Third round of tx, praying this time will be the charm, as the saying goes.....

[mindy]

Hi, first I apologize for not posting in so long, one of my BIGGEST character defects is ADDICTION, not only to drugs and alcohol but to farmville to.  I say to myself mindy go to your Hep C fellowship and check on all your dear friends, then get on facebook and farmville and never remember to come and post.  I saw my Liver Doctor in July, I have been off treatment for 3 1/4 years, 2 rounds of tx and both didnt work.  Now, the new drug Vertex made is FDA approved and I just finished all the pretests, I go for the little lessen on the new drug.  The meds have been sent for, I have no fear of doing a third round, I am sorta of sad because my medical insurance will only pay for peg-intron not pegasyst, peg-intron is much worse side effects on me, mentally, physically, spiritually, still I know I have God with me at every minute of every day and I can and will handle this third round.  If anyone in our fellowship has already done 2 rounds and tried this new treatment including the new drug, a pill taken 3 times a day, please will you give me some tips besides that I must eat after each pill, lots of excersize which I am learning one day at a time, Missymouse gave me tips on that, I have Betty and Becky, Bill, Willy, all of you have given me advice and positive outlooks on living life both with genotype 1A hardest strand to beat, and living life on lifes terms.  When I come here and post I feel just like a do when I go to an A.A. meeting.  This is an awesome fellowship I belong to and thank Bill Wilson, for showing those of us with the addictive personality how to deal with not drinking/druging/ just one day at a time.  I am going to try to post here and come to heppers chats while I go through this 3rd round.  love you all.  mindy

[MissyMouse]

Mindy I moved your topic over to this section to make sure it was seen.

Good luck to ya gal pal .... there are have lots and lots of success stories so far with the new drugs.

Mouse

[rayc2001]

Best wishes!!! 3rd time could be the charm

[DougV]

Mindy,

I too am on third or fourth, depending on if you count non-ifn/riba round.  It surpr isingly has been better so far this time.  Plus und at week 4 is good motivator.

Good luck.  I am at end of week 8 now.  If I can tell you anything let me know.

Doug

[willy]

Mindy, a few things.......

You hold a good chance at succeeding this time but you need to give it your best effort.

I see you have been taking vitamin D; make sure that your levels are up before treating.  Some of us also have lower levels of other micro nutrients; maybe zinc or selenium or other vitamins such as B but in general it may be worthwhile taking a multivitamin.
 
I don't know where your iron levels are but unless you are post-menopausal you could possibly be anemic; worth a peek with an iron panel since you have insurance.

As of late coffee has been in the news a little for seeming to improve viral response.

Factors which could reduce viral response may be having a higher BMI or IR Z(insulin resistance).

So far as which drug; I would think that you might ask/insist about Pegasys if you are doing Incivek/Telaprevir.  That is the drug which the trials were performed with, it also comes with a slightly higher riba dose (I think) than Boceprevir/Vitrellis.

I believe the doctor prescribes the drugs and the insurance pays.  IF you also fit the guidelines and your household makes under 100K per year i believe that you may fit into a free Incivek assistance program.  You or your doctor can check into that.
I don't think I've ever heard of insurance refusing to cover one drug or the other.  I have heard of some doctors being more familiar w/ one drug and therefore preferring to keep their patients on that drug.  I'm no doctor, but the prescribing information with Incivek is PEGASYS (not peg-intron).

I believe Incivek will yield a higher SVR rate but if you have been plagued in the past with riba rash issues the Victellis may sidestep rash issues better than the incivek.

Good luck and thanks for checking in.  I hope that this is IT!!!

willy

[Betty W.]

Mindy. You know that I can't give advice about the treatment ; however, i am fairly good at talking and sending

up some prayers ! My favorite is take it one second, minute, one hour, one day at a time !!!!! If you do this

and do the things Mouse did I feel very sure you can lick this thing.......Its not going to be easy but planning and making

time for the girls and the "addictive FB" you can do this thing. We all believe in you....Just believe in Mindy !!!!

You and I have talked about how hard life can be.....I believe you have beaten the hardest part, now "pull up your big girl pants"

and go for it !!!!

I love you, kid....
Betty

[DougV]

BTW on the assistance program, everyone is getting approved right now and it is really easy.

Doug

[willy]

PS......I believe Pegasys has a higher SVR rate.

Why do they want you to treat with an off label drug, with lower efficacy and that has had more sides for you? 
Makes no sense.

