Starting TX in 2 Days and terrified

Hi All, not sure where to begin, just really scared about the side effects, more the mental ones.  Has anyone experienced bad thoughts or suicidal thoughts, were you aware of it or did someone intervene on your behalf.  I am fairly isolated as my husband works out of town, but when he is home I could not ask for a more compassionate and loving man.  Just looking for support...because...I AM TERRIFIED EEEEEEEEEEE :)

[7summer7]

I feel ya I start today!  its being dilivered to my door any time. Im afraid too but I have to keep my faith and God says do not fear 365 times in the bible enough to remind us each day......we can do it.. will be thinking of you summer...

[mj6000]

The worst side effect I have is occasional aches like I have a slight fever,but that is only every few weeks or so. Chances are yours won't be bad either. My Dr said the medicines have been cleaned up from the past & are less toxic now. Good luck!
ps...I get depressed sometimes,but I did before anyway.

[newleaf09]

If you look at the statistics, it says 1/3 to 1/2 get depression or irritability.  That means that there are people who DON'T get the emotional roller coaster side effect.  Personnaly, I think most people develop mood disturbance.  The irritabliity can be managed without AD's or other mood drugs but it's pretty hard.  It means just keep your mouth shut when you get aggravated.  Hard, but possible.  Antidepressants do work on stopping uncontrollable anger. If you get the depression side effect, it's probably better to start the AD's.  I can't imagine being sad and miserable and still being able to manage your treatment (meaning taking every single dose, never forgetting or being late).

I had the irritability, work with the public and have a sensitive husband who could never put up with being screamed at.  It took a while to find the AD that worked for me; most of them wired me up and gave me insomnia.  If that's the case, you know it's not for you and you try a different one.  Don't leave a gap between stopping one and starting the second one to try.  If you take an AD longer than a week, your body gets used to it and will throw you into an emotional tailspin as it leaves your body.  Very unpleasant.  I was able to manage on 1/2 dose of Lexapro just fine.  With liver damage, your liver will process drugs slower and you may not need as much of a dose to do the job.

A few weeks after you finish treatment, you start slowly weaning off of the AD's.  Slow so the body can begin to pick up it's job again.  

[montanabln1]

hey,
there is no need to be terrified and not all get sides and if and when you get them they can e also pretty mild and treatable. We can all have some sides on tx and some like myself in their 13 th week have had no sides and I know of a few others who have not been hit by anything whilst on tx.
Just remember to drink lots of water and am sure there will e no suicidle tendencies and if you do feel down just talk to your doctor about get anti depressants.

[Rockerforlife]

10% have heavy sides,10% have light sides,80% fall somewhere in between.

[lsaldy]

Thanks Summer and good luck to you also...will say a prayer for ya and thanks mj and newleaf......I guess I am panicking because i am a control freak about my emotions and the thought of not being able to control my moods is stressing me out hahahah....again thanks all

[lsaldy]

thanks thanks thanks :)

[montanabln1]

speak to your doctor and if you are feeling terrfied est to start anti depressants immediately and if you just feel it is the shock of hep c in itself then you could always wait.
Again I am in my 13th week and fortunate as in not having any mood swings nor being depressive, ut if I were to feel mood swings or depressive I would definately seek medical help and go onto anti depressants.
We do not need to be soldiers and ear pain- act should you feel the need and ask you doc

[Rockerforlife]

I dont even get headaches..no red spots after my shots...my sides are very mild...but i do have muscle fatigue in my legs when i go for a bike ride..i cant go on long runs...i can but im playing it safe...i get dry mouth at nite sleeping and really bad morning mouth..sometimes the back of my hands get tired ...and lately my face gets a oily like film   and i have to wash my mug every 3 hours...its like the drugs are seeping ota my skin...thats about it...

[FlGuy]

Do your have your meds yet and do you have a clear understanding on how you get refills?  Do you have instructions or guidance about the injection?  And, you know the importance of staying on schedule with the meds?  All shots, all pills on time even when you don't feel like it.

