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Changes I Have Noticed

Nov 24, 2012 - 5 comments

Greetings everyone!  Thanks for stopping by. Have not been checking in because of severe Tendonitis & Carpal Tunnel.

The doc said the tx meds were out of my system, 6 months post.  But -- I feel they excelerated a lot of pre-existing conditions for me.  Examples:

Arthritis -- Recently woke up with 8 of my fingers in pain; Osteoarthritis
Vertigo -- Extremely more intense and more frequent
Cycle -- Noticeably different during tx and pushed me into Pre-Menopause symptoms quicker than expected
Eyes -- Back to back infections (went to Urgent Care for a 2nd opinion); pain; vision changes (ordinary aging but excelerated)

Yes, my doctors are aware of these issues, but say it is not (now) due to the tx meds.  BUT, I know what is normal for me and this -- this seems like tx sped up the aging process -- for me.  Oh and, some things now they are saying may be excelerated by the Hep C itself.  Which again, is an educated guess on their part, based on my particular medical history.  So, disclaimer -- this is about ME and what I have noticed since beginning and ending tx.  If anyone has noticed anything similar, be sure to let your doctors know so they can help.  It is important to know your "normal" before starting any medication, so you can spot such changes.

Blessings & thanks for your kindness & support.
Bee

(African American; Triple tx with VIC 2011-2012; UND, then relapsed and failed to reach SVR; moving forward)

Rehab Visit Surprise

Feb 19, 2012 - 12 comments
Tags:

encourage

,

Rehab



It has been an exhausting weekend.  A couple of committments kept me out much longer than I could tolerate on these meds.  Thankfully, it is a 3 day weekend, so I have a bit more time to rest.  I visited a friend in rehab.  Had to attend a counseling meeting beforehand and the story below was included.  While I was there, I had to leave to take my meds, as you can't just pop pills in the facility.  One of the counselors questioned me about my meds and what they were for.  To my surprise, when I figured there was no harm in telling him I was being treated for Hep C.....he asked me what my viral load was!  Who does that?!  So it let me know right away that he knew about tx.  He was very interested in my progress and asked about clinical trials.  It was so "nice", for lack of a better word....well, maybe "refreshing" to be able to talk face to face with someone who knew about Hep C tx.  No judgement, no assumptions.  All of us are going through something.  This forum gives us opportunity to help and be helped.  Encourage and be encouraged.  Hoping the story below (given to visitors at rehab today) will inspire you.

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* LISTEN TO THE WHISPER *
A young and successful executive was traveling down a neighborhood street, going a bit too fast in his new Jaguar.
He was watching for kids darting out from between parked cars and slowed down when he thought he saw something. As his car passed, no children appeared. Instead, a brick smashed into the Jag's side door! He slammed on the brakes and spun the Jag back to the spot where the brick had been thrown. He jumped out of the car, grabbed the kid who was standing there and pushed him against a parked car shouting, "What do you think you are doing, boy?"

Building up a head of steam he went on, "That's a new car and that brick you threw is going to cost a lot of money. Why did you do it?"

"Please sir, please. I'm sorry, I didn't know what else to do," pleaded the youngster.

"I threw the brick because no one else would stop..."

Tears were dripping down the boy's chin as he pointed around the parked car.

"It's my brother, sir," he said. "He rolled off the curb and fell out of his wheelchair and I can't lift him up."

Sobbing, the boy asked the executive, "Would you please help me get him back into his wheelchair, sir? He's hurt and he's too heavy for me."

Moved beyond words, the driver tried to swallow the rapidly swelling lump in his throat .He lifted the young man back into the wheelchair and took out his handkerchief and wiped the scrapes and cuts, checking to see that everything was going to be okay.

"Thank you and may God bless you, sir," the grateful child said to him.
The man then watched the little boy push his brother toward their home.

It was a long walk back to his Jaguar...a long slow walk.

He never did repair the side door.

He kept the dent to remind him not to go through life so fast that someone has to throw a brick at you to get your attention.

God whispers in your soul and speaks to your heart.

Sometimes when you don't have time to listen, He has to throw a brick at you.

It's your choice:

Listen to the whisper...

or wait for the brick.


Woe is me....just venting

Jan 06, 2012 - 6 comments
Tags:

venting



(Week 19 w/Victrelis)

ITCH
Today I am itching, itching, itching.  From my scalp to my heels, but mostly on the back of me, so back of legs, arms, torso.  Even my ears are itchy now.  And although I'm sure this is Nothing compared to the Incivek rash, it is still driving me bonkers and making me cranky.  I initially thought it was from Procrit but doc said it's the RIBA. This started when my RIBA was slightly increased, so it almost feels like I am at square one, but worse.  Before (week 2 or so), the itch was a small area and would move around and/or cease, after 2 days.  This time, however, it is covering more of me.  No visible rash, just itch.  Benadryl is not my friend.  Makes me feel like a zombie and barely cut the edge off the itch.  I will be trying a few more things tonight and over the weekend.  Will seek out a Dermatologist next week.  Having this side now, when I am so far along, just doesn't seem right.  Pisses me off.

