problems post hcv triple therapy with incivek

[shadedjade99]

hello. I am 45 Yr Old Woman Who Has Had Hepatitis C For 24 Yrs . I Have Type 1A  Stage 3/4. I Treated In 03/04 With Peg intro/Ribavirin. Relapsed. Retreated With Triple With incivek. My Hepatologist Wanted Me To Do 48 Weeks Because cirrhotic.  Drs Took Me Off Therapy At Week 31 Due To Severe peripheral Neuropathy And cogNitive Issues. That Was In June. its Now November. I Am Having Hard Time coping with The Person I've Become Since Treatment. my Thinking Is Still Slow. My Memory Is A Memory. i Have Balance Issues And Body Hurts and Doesn't Do What  I Want It To. hepatologist Referred Me To Neurologist. And Any Problems That I Have ThoseTwo Drs Tell Me To See My Primary Care Physician. And When I Visited Her Last Month She Told Me Take The Neuropathy Off The Table, Take Hep C And AllProblems With It Off The Table And Then Tell Her What I Need. I Don't KnowWhat To Say Or Think About All This. I Just Get Upset which Makes Communicating With This Broken Mind Impossible. Who Should I See For Follow Up? How Do I Get Anyone To Believe I Still Have Major Issues That Need Medical Assistance?

[his3707]

My heart goes out to you!   This is such a common story with folks who are having lingering problems.  We are like "hot potatoes". However, you are still within the 6 month post recovery period. There is a very good chance that you will make a full recovery with no lingering sx.  It does take  6 months to get all the riba out of your system.  Wishing you the best on getting these sx resolved!

[shadedjade99]

Thanks Dee.My Current Pcp Skipped neurotin And Prescribed Lyrica. She Told Me Neurotin And Lyrica Same Type Drug But Lyrica Supposed To Be Better At treating Neuropathic Pain. It Took The Edge Off Pain But At Same Time Affected My Balance Which is Already Off To Where I Bounce  Off The Walls. So I Stopped. She Is Hesitant To Prescribe Opiates For Fear Of My Falling Back Into Addiction. And Prior To These New Problems I Can GoAlong With That. But Now That Is The Only type Medication That Gives Me Almost Total Relief And I Am Still Able To Walk Straight And Drive Around InSmall Town I Reside In. So I Don't Know How To Approach That Issue With Her. i Just Don't Know What To Do About Pain Management. Drs Are More Interested In My Not Becoming Addicted Again. And I'm More Interested In Not Being In pain So I Can function Normally Rather Than Lying In Bed Hurting.

[Dee1956]

Hi, oh your story broke my heart.  First of all the problems you are having can be a part of the recovery.
It takes time to recover.  Doctors I have dealt with have no clue.or they do but pretend not to understand  That is why this site is so important.
I was like you, unable to form my thoughts well.  Please hang in there, it does come back.
It does improve.  it takes at least 6 months for the Riba to leave your body.  Even after that it just takes time.
You can help your body by continuing to drink a lot of water to hydrate you and flush the riba out of your system. Small movements, light stretching all can help you.  Walking can help you regain your balance or even ask your doctor to send you to physical therapy. I just found out there is PT for being off balance

My doctors passed me around as well. My Hep doc told me to go to GP, GP said why should I do anything? It is up to him.  I finally had to get a third doctor for the awful pain, he gave me neurontin and that helped a lot. I stopped it after a while but it did serve its purpose.
I would say it took me 18 months to recover.  It happens very slowly.  One day you will have a good day, do too much have a bad day.  It will get better

Hang around, there many helpful supportive people here
D

[shadedjade99]

thank Pooh. I Became undetectable At Week 8. andUndetectable At Weeks12 And 24. I Am To Go For 6 Month blood Work Late December. My Hepatologist And Neurologist Are At A University Hospital. But With My Balance Issues And Slow ReactionsI'm Afraid To Drive Myself There As I Live 80 Miles Away. My ChIldren Drove Me During Treatment, But They Think Now That treatment Is Over I should Be Well And Able To Drive Myself. They Just Don't Understand. I Am Going To Take Your Advice About Getting An Internal Medicine doctor Rather Than Primary Care. I Didn't Think Of That. Go Figure. I Feel,A Lot Of answers For Me Lie With A nuerologist. The One Appointment I Did Make To Neurologist Examined Me And Knows I Have Peripheral Neuropathy. But She Also Feels I May Have Had A Stroke. All I Know That 2Nd Week Into Treatment Something Bad Happened Inside My Head And I've Never Been The Same. Hopefully I Can Find An Internal Medicine Doc And Neurologist That Are Close Enough that I Can Maybe Get Myself There.

[pooh55811]

I am sorry you are having all of these problems post treatment.

Do you know if you are Undetectable? Did you have a 12 week post end of treatment HCV RNA test done? I know it is too early for the 24 week post end of treatment test.

It appears you are about 5 months post treatment. Some of the symptoms may still resolve or get better. It took me several months for all of the symptoms to resolve. I still have some lingering psoriasis and rash issues but i also have Sjogren's Disease which i had prior to HCV treatment. I am 15 months post treatment and I still occasionally have a little brain fog.

However, it sounds like you have some problematic issues which have not resolved. It is unfortunate that your doctors all seem to be passing the buck and no one seems to be addressing your problems, concerns, and medical issues.

I don't know what type of testing you have had. It seems like you should have had a thorough neurological exam and work-up as well as several neurological tests done. I don't know if you had any of this. But they need to find out what is going on with you. You could have some serious neurological problems and you could have an identifiable disease process going on. This will only be discovered if they do thorough exams and testing. If it was me, I would get a different neurologist, preferably one at a University affiliated medical center.

Unless you are really satisfied with your Primary Care physician, you may want to get a new Primary Care Physician too. They should not all be passing the buck.  If it was me, I would try to get a Primary Care physician who specializes in  Internal Medicine, not just a General Practice or Family Practice doctor. Those who are Internal Medicine physicians have more education than the Family Practice and General Practice physicians have.

If you have joint issues, a Rheumatologist may be another doctor to see.

Best of luck. I hope you find some answers.