[lsaldy]

Got the meds, waiting for me as we speak hahaha.  My first injection is on thursday with the specialist to make "sure I am doing it right".  I was a caregiver for many years with terminally ill patients and my brother is type one diabetic, plus I had cancer when kid, so needles are nothing new to me...getting them and injecting them.  Of course I think the issue is...everyone has a differing opinion about everything, so it is trying to weed it all out...i mean my god i have had 3 different docs tell me 3 differnent things...about the only consistency i have heard is my very first shot is gonna be a doozy, usually 4 to 5 hours after and get ready for the worst "flu" i ever had...i mean the last cold i had was 3 years ago and the flu...me thinks when i was under 12..( I am now ugh do I dare say it? 40 now)

[FlGuy]

It's a good thing that you are so young and undertaking this.  The peg interferon injections are timed to coincide with the time curve of it's effectiveness. And the one shot per week is really one shot every seven days.  So, if you are going to go along with the 'rules' that implies that your 'shot day' will be Thrusday going forward.  Many people take theirs on Fridays so they have a couple of days to wallow in the glow of the stuff over the weekend.  I mention this not to scare you but to illustrate that much of your existence in the next months will be predicated by the treatment.  So, climbing into a niche of predicability early on is fairly important.  Treatment is certainly surviveable and easier from for some people than others.  Hopefully, you are not significantly impacted by the stuff but it's likely to become more than a hobby for you.  Good luck.

[newleaf09]

Sounds weird, but treatment is good for us control freaks.  You have VERY little control over anything in treatment; you just take it and let the doctor know as soon as problems arise.  My mantra has always been Accept, accept, accept.  The mantra has never worked that well on me but it does now.  I'm just too worn out to get worked up about anything.

[Rockerforlife]

The first shot is a myth...you just feel like you have a cold...big deal..you feel cols and shiver for a few hours...maybe headaches and muscle ache...its just like a flu...its the drugs killing of the virus..its all good

[GreatBird]

First shot wasn't a myth for me. Felt like I'd been hit by a truck. Haven't had a response anything close to it ever since. Fever. Shakes. Headache. Nausea. Like the sudden onset of a big flu. But, I was much better the next day and now (25 weeks?) I'm not reacting to the shots at all.

But everyone's different.

[GreatBird]

Oh. And I haven't had any of the mood stuff and I'm not taking ADs. Again, everyone's different.

[lsaldy]

Well I thin k I will hang onto your "tail feathers" and hope i go on the same ride...ok except for the first shot stuff hahahahhahha thanks

[nygirl7]

I never had ANYthing happen the night of my first shot.  But I'd worked myself into such a state I passed out and never moved again. I never had any of the flulike things until about week 30 and then really it wasn't that bad.

I started on Paxill a month before treatment prophalyactically. I didn't suffer any real depression or anything. Yes we do get anxious and wish it were over and stuff but mostly unless you have a real underlying condition you should be just fine.  Fear of the unknown is your biggest enemy right now not treatment.

Treatment isn't fun but for 99.9% of us we find it doable.  Different sides will come and go but by learning all you can in advance you can save yourself a LOT of difficulty.  Doctors aren't as experienced with this disease as you would think. My own doc had no idea that I had anemia and needed to go on Procrit - instead he tried to send me for a chest xray and to an ears nose and throat doc.........I was like uh no please do a CBC and check my hemo then give me the epogen. He learned. I learned. I only learned through the experience of the others in here who had come before me. But those lessons were INVALUABLE and a price could not be put on the knowledge that was given freely to me by people in here who UNDERSTAND exactly where you are and where you are going.

Keep posting. Ask all the questions you can think of. You don't have to post new threads you can ask them in here and we will answer as best as we can.  HCV can be a very isolating disease even for someone with people all around them, you'll find that the support you will get in here will make ALL of the difference in the world. Plus sometimes you'll get a couple really good laughs too - we're an obsessive bunch but we can laugh at ourselvels and sometimes a good laugh or a good cry is all you really need.

Good luck.

[lsaldy]

Thanks..obsessive bunch? me a compulsive controlling personality?  hmmmm sound like long lost friends hahahahahhah..... anyone lose their hair?  heard this is a side

[jdwithhcv]

Yes, we are an obsessive bunch and during tx our lives are out of our control and this will tend to make us a bit crazy.  Its ok, though - around here a bit crazy is about the norm.  

