All Journal Entries Journals

I had to stop incivek and triple therapy :-(

Nov 18, 2011 - 15 comments


So I went for my 12 week blood work and the doc went ahead and pulled me off everything...again!   Well, I guess I will be an experiment to see if 3 months will do it. I have sx that are not listed and he was worried they could be irreversible. I am having a major chemical imbalance in my brain. I am going crazy, and I thought I already was! LOL !!!!! I believe I should go into more detail just to make this clear for all of you:
You all don't know me that well, so just generally speaking I am VERY laid back, over friendly, extravert that loves to dance, sing and play hard!
Okay, now I am VERY uptight, nobody should talk to me, I want to curl up in a ball in a crowd, all noise echoes and surround sound is all reverb and base, commercials are of the devil, I need a mute button for the world. I only smell drugs. I only taste drugs and metal. I can only eat Raisin Bran, Ramon Noodle with no seasoning-bad msg headache. Everything feels gritty, I can't stand touch...even myself.

I have gained so MUCH more insite to the brain and chemical imbalances and can now sympathize with others with these problems. I use to not understand this...being a massage therapist and all. OMG, I understand that the balance of the brain controls everything. Everything has to be firing right for you to feel right. I pray that this all reverses and that I can become SVR. I will find out by next week if I'm still undetectable at my 12 week point. If I do not SVR, I will have to wait a couple of years before restarting something else. I will continue to keep you current on my post treatment recovery and svr results. I love you and I am here for you too.
BIG HUGS !!!

Ps...I thought about posting this to the forum, but was afraid this may scare somebody off that won't have my side effects. I think I will post this to my journal, so if for some reason you want to share it with someone else going through this... feel free.

Oh...and Reports just came out showing 93 % on 24 weeks on triple therapy / incivek have achieved SVR, so maybe 12 will still work too. I can only pray!


Comments
Post a Comment
1840891 tn?1431547793
by ceanothus, Nov 18, 2011
I'm so sorry to hear of your horrid Sx, and I am sending all my hopes and best wishes that you will soon regain your normal brain and emotions AND that the Tx was enough for SVR. Keep up posted on your condition as you get the drugs out of your system. Did they tell you to continue the high-fat intake for a while to help wash the drugs out of your system? I read someone else's post a couple of weeks ago saying that their Sx got worse after stopping Incivek until they learned that it stays in your sytem unless you continue eating high-fat for a few weeks, but I can't find this on the Incivek website so I'm not sure of the facts. Your worse Sx are more likely caused by the interferon anyway - I'm on my third treatment with it and it always makes me depressed and a sort of different person. Much less than you are experiencing, but enough that I can imagine your experience. I hope you recover from it as quickly as I have the two previous times - which is to say, about 2-3 weeks after the last injection. Take good care of yourself!

Avatar universal
by coeric, Nov 18, 2011
i am only on week 8 and can empathize with your symptoms.  hopefully 12 weeks does the job! please let us know how you are doing.
eric

Avatar universal
by maxandchris, Nov 23, 2011
Greetings.  I am a stage 1-2, VL=1.5m, starting triple therapy Dec 2.  Incivek.  Any tips?  Will I be able to drive to my weekly control?  thanks...mark

317787 tn?1473358451
by Dee1956, Nov 24, 2011
Hey there I just read an article from October that says that people are actually getting to SVR with 12 weeks of tx.  I realize this is a very new subject to wrap your brain around, espeically if your did 48,56, 72 or more but maybe this new medicine is really working well.
Saturday is my last day of Incivek, while I could go on a bit more the worst side effets of blisters in my lips is more than painful and I know why my lips are glued shut every morning.  It started with us thinking it was thrursh, then felt as i my entire mouth had been burned, then I could not smile, then today found all these little Painful blisters.
I hope I can find something to provide some comfort so I can eat so I can take more of the crap that might e causing the blisters lol
Happy Thanksgiving
Love to all Dee


446474 tn?1446347682
by HectorSF, Nov 24, 2011
Hi Dee.

I am so very sorry to hear of your reaction to the meds. Sounds very scary. It is good that you can separate and observe what is happening to you and realize that it is the meds and not you. I have experienced depression with some disassociation which reminds me of some of your symptoms but then again what you are experiencing also sounds different... more anxiety symptoms- "VERY uptight, nobody should talk to me, I want to curl up in a ball in a crowd,
and the dissociative symptoms - "all noise echoes and surround sound is all reverb and base, commercials are of the devil (actually they really are. ha ha). I need a mute button for the world. I only smell drugs. I only taste drugs and metal. I can only eat Raisin Bran, Ramon Noodle with no seasoning-bad msg headache. Everything feels gritty, I can't stand touch...even myself."

I admire your courage to even deal with these scary things. I hope you start feeling better very soon. Remember we are all individuals and how we react to drugs is unique. I am sorry you had to go through this. You gave it your best shot and that is all any of us can do. You will need to regroup and find a new way to conquer HCV. Or 12 weeks could e the ticket.We can hope.

Try not to despair too much. Progress is being made at an amazing pace in the treatment of HCV. In time their will be something available to you that will cure you. And maybe, just maybe 12 weeks will do the trick. Let's hope so.
Your viral load was undetectable before or at week 4?

Did you ever treat with interferon and riba before so you can know that it is the telaprevir that is causing your symptoms?

Hang in there kiddo! We are rooting for you. Either for 12 weeks to do it for you or in time you will come back another day to fight and beat hep C.

Best,
Hector

1807991 tn?1438779770
by MsDragonSlayer, Nov 24, 2011
Thanks Hector,

Hector,
I was clear at week 4, and doc seems to think there is high probability of SVR, they are seeing more and more people coming through the office with time cut short that are reaching SVR.  I can only pray I'll be in the drawing!

  I will let everyone know if I get a UND on that 12 weeker!  I thank you all for your love and support!  I couldn't have gotten this far without you!

Dee, I still have sores in mouth, my tounges still swollen, lips are cracked too.  How will we ever make our dentist appointments!!!  

I fear the sound of the drill is going to make your eyes crossed and get stuck!  You know...if i were you, i would reschede that filling till after tx.  It also may be too dificult on your mouth and those injections may not the best mix with your tx.  Did you tell your doc about your dentist appointment?  You might to make sure the drugs they use.. dont interact.  I had to do that just to get a cleaning!  My doc told me i could use the topical, but preferred me not to have injections or gas.  

They say that pain is weakness leaving the body...well if that's the case...you are gonna one strong mo fo!  

Hey whatever mistakes you've made along the way...well baby...you are makin your amends!

Love love and gobble gobble,
~Carolyn

Big hugs,
~Carolyn


1856046 tn?1330237245
by BigDaddy_59, Nov 24, 2011
We are all pulling for you!!!!

Here is what is going on inside your body. The beast is dead!

http://www.youtube.com/watch?v=ITT9W23OUuk

I know what you mean too about getting insight to other peoples woes. I became hypersensitive during one of my 3 treatments. I couldn't walk into any grocery store without being overwhelmed by the fabric softeners, but it passed. I thought I did OK mentally during the Tx's but my wife tells a different story.

Like Hector says I admire your courage to deal and you have given my courage as I get ready to start my 4th treatment!!!

Peace to you, God Bless, and Happy Thanksgiving

Chris

Avatar universal
by Johnee1, Nov 24, 2011
Do you have a link to the report showing 93% SVR after 24 weeks of Incivek?  thanks

1807991 tn?1438779770
by MsDragonSlayer, Nov 24, 2011
I did, I tried to post the whole thing and it was over 800 characters...I can't find it anywhere?  My brain is not firing on all of its cylinders, sorry.  I will try to get again and just post the link!
;-)
Carolyn

1896835 tn?1321572603
by Chelle91971, Nov 25, 2011
I am sorry, I do not know as of yet, what all of the acronyms mean. I am learning. I learn more every day. All I know is that you are suffering and that I am so sorry and I feel  sad when I read your words. What strength one has to endure so much. I admire you for this. Please know, you are in my thoughts and prayers. I wish the very best for you. God Bless you. <3

317787 tn?1473358451
by Dee1956, Dec 09, 2011
In the proscribing infomration that comes with meds I believe it sais 86% for relapsers however I do not have the paperwork in front of me,  I will say, this is the best chance I have to recover.  11 days off Incivek, getting better, it is slow to completely go away
Thank you for sharing
D

317787 tn?1473358451
by Dee1956, Dec 10, 2011
Hello I believe that there have been some drugs added to Inciveks list of contraindications or modifications
I think it will come out soon at least I hope so for the people behind me.  I am much improved and wish you all the best
I am now on14 of 24 weeks
Dee

317787 tn?1473358451
by Dee1956, Dec 10, 2011
Ok you will be shocked I am a little confused, my paperwork actually says Shot 15
I guess I was counting each shot, then for Incivek I had to count the week a week later so I would wright  shot # week #
I think I am further ahead than I think but I will ask for help ha ha
Blessings to all

Dee

1735424 tn?1357433558
by Lifenet62, Jan 02, 2012
are you still on tx?\

would love to hear how you are doing now...
blessings
jan

408795 tn?1324935675
by fretboard, Jan 03, 2012
Oh my, that's terrible!  Glad to hear you're alright now or at least better off than you were.  Tx is not for everyone and there is not a one size fits all, that's just not the way drugs work.  At least your doctor realized that the lessor of two evils was to take you off.  Hope things work out for you, if you're not SVR there will be another day for another fight.  Good Luck and God Bless!!

Post a Comment