[mindy]

Hi and thank you all, my dear friends, each of who I have felt close to for 6 years.  Okay, Willy, what I was told is my insurance company was offered the peg-intron at a lower cost
before the Pegasyst Pharmacutical company even had a chance to offer a price.  My liver doctor's office is telling me my insurance will ONLY pay for the peg-intron.  You are right, this time it is 3 yes THREE riboviron twice a day, the drug is incipid, made by vertix I think, I must take 2 in the a.m. eat fat foods (which just on the pegasyst and peg-intron I could not eat at all) I must eat so many ounces of fatty foods within 30 minutes of taking the incipid and I must never miss one does of it.  They told me about the rash side effect, I never got the ribo rash on the other 2 rounds because I only took one ribo in the a.m. and one ribo at night, now it is 3 ribo in the a.m. and 3 ribo at night, plus two incipid in the a.m. two incipid at lunch and two incipid around dinner, besides my seizure meds and the lacex and potassium I am taking because something is making me retain all the water I drink.  I was told I must not use any perfumes, dyes while on treatment, in other words, when and if the rash shows up I can only use lotion that contains no perfume, dye, no dryer sheets, unscented, dye free downy fabric softener instead, they told me about the odd itch people get in their rear end, the incipid makes skin very sensitive.  Full does 5.0 of the interferon- once a week, and already they and I know within one month, I will have no white cells or red cells so I will again have to do the procrit and neuprogen.  Betty and Missy, all of you have taught me to start to keep active
and I am doing these things.  The girls are now going to be 8 in Febuarary and I will be 51, lol, hopefully they will help mommy when mommy feels flu like on weekends.  I am going to stay close to all of you and my dear friends in my other fellowship, I am praying that Doug is right and the 3rd time will be the charm.  The viral load is low, so my chances are really good, I pray for Missy and everyone with HCV and every other Chronic illness.  Thanks for being here for me.  I think the meds will be here next week.  I will post as soon as I start the meds. love you all
min

[MissyMouse]

Mindy my skin really took a beating on my last round of treatment and I'm actually still under the care of a dermatologist.   I was taken off all dyes and perfumes as well.  Here are some products that my dermatologist has me on that are fragrance free, dye free and PABA free:

Lotion:  Vanicream
Shampoo and conditioner :  Vani Cream or Finesse Free and Clear
Body Soap:  Cetaphil or Vanicream
Laundry Detergen:  All Free and Clear
Makeup: Clinique
Sunscreen: Vanicream

Hope this helps.

Mouse

[DougV]

Mindy,

The rear end issue, if you are unfortunate enough to get it, is sadly worse than they make it out to be.  Number one thing to ease the pain is shower, bath, whatever immediately afterwards.  Moist wipes are less irritating than toilet paper.  And if you do have this happen nuts become an undesirable fat source unless ground.  Passage can get rough.

You may get a mild full body rash within first week or two.  Oral benedryl works well.  It does't itch, not very noticable, and goes away in few days.  That though is not the rash you worry anout.  It tends to come on later on, after few weeks.  So far I haven't had it so no suggestions.

Incivek can worsen anemia, I take weekly labs, CBC only, just for that purpose. With known issues you might see a hematologist and see if you can preplan a bit.  In my case no procrit, didn't work too well, and all have agreed no dose reduction, so I am going to go route of packed RBC infusion. Especially if you have had to undergo dose reductions this could be important.

Best of luck,

Doug

[Helen]

Wish you the best of luck Mindy. 

[mindy]

Thank you for your replies, lots of good tips, Missy, I was told to use eucerine lotion, unscented, undyed downy fabric softener instead of dryer sheets, and I have always used unscented undyed dove bars of soap because my skin is already tissue paper thin from the other 2 rounds of tx.  the thing that has me worried the most is instead of one riboviron in the a.m. and 1 riboviron at night, they want me to take 3 three ribo in a.m. and 3 ribo at night, along with the incipid (vertex pharmacutical) 3 times a day.  I just don't know how I will manage to eat at all and they told me the incipid will not work if I do not eat so many ounces of fatty foods within 30 minutes of taking the incipid 3 times a day, plus the 6 ribo and the one PEG-INTRON which is the more harse of the treatments.  I will survive, Betty is right, pray to God, stay in just for today each day, I am not going to look at this with pessimistic attitutude, I am looking at it with optimistic attitude and follow you and Betty's instructions on excersize, Doug, you are a big help too.  I never got the ribo rash before, but now 3 in a.m. and 3 in p.m. plus 5.0 full dose of peg-intron and added incipid, I am just praying the rash if it does effect me, I will find a way to survive a minute at a time.  THANK YOU ALL FOR ALWAYS BEING HERE FOR ME.

[mindy]

Hi Heppers, when I came to see if anyone had advice for me, I noticed I have been spelling incivix - incivid, so far I havent heard from my liver doc or nurse or the pharmacy so I sit and wait to start this and WIN.  Missy, did you have to get a prescription for the lotion, shampoo, all the things you used from your doctor or are they sold over the counter?  I am praying for you my friend, I am overdue to go to the ob/gyn and have been so busy doing all the pretests for this next round, I totally forgot to make the appointment which should have been done last month.  I will now, I am wondering if my medical insurance (medicade) is trying not to approve treatment for me.  I will not be surprised, I had to fight every time, hopefully they will just approve it, but Peg-intron, uuuuuuugh, I guess I just am wanting to get started now while the virus is low.  This Incivic I pray will crash genotype 1A once and for all.  I will let everyone know as soon as I do.  Right now my prayers are for Missy, she is such an awesome woman who has survived not only childhood lukemia, but beat hcv and now dealing with another major illness, I just feel blessed to be part of this fellowship and pray to win the battle.  min

[MissyMouse]

They are all over the counter products Mindy.  I got them all at Walgreens where the better lotions and stuff are stocked

Mouse