Yes, many people lose hair on tx.  I lost about 50-60% of mine.  It started about 16 weeks into tx, and I lost hair for about 6 weeks.  Then the hair loss stopped for a couple of months and then I had another cycle of hair loss, again lasting about 6 weeks.  It grew back, though (ok mostly it grew back).  I lost more hair on this tx than I did doing cancer chemo.  I did 3 different cancer chemos and although 5FU made my hair get a bit thinner it did not fall out in double handfuls the way it did on Hep C tx.

The good (?) news is that I was feeling so crappy from the severe anemia that I did not have the energy to worry too much over the hair loss.

You will be ok.  Treatment can be tough but getting SVR made it all worthwhile - at least it did for me!  Good luck.  Keep on posting and we will help you as much as MH will permit!

jd

[nygirl7]

Yeah we are pretty bad but it can be pretty funny sometimes the things we get stuck obsessing about...you'll fit right in. ;)

I lost about 75 - 80% of my hair but I had a very rough ride with treatment and if it could go wrong well for me it did. Ended up having to extend to week 72 and had some autoimmune problems which contributed to the hair loss.  I was a pretty grey looking balding vampire for a while - but I went out and got some sunless tanning lotion and went on ebay and bought some wigs (all different shades and lengths) and tried to make it as fun as I could. Well fun isn't the right word but........

Once you remember that you're doing this to save your life things like hair - while still a big deal - are tolerable.  And it does grow back.  FAST - everyone will tell you that it's rather shocking.

Oh yeah and one cool thing...your eyelashes are going to grow LONG you really won't need mascara anymore! We call them llama lashes and they actually hit your glasses or sunglasses if you wear them.  So I guess that is one beauty trade off for having thinning hair right?

[meakea]

I'm in week 40 of 48 and I'm one who got hit very hard with hair loss from treatment.  My hair loss started pretty much with week one when I noticed more hair in the shower drain and it continues today.  I have lost a minimum of 80% of my hair and I had to resort to wearing a wig to work but at home I just use hats.  Actually the wig makes it much easier getting ready for work -- just pop it on and go.   :)

I had the long eyelashes for a few months but they fell out and now I'm pretty much lash-less.  My eyebrows grew long for a few months too but they also fell out and are just now starting to come back.

There are people who treat who don't lose much hair at all so it's hard to tell from person to person how much the hair will be affected.  

[newleaf09]

NYgirl, I have really enjoyed your posts on this thread.

My nurse told me that normally only you notice the hair loss.  I didn't lose much hair for the first 16 weeks, either.  Then for a the last several months I think I've lost a lot, drain is just full. I finally wised up and stopped washing my hair every day.  I'm so dehydrated that I can go a week without ever looking oily.  My hair is long and only looks normal on the day that I wash it.  I can't decide about cutting it and probably won't.  For now I will just wear the world's skinniest ponytail for a while except on wash days.

Oddly, my hair began to grow back at the beginning of treatment.  My pregnancies were like that too, so maybe there's a hormonal connection.  I have wisps all along the hairline and probably inside where I can't  see it.  I just finished TX so I hope I will stop losing in a month when there's less interferon in my system.

[nygirl7]

Newleaf -

Thanks...kind words on the day I am having today are GREATLY appreciated...just one of those days (and I'm not even on tx anymore and can't blame anything on the ribarage and depression cause I dont have any riba!!!! ;)

Makea -
" Actually the wig makes it much easier getting ready for work -- just pop it on and go.   :) "

You know that is the most true statement...- no washing styling curling flat ironing or rollers - no product no hairspray - no dying bleaching getting rid of stubborn greys..........just pop and go!  I LOVED IT and it always honestly looked so much better than my real hair.

See - treatment CAN be fun! We should write a book!  

[lsaldy]

are you all taking a multivitamin also (without iron)??? thx

[Rockerforlife]

My doc said no multi vitams...they still dont know the reaction with the TX drugs...i get all my vitamins from organic superfoods foods now... i live on green powder drinks and organic choclate whey...coconut oil ,apples.avacados..distilled water...organic mac an chesse i LOVE

[lsaldy]

thanks for the tips...i will have to go stock up...green drinks you say???? hahahahhahha no seriously never even thought to go get some of that stuff...sheesh

[IMstacie]

Meakea - you lost your eyelashes!  Darn, I really like having my llama lashes.  I'm around wk 31 by now and they are still long and thick.

