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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-
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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
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