Worst day for tx Sx and most common Sx

[headshop]

I have read many, it seems like the worst day for many after tx is the third day, so many sx, curious as to the most common.

Thanks

[TonydNJ]

I have posted before and last night was my 7 week shot. It's funny with me, It is now 4:00 pm eastern/standard time and the only thing that i have been feeling is of course the fatigue. In my previous post I had mentioned my concerns with shortness of breath, cough, ears clogging. I have seen all different specialist, pulmonary, and was told i had asthma, then 2 weeks later took another asthma test and was told i don't have asthma and that i have sinusitis. prescribed antibiotics and then i decided to see a ENT which he was able to view my cat scans on my sinuses and says i don't have no sinusitis, just a deviated septic. then friday night i come home with my wife after going to dinner for my bday  and my pulmonary had ordered a echo cardiagram last week and results come back and sectretary tells me i have a little boo boo. just what i want to hear on a friday night and i don't see him for the whole weekend till monday night for more accurate info. I told secretary get the doc on the phone and of course he calls me back 1 hour later to tell me that i have a leaky valve on the right side of my heart which this is all new, all these crazy symptoms all started with me once i started treatment. Of course at the beginning the first 3 weeks i had the flu like symptoms, etc, but my weight dropped and doc lowered my dosage of inteferon to 0.4 instead of the 0.5 and flu like symptoms are just a little on saturday night. Anyhow sorry to take up so much time but i really don't know what to do. thanks Tony

[headshop]

Thanks Red
Actually I read a post on here when I first found it that said they felt better already after about the 3rd tx or so. Was my first few times on this site, wish I had tagged it.
Hopefully we all can post something just as good someday.
Thanks

[links1999]

this was a great thread, i guess i'm not too crazy afterall. i've finished 16 weeks and i can relate to most of the experiences. its doable, but not fun. i tell myself repeatedly that one day certain it will be overwith. that seems to help.

[merryBe]

well my theory is now based on how I inject...

since I have lot of fatty thigh tissue, I angle the shot at 45 degrees and instucted, but I also only put the needle in about 2/3 of the way...not all the way as they say.

this insures that the solution stays in the fat layer.

since the blood circulates through muscle 2 to 3 times faster than in does through fat, the more you can contain the medication in the fat layer, the more evenly it will distribute through the week.

my first couple of shots I didn't do this...and the medicine was deeper in and close to my thigh muscle...and then day 2 was the pits.
Now that I keep the meds more subcutaneous there seems less severe days...but a more noticable general reaction day 2-4...although, I haven't had any nausea sice changing the depth of injection.

(so basically they give you a really long needle, putting the meds to close to that blood filled thigh...which causes more immediate absorption and hence more nausea..
just my experience, but based on what I know about circulation...a pretty valid premise.

(also, if you do hit a blood vessel, you will get more sides fist day...so you really want to go for the fatty layer and avoid bloodvessels, they tell you that in the instructions).

[donnieraye]

I'll get my 9th shot tommorrow, I missed shot #3, so I really dont know what week I'm on, but I do know I took my first PCR today, now I wait for results.  SX are changing every week, but they seem to be consistent with most.  I'm 1a, started Neupogen week 2-3. I have alway had very long hair, and will be making my 2nd donation to locks-of-luv when I hear I'm UND.  I just might try that bob cut this time, I usually leave some length to grow it out again, but that seems silly now.  I alway read, but rarely post to this site, maybe next time I'll remember to use paragraphs. LOL    Heating up in Florida!!

[kitkat14]

I'm new at this (3rd shot tonight) but so far my worst day seems to be Tuesdays.  I get a headache and feel somewhat nauseous throughout the day
k

[allanh]

I'm in the Bay Area, there's no such thing as a normal anything.  :)

Our local group usually starts with everybody taking a turn to check in on how they're doing, including introductions. From there, we might have a speaker, or a round-table discussion.

The best part is someone always brings a fresh fruit tray ... and after a weekend of feeling like I have trench mouth, a few pieces of pineapple and melon do a great deal to revive me.

(Of course, I really go for the MEETING part.)

:)

[headshop]

Well no near local support groups around here. I do go to AA and NA meetings regularly. A lot of people have experienced HCV tx in those, will check around.
Maybe start a group, what is a normal group meeting like?