Isaldy - My hair is another story, oh how I hate the way it looks and feels.  I lost a ton and I had extremely thick hair.

first shot - took it Friday evening - no problems but the next day, bad headache and was spaced out like I was drugged.  Then I seem to have been fine for a few weeks before the sx's hit hard but I was prepared for the worst and eventually I seem to have leveled out.

I'm also on AD's (lexapro) small dose 5 mg.

Taking a multivitamin without iron, a Designer whey protein drink, and a yogurt drink daily.

Note:  make sure you order your meds weeks before you run out.  Tell them to call you if there is "ANY" problems with the order.  This is important, seems like there is always a problem with the insurance, prescription, etc.  You don't want to lapse and the pharmacy/medical folks just don't seem to understand.

[lsaldy]

Thanks YuK, yes found out first hand about them having to order the product in.......as for the hair...almost wish I would lose it....then i can have the beautiful long hair i chopped off a couple years ago back ahahhahhaha

[Isobella]

Welcome to the forum and Tx Isaldy =)

The worst part of my first shot was the 6 months leading up to it.  The shot itself was totally anticlimatic.  Hopefully yours will be the same.  

I was really speedy for the first 8 weeks or so then things leveled off. Every night I would either move the furniture around, or start refinishing something...hubby never knew what to expect.

My sides have been light.  Some itchies, chapped lips, eyes, numbness, tingles.....very little hair loss...(I answered that on the other thread...oops) Omgosh....I missed the nice eyelash sx, but I have the longest curliest eyebrows anyone has ever seen-I seriously have to trim them with scissors.

I did start Zoloft before tx...not so much because of the tx drugs, but because I was a wreck after being diagnosed...and after my daughter was diagnosed.

I only take a half dose....here at the EOT (45/48) I feel like I should probably increase it, but I am kinda enjoying being  (b)itchy. Trying to figure out if it's tx or midlife crisis, lol!  

I wish you the best with your tx.  I hope the forum is the lifesaver for you that it has been for me.  Everyone here really understands and cares.  

Come on in....the waters fine, lol!!

Isobella

[lsaldy]

Thx Isobella, yup your right...might as well join the pool party ahhahahha

[jonney4141]

i have not lost weight, no hair loss, have become anemic, have very painful sores in mouth, but have been swishing with peroxide and warm water, and that seems to be helping, also quit eating spicy spicy foods. i would love to have those eyelashes tho, gonna go look in the mirror just out of curiosity lol

[winner727]

your not isolated ,you have everyone here !  you will do fine . once you feel comfortable with the shot ,your golden .there are sides, but everyone doesnt get the same ones .  I have never felt suicidal .just cranky . I totally understand your fears .Im a big guy ,and I was the same way ,  untill the whole thing is quite  routine !   reading what everybody says ,you should fall somewhere in the middle .   I take notes    lol       good luck  !     bob

[lsaldy]

Thank you all for your support...very much appreciated,,,Today shall be a flurry of cleaning and getting ready.......just in case ahhahhahahha...................

[charm27]

Wishing you the best of luck on  your journey...One day at a time. I We all anticipated tx before we started. JUST TRY not to let it take over..it will only make matters worse....
We all feel for you..Just remember you are helping yourself....

We are all here for you..drink lots of fluids, make sure labs are done frequently in the beginning of tx....and take one day at a time...thats all you can do.

Again good luck
CHARM27

[nygirl7]

but have been swishing with peroxide and warm water, and that seems to be helping,

I finally started taking a qtip and putting peroxide on it and putting it directly onto the ulcer........it killed them off a few days (hurt like hell to do it but it did work) so at least I'd get a couple of days without them being so bad.  Nothing like that magic mouthwash or anything really worked for me but this did.

I worried putting peroxide and water in my entire mouth might kill off some good germs that you need or something........so soaking the qtip and then putting it directly on the worst ulcer well that seemed to help me.

Just wanted to suggest it to you cause boy I know all about them and they are just yuck dreadful!

[Isobella]

Have y'all ever tried using baking soda on the mouth sores?  Stings like heck for the first seconds, then provides some relief...if only for a bit. Use a q-tip for this, too.

Stevia can help, too. Use it the same way.  

Biotene mouthwash also may help.

[T246]

Don't psych yourself out.  I have had no bad thoughts.  Just start and do not wait for problems to come because they never may.  If stuff comes up you can get what you need from your Dr.  Also you can call Pegassist.  The nursing care is very good.

Good luck