INSURANCE
My insurance dropped my medical facility at the end of 2011.  I called today to fill out the form so my tx would continue without interruption.  But found out that while it is being processed, I would not be covered but would be reimbursed later. Gee.  Like I have thousands of dollars lying around.  I even mentioned my concern about going into the hospital for an emergency, in that time.  I got the same answer.  Finally got them to expedit the approval because I tried to apply in early December but was told, by my insurance, I had to wait until after Jan 1st.  UGH!!  Somehow, I knew it was going to be an issue.  And on a day like today, when I am itchy and cranky...... not happy.  Hopefully things will run smoothly from here on out, but it still means I may be looking at even more doctor changes, so I will have full coverage.  I did my time of 50/50, 70/30, 80/20 coverage.  The out of pocket really adds up quickly, and takes a toll big time.

MEDS
I take 336 pills of VIC each month + whatever the heck I take for RIBA + 19 injections of Pegasys so far.  Some days, the weight of that gets to me and tries to pull me down in a dark hole, but I do my best to fight back.  Some days I win, some days, not so much.  It is a tiring routine that I am praying gets me well.  I do not want to have to do this again.  As it is, I will more than likely be treating longer than planned.  It's complicated, private, all that fun stuff.  But this is a New Year.  Time to move my focus to other things.  But it is hard to focus on other things when the light at the end of the tunnel just moved back and out of sight, around the corner.

Breathing, breathing, breathing.
For the days I feel I cannot stand....I know the Lord is carrying me through.  But on a day like today, where I want to go running down the street screaming but can't.....I come here to vent.  Okay, gotta do some LOL movie therapy this weekend for sure.

Side Effects & Remedies: A Summary

Dec 02, 2011 - 5 comments
Tags:

victrelis

,

side effects

,

remedies



Hello Cyber people.  
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I began triple treatment with Victrelis on 9-1-2011.  Hep C, Gen 1 (African American female).  Beginning VL 10,7000,000.  SOCs alone, Week 4 results: 329,000.  SOCs + VIC, Week 8 results: UND.  SOCs + VIC, Week 12 results.....pending.
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A Summary of Side Effects

BigDaddy suggested we write down side effects and remedies, so I might as well do that here, while I still remember.  Since I am on treatment with Victrelis, I have a previous entry about SOC side effects, and then those once VIC was added.  Here is a condensed version:

SOC's alone - Side Effects & Remedies
Flu like Symptoms ~ Advil
Insomnia ~  Ribavirin adjustment; taking no later than 7 p.m.; not 100 percent helpful but does help some
RIBA Rash ~ Gold Bond Medication (green bottle, red top)
Shakes, Vertigo, Ear Pain ~ Bonine, Sudafed
Migraine ~ Advil, Allegra
Nausea ~ Ate more food
Weakness ~ nothing
Stuffy nose, sore throat ~ Advil
Nerve pain, right arm ~ nothing
Mouth sores ~ Biotene, Listerine

VIC - Side Effects & Remedies
Dry Skin (especially face & feet), Dry Hair (like straw) ~ Gold Bond Medication Lotion, Eucerin, drinking more water; Pantene, Selsum Blue, Oil spray
Headache ~ nothing helped
Shaky, Vertigo, Ear pain ~ Bonine, Chiropractic
Burning sensation left shoulder blade ~ nothing
Bad Metallic taste ~ Big Red Gum, Ginger Chews, Hot Tamales candy
Slight fever ~ Advil
Nausea ~ salty foods (just a little), Zofran (WONDERFUL!!  It works)
Milky white stuff in the corner of my eyes ~ antibiotics for a bacterial eye infection (that I am sure happened when I started VIC)
Dizzy, tired ~ Rest
Cactus butt ~ Prep H, Tucks pads
Itchy but no rash ~ Gold Bond
Brain fog, lack of concentration, shortness of breath -- symptoms of Anemia ~ RIBA reduction, PEG reduction, Transfusion
Lack of Motivation, Mental Struggle ~ May increase Zoloft .25 mg


All in all............because most of the sides lasted 2 days, then began to subside, things have been tolerable for me.  I have taken off work when I had no energy or when I felt sick or weak.  Otherwise, I am working as I have to keep my job.  By far, the worse side effect for me has been Anemia -- because I have NO control over it.  I started walking slower and slower, no pain thankfully, but my motor skills were going down, down, down.  Horrible "off feeling" in the pit of my stomach, and weakness.  I hope this might help someone in the future.  Sides are different ,medication to medication, and patient to patient.  This is just my journey.  Can't wait to be done and off to SVRland....as someone in the forum said :)

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December 28, 2011 Update

Procit -- Side Effects & Remedies
Chapped, flaking skin at tummy injection sites; no current issues on thigh injection sites; ~ Hot Sixx Oil, Eucerin Lotion, Neosporine, increasing water intake, going to try Sarna Lotion and/or Vitamin E (per tx nurse's suggestion)
Nausea ~ Zofran doesn't seem to help with this type of nausea; small snacks throughout the day help a bit, Ginger Ale
Itching back ~ Gold Bond Medication Lotion, Hot Sixx Oil, Allegra (but it just made me sick, took the edge off the itch)
Itching scalp ~ Hot Sixx Oil helps some but nothing has helped to any significant degree
Bad taste (already have metallic taste from Victrelis but it has gotten worse since I added Procrit) ~ Constantly chewing on cinnamin gum or mints, but nothing seems to help all day

Also.......I have one thing I just noticed that may be from treatment in general -- Brittle nails -- either they are thicker or stronger, they seem 'stiffer'.