[booocooo]

Hi :)

I just had my 8th shot last night/24 total and I'm usually just nauseas that day after, then Saturdays (two days after is  when the fatigue sets in).  That lasts until about Monday night and then Tuesday, Wed., Thur. I feel better.  Thus, the wheel starts again Thursday night.  I just try to look at the bright side; I have three okay days a week :)

[redrodeo]

     Well clearly you hit upon a subject that we all have in comman.  I wonder if anyone as said "I never have felt better" while they were on tx?.
     I just finished 24wk tx for geno 3a. Two things got me thru: 1) I was clear at 3 1/2 wks and 2) I had a consistent supply of pain pills, sleeping pills etc. My last shot was May 11 and my body still hurts. Joints are still very painful and swollen. That  is some nasty stuff. And there doesn't look there is anything on the horizen that doesn't involve interferon and riba. I never would have dreamed that a little virus could be so hard to cure.
Medicine has cured many virus in the past. Why not this one?
      Sunday night was my shot nite since I was on a leave of absense. No need to go into mt s/es they were the same as everyone elses. The hardest part was the mental part.
      Adios from south tx  Red

[headshop]

Thanks Allan
It is very helpful. I was interested in the local HCV support group. I will check around here to see if we have one nearby.
Thanks again,
Bill

[allanh]

Just finished Week 48 of 48.

After a year of this, all I can remember is that I had at least three "worst days" during TX, maybe more. :)

I took my injections on Friday night. My worst day was generally Saturday. As TX progressed, I started having occasional "three day bounces", where I'd feel even rottener (is that a word?) on Mondays (and sometimes Tuesdays).

I've been told that three-day bounces are common for many people. The hardest part is figuring out what your new schedule needs to be.  For me, it was:

Friday night, 7:30 PM ... take my Pegasys shot, go out to dinner at a local restaurant, go home and watch Netflix movies until I started feeling flu-ish, then take a couple of Tylenol PM (on my hepatologist's recommendation), a sleeping pill (Ambien), and do my best to sleep through the worst of the TX.

Saturday all day ... stay home, watch Netflix movies, do as little as possible.

Saturday evening ... see Saturday all day.

Sunday all day ... do as much shopping (groceries, etc.) as I had energy for. (Not much, usually.) Sunday afternoon is when our local HCV support group meets.

Sunday evening ... see Saturday all day.

Monday morning ... return to work feeling hungover.

Tuesday-Friday ... work, but take care of myself and recognize my physical limitations.

Which brings us back to Friday evening. :)

I've been VERY lucky - I was able to work all the way through TX, although over the course of the year, I probably used between 1 and 2 weeks of vacation time staying home from work when I felt really crappy.

Does this help?

-- Allan

http://hepatitis-c-log.livejournal.com/

[GSDgirl]

I also cut my hair short, that inverted bob where it is real short in back (kept my hair from sticking to my neck) & longer in front so I could put it behind my ears.  The thinness isn't as noticable.

My sides were also on different days.  The first 2 weeks weren't too bad, some fatigue and neck, shoulder muscle spasms that worse than normal.  After that 3rd shot it was awful, a flu feelimg like I never had. and it was there a lot.  I was lucky as winter is the slow time for our busineses so I didn't do much.  On my few good days a week I did the laundry, swept the house (2 german shedders--hair) tried to keep the books up and did payroll on Fridays.  I never really had the nausea.  Kept the woodburner going all winter and never put a coat on to go outside, it felt great it seemed to stop the sweating.  I was / hopefully geno 2.  Good luck
Denise

[headshop]

I know it helped me battle addiction when I could share experience, strength and hope to people that can relate to what I have or am about to go through. The same here I believe, I really get so much from hearing your support and experiences. I get a lot out of sharing my feelings. It seems like I leave some of the anxiety and fears on the forums.
Thanks
Bill

[Trinity4]

NYGirl - Thanks for the words of encouragment.  Funny thing with me, I really don't care about my hair.  I cut it short last week hoping it won't be so noticeable when it starts to fall out big time. Haven't had short hair since I was a little kid.  I fully expect to look like like a hag/troll but at my age (56) who's gonna know the difference anyway!!!  I let the vanity go about 5 years ago.  My biggest complaint is fatigue and fevers right now.  It's like what came first the chicken or the egg?  Does the fever cause the fatigue or does the fatigue cause the fever to spike?  I'm a stubborn Italian so I'll get through it but without you guys I wouldn't have nearly the determination.  My sx pale in comparison to some and I feel lucky despite everything just to be able stay on tx so far.  Denise, I don't think I've ever been "sane" in the literal sense, maybe pleasantly crazy.  I just hope the pleasantly doesn't go away!!! LOL  Thanks for listening my friends.  I always feel better after a good b!tch session.  
Trin  

[jdwithhcv]

The hair loss is so harsh.  Like NYGirl I hate that part the most.  Of course when the anemia is really bad I'm so busy trying to breathe that I don't have time to worry about my bald head!

