Open Thread for all to use enjoy

Good Morning All,

I noticed alot of posting yesterday.  Almost ran out of thread.  So use as you wish.  

I am a little nervous about shot 5 tomorrow night.  Every odd # shot kicks me hard.  My third dropped my levels to aniema starting.  I am worried about 5 bringing it the rest of the way down.  I know I shouldn't stress before hand, but I seem to follow that pattern.  I will still take the shot though.  Hoping that getting my son ready for his first winter formal today will keep my off the matter.  

Friole:

Did not want you to think I was ignoring your question the other day.  You asked if I had my ANC; I have looked and looked through out my labs and can not find it as  ANC or absolute neutriphils.  I even had my husband look.  Could it be listed differently and I just don't know what I am looking for.  Sorry, for the delay.

Have A Great Day All,

cajun

[jmjm530]

I just go the "your Copegus is no longer on your drug plan's formulary list" from my mail order pharmacy. This is new for 06 because last year no problem. I know Goof and some others ran into this problem. Any luck getting it resolved.

I know they're supposed to be the same but I do like to go home with the same gal I took to the dance and that's Copegus. I have emailed my NP the same asking them to pre-cert Copegus. I'm sure she thinks I'm being neurotic about this but, hey, what's more American than brand names.

-- Jim

[anise]

Vegas777, you asked if I had fatty liver.  I didn't see it on the report that I got, so I am assuming I don't have it.  I read your post earlier and read that you are concerned about gaining weight because you have fatty liver.  Since you are a good weight, do the doctor's know how you got the fatty liver?

Tomorrow is my first day shot, at 9:30 am - that was the only time I could get to see the nurse who is helping me.  Is it o.k. to extend the shot next friday to the evening instead of early morning?  I am not sure how sensitive this stuff is.  Thanks.

[friole]

On Neutrophils --
All my lab reports are at home.  Tonight I will look at how the labs title it.  Usually on a CBC, the red blood cells are first (RBC) and following that, all the bloodwork pertaining to the reds.  Then the whites will be listed (WBC) and under that all the white blood cell info.  There are 5 kinds of white blood cells - those are listed next in percents and they all add to 100% (Neutrophils, Lymphs, Monocyctes, Eos and Basos). On my labs, I think absolute neutrophils are next.  look for  (maybe) NE.  The range will be stated as (about 2.0 - 8.0 or maybe 2000-8000).

mom4 2 --
Congratulations on your decision.  I chose Friday for shot night so I could recover over the weekend.  I am on #28 and have never had a shot reaction.  I have never had flu like symptoms and long ago stopped taking the tylenol before my shot.  The first few weeks I was full of energy on the next day.  My low day seemed to be the Thursday before shot day. Now that has all evened out. So, I don't know.  If I had to do it over, I would still pick Friday night.
A note on Candyland on tx...........(1) dump all the single color cards - keeping only the double colors- makes the game go faster.  (2) keep control of the deck only passing it the child to take his card.  (3) Take all the special cards (particularly the princesses if you have a girl) and reshuffle those into the deck you are dealing from so they can be used over (this is the reason for #2).  I play with my grandkids (5&6) all the time and these simple rules help a lot.

I will tell you what is wearing me out  -- gson has just learned to ride a 2 wheel bike without training wheels but he is not good enough to be in street by himself. (His bike stays at our house because they live in an apartment) The running beside him wore me out (the anemia) and I get so cold outside (also the anemia).  
friole (also called nanna nut)

[FlGuy]

During tx I was on 3 diff brands of rebetol. Pharm gave me what they had at the time. Tx meds are 'like a box of chocolates...'
The proof that all brands are equal is that they all made me fee like crud. You must be nearing your last Rx, esp if you intend to ramp down the riba.

[jmjm530]

OK. If there's absolutely no difference, I'll trade you my generic riba for your Copegus. And I'll a also throw in some generic whiskey for some Crown Royal.

