes) I have a very tired body, but my mind is spinning like a top....more brain fog since about 35/48.  Constant ache in left ear, some ear ringing, dizzyness, and sometimes just "falling", running into walls (last night I got up to visit the bathroom, and instead of walking into the hall entrance (I could not figure out why I could not find the door) I was trying to "walk" through my bedroom window...DUH!!!!!(Glad my husband did not see that.....I was throwing the curtains around) My "woman" cycle is crazy, I have four bald spots on the back of my head...still get the "flu" ****, and I cough all the time.  I take meds to sleep (weird dreams)  I can hardly wait until I do not feel like this (will it ever be?)
My husband's "assignment" is to come up to me through out the day and hug me and say "I love you".  He is so cute, he sometimes just does it while I am raging and we laugh. Back aches....I could go on and on but I won't.
I REALLY THOUGHT THAT I WOULD FEEL BETTER AS TIME WENT BY, AND, IN FACT, THE OPPOSITE IS TRUE FOR ME....(everyone is different, though)  I do not want to bring anyone down or scare anyone, but the sx are so varied and change every day...mine are worse now...(but only 9 more shots!!!!!!! hip hip hooray)
I started reading the posts a couple of days ago, and when I saw Cindee's sx request I thought it was a good time for me to say "hello" again.   Though I really only posted a few times before when I was active here.......I do not know if you guys remember me....BUT HELLO OUT THERE, MY FRIENDS...I AM GLAD TO BE BACK.  I hope you forgive my rambling......
Peace
Avatar universal
LOL  Wow your posts sounds exactly like me!  Just got out of bubble bath and was sooo relaxing.  Same here..after 6 weeks...things are seeming normal here.  I'm looking up to the sky as I say this and hoping I don't get struck down LOL
Avatar universal
I'LL KEEP IT SHORT, AMEN. HANG IN THEIR AND TRUST IN GOD, STAY IN THE WORD IT'S OUR BEST HEALER. GOD BLESS YOU   LIV4GOD         PS GOD BLESS EVERYONE   - ROBERT   ACTS CH.4 VERSE 22 READ THIS.
Avatar universal
Wow, I feel really lucky as far as sx. go. I had the usual loss of appetite for the first 6 weeks, but mentally I was Wandering farther & farther.  Starting week 7 the only things I ate were ice-cream, twinkies and ice. I crave Ice all the time but that started way b4 tx. I got really forgetful and things kept getting wose through week nine. I was by myself in a town 20 miles from any Dr. or Hosp. and being new I didn't know anyone. My G.I. was 120 miles away and my family at least 100, most of them 200.I got so I couldn't drive(2 fender benders) couldn't judge distance. So I didn't refill a couple of important scripts, and missed 2 weekly Dr. appt.I remember telling my self that if I could Juust hold on til my hubby got home he'd have Mon. off, get me to the Dr. and take care of my scripts. I hadn't cleaned house or did dishes in 2 weeks and was barely taking care of my dogs.  I never felt so week or helpless in my life.My hubby got home Sat. night and I finally told him how bad off I was, so he was ready to take care of things Mon. Then the G.I. called Fri. and cancelled tx.(Can't blame him, they were worried.) I had 2 shots left, I did 10 Fri. afternoon b4 the call. We called
my original Dr. and she said get there as soon as possible. (120)miles. My Dad came and got me and I was hospitalized for 5 days.The only thing Dr. Anne did was take me off 225mg. of effexor and put me on 10mg. of Lexapro and gave me a shot of B-12. She kept me on my riba and lowered my dose of xanax. Within 48 hr. my mind was back(mostly)and my appetite started coming back. Still not great, but I at east eat 1 good meal and have a carnation instant breakfast every morning. I just did shot 15/24 last night and am staying w/ my Dad. My platelettes, which were dangerously low are back up and I no longer have to do weekly blood-work, just monthly, and I haven't missed a shot.I  still feel tired and lethargic most of the time, but about 1 day a week I get a burst of energy and feel great all day. I'm itchy, but nothing like it was w/ jaundice and a couple hives now and then, but very little hair loss and 10 lb.s weight loss. I knew thered be rough times, especially being alone, but I wasn't prepared for how bad it got. So my advice is if you have to be alone most of the time, have a support group that you don't hide things from cuz you don't want to worry them. My best to all,  Love, Joni
Avatar universal
Okay - thats it - now I'm terrified - after reading these side affects that consultant aint coming anywhere near me with a needle on the 18th of this month!!!! Do many people pass out on this stuff - geez I hate passing out - I am tired at the moment - but I feel quite well - I would be crazy to put myself through all this???? Dont know my genotype yet - I have bridging fibrosis so I figure I have a good ten years.........**** I am only 40 and I have a five year old.I have got to take this **** havent I - can I please hear from all the people who havent passed out????? I HATE being out of control - flu - aches - hair dropping out - barfing - I can cope with that lot but passing out????? Why does it make folks pass out?  Do I sound like wimp or what - apologies to all you brave heppers out there - but this hepper aint happy at the mo!!!!
Avatar universal
My thoughts go out to everybody on this board, but especially those who are going through this alone. My own wife started making herself distant and put me out under bad circumstances in my second month of treatment ( now in fourth).She has never apologized or checked on my welfare. Reading about one of the people here having difficulty giving herself the first shot alone a while back choked me up a bit. There are some brave souls and their spouses here.
Sorry to ramble. As to my sx, I can only try to remember. Flu ,chills, bad cough, blurred vision, hearing plugs up so I can't always understand voices at times, hair getting very thin (shaved it bald the other day),almost total exhaustion to the point of barely being able to get out of bed for as much as a week at a time,mouth sores and constant itching, bone and joint pain, dizzyness, but haven't passed out yet Happyhepper! I've had my riba reduced 20% due to blood problems. Very rough this week. But I do have to say the Lord has never given me more than I could take as last week was excellent and I felt really good (Thanks).God Bless you all and thanks for your help.
Luke
Avatar universal
I guess I missed on the point I was trying to make. Most of my side effects were caused by too much, or the wrong type of other meds, not by Pegasys/ Copegus. Also I was told by this forum and by the Dr. I came back to, that this was to hard to try as isolated as I was. It' my stubborn Irish that decided to ignore everyones advice and come hell or high water, I  was gonna do this. Thankfully God spared me(I was  on verge of liver failure again)and now am doing it right.
  But if my liver had not been as bad as it is, if I had years, I still would have treated because I take personally these millions of little basta*** in my body whose sole purpose is to kill me. I'm a  survivor, through alot I'd never discuss on this board, I'm not about   to let anything destroy me as long as I have God on my side and his strenght to pull me through. If I die from this disease, it'll be because it was my time, not because I didn't fight w/ all I had.    Love , Joni
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