I take my shot Friday evening, the worst sides from the injection are joint and muscle aches, and the flu-like stuff (chills/fever/headache).  Usually Sunday and Monday are bad, but some weeks its Monday and Tuesday. The fatigue and the anemia are everpresent.  Dry skin and dry mouth too.

Good luck with your tx.  If its anything like mine, every day will be an adventure.

jd

[headshop]

I am GT 1A also, long road ahead. I am so self centered the losing hair deal, seems to stick in my head, like it would be more acceptable for people to see me throw up or sickly, than with hairloss. Certainly one of my character defects.
Thanks

[nygirl7]

I was a geno1A and also 1B.  They are gone. hang in there.........if I can do it anybody can make it and succeed!

Although the most physically exhausting side was the anemia for me...mentally losing 80% of my hair was probably the hardest.  Thank God for ebay and their wig shop...it kept me sane (well as sane as i'll ever be!)

[Trinity4]

Well said.  I also work and getting through the week is a victory.  I try not to dwell on the negatives but WHEW sometimes it gets pretty rough.  I have accepted my altered state as the norm now but I hate it cause the happy go lucky Trin has gone away.  I just keep that SVR as my motivation even though I know the odds.  Geno 1A as well.  Haven't been down the Neupogen road yet but came very close a couple of weeks ago.  Platelets tanked and thought I might get pulled off but came back up thank goodness.  I guess we just never know.  Best of luck on your journey.
Trin

[mar148]

The worse days varied for me during treatment.  Initially it was the first couple of days after, then it varied.  I was only in bed one day completely the entire TX.  Though I did have sides (nauseous, sweating, fatigue) I was able to do my job and they came and went.  Frankly sometimes I felt pretty normal.  So while it is easy to say not to get too worked up before treatment, not everyone is significantly impacted with debilitating sides.  I for one, wasn't.  My sides did diminish after the first 8 weeks also.

[dorsey15]

sides are different for everyone.....I'm on my 20th week and have experienced a LOT OF SIDES....FATIGUE AND NAUSEA are primary for me...but more keep popping up as time moves on... my hair started falling out about 6 wks ago...I've had anemia from the beginning..low white count too.  been on neupogen since 3rd week and intermittent procrit shots too...INSOMNIA is a bear!! especially if you have to work thru this treatment.  I'm geno 1 A--so I'll be at this a while !!  The depression kicks in because much of your time if you work is spent working and then in bed recuperating from work...and fatigue.. not much of a life...weekends are  spent in bed because of neupogen shots on top of INF shots...and then recuperating from working...then right back to work on monday.....IT'S rough..so be prepared for some CRYING DAYS!  This is not easy to do....
Have a great day..
Dorsey

[Texas714]

For me it was the very first night I took the shot.  Now it may have been all in my head but I don't think so.  Further down the line with treatment the story changed a bit...but it was the first night I will most likely remember best!  :-)  

[Trinity4]

My worst days are Tuesday and Wednesday after injection on Friday.  Guaranteed low grade fevers and extreme fatigue.  NYgirl is right, it is essential you allow yourself some down time to recoup.  That didn't sink in with me until just recently because I thought I was superwoman and didn't change my routine a whole lot.  This is my 10th week of tx and it's really starting to kick my butt.  I have to rest in order to get through the sx.  Allowing myself to become overly tired makes sx worse.  I'm hoping the sx will level out but I'm finding out just when I get through one dilemma something else takes it place.  Low platelets, low white blood cells, anemia all play a role in how you feel.  It's not uncommon for all three to happen while on tx.  There are rescue drugs for anemia and low WBC so make sure your doctor in monitoring you closely.  Don't fret about it too much.  It's different for everyone and hopefully you will not experience difficult sx.  Listen to your body, it practically screams at you when you're not allowing it to rest!!!
Good Luck
Trinity  

[nygirl7]

For me it was the day after shot day.  I was just wiped out completely and needed to rest, so I designated Saturdays my "Day of Rest" and laid in bed and snoozed and watched tv and ate ice cream. I have to admit it was a special treat and I sort of began looking forward to it instead of dreading the day coming.

It's just CRUCIAL that you get enough rest to be able to make it through the next work week so it was the perfect time to use this excuse :)