Oh...forgot, we don't do that sort of thing anymore. :)

-- Jim

[Forseegood]

wow, really good to hear that you've been doing so well on treatment, inspires the rest of us that for many people it is doable. I remember talking to you before you were going to start,if I remember correctly, you go to Cedar's too. Anyway, how is the hair and teeth situation? I know, not the most important aspects but I'm curious...I guess it sounds like you haven't experinced anemia either, can you talk about anything positive that you've been doing? other then the fact that it sounds like you have a really good attitude, and being a mother, guess that's essential...

I myself have just started on the anti d's, Celexa, a little strange, but doable I guess so far, anyway, thanks so much for sharing your experiences....

[jmjm530]

Fl said:The proof that all brands are equal is that they all made me fee like crud.
---------------------------
OK. I feel a little better now. But if the new stuff doesn't make me sick, I'm, gonna return it.

-- Jim

[friole]

Me too.  The generic Riba had a co pay of only $15.  I took them back and got the Copeg which, because of the generic availability, went up from a $30 copay to a $45 copay.  I admit it -- I am attached to those cute little pink pills and they fit so well into the Roche-provided 7-day morning and evening pill box.  I worry -- what if the new pills will not fit in the box?  What will I do then?? So a bought a month of time, but, depending on board reaction to the generics, I may change over next month.  

BTW - I love your mothra tales and your ability to HepCize all topics.  Tis truly sad that you got the hardest to cure version - maybe you could try the generic riba on them first.

[FlGuy]

Good luck. Hope it goes well for you.  I don't think there is a problem in moving shot 2 to pm, if shot 1 was in am.  Where it may take more consideration is if you intend to move to a different day down the road.  A while back there was some discussion about moving shot days.  I think the opinion - that someone brought back from a doc- was that if you are going to move a shot day, do it gradually over a few weeks and then settle in.  Adherence to the med schedule is important.

[vegas777]

I have no idea how I ended up with fatty liver, I was never a drinker, never had a weight problem, well I take that back, I gained about 20 extra pounds when I first found out I had hypothyroid but that isn't a factor anymore, but - that said, they now say I should loose 20 more pounds before I start tx in order to give myself the best odds going in to make the SVR, if I do that I will be a stick - I think fatty liver may be due to the thyroid issues but I can't be sure, and the Doc didn't have much input on it either....

[vegas777]

I had asked you in a previous post, guess you missed it, about your thyroid while on tx...I too am hypothyroid and I was wondering how if at all your TSH levels changed

[andyarundel]

The only complaints I have seen over the years is some have allergic reactions to some of the bonding agents used in the generic version of some meds. The active ingredients must be the same in both the generic and the patent version. It would not surprise me to find out that those who held the Ribavirin patent or a license to produce Riba also manufacture the generic version

[FlGuy]

Just took a look at Rebetol's (Scherings)ingredients.  Looks like lactose is used in the manufacture process.  Wonder if some folks' gastro disturbances can be caused by that - if lactose intolerent.

[mom4two]

Thanks for all your comments.  It's amazing how different the reactions are.  I think I'll do Friday in case I need the full 2 days of rest.

      FLGuy-Thanks for the laugh.  I don't think the kids would enjoy bread and water for their lunch, but that still might happen.

      Friole-I have already removed cards from the game.

      HepCinLa-WOW how amazing things are going for you.  It's really inspiring. Hopefully I could be half as lucky as you.
  
       Cuteus-I didn't think you could change the day of the shot.  This is why I'm finding it such a decision.  Was there a medical reson or a choice you made?

Thanks again to all
Lori

[jmjm530]

I was torn between taking the shot Friday (screwing up the weekend) and Wednesday (enjoying the weekend.) I ended up with Wednesday, but also because I wanted to make sure the day after my first shot. my doctor was not playing golf in case I needed him. LOL.

Truth is you can't predict which will be your good days and bad days. There were weeks when the first couple days after the shot were the worst, some weeks every day about equal and lately I've found that I feel the Peg the most on weekends, meaning the 3rd and 4th day after the shot.

This delayed reaction is not uncommon with Pegasys, and some report their worst day right before the shot and their best day right after.

There's always the dart board method. :)

Congrautlations on starting treatment and may every day be a good day for you.

-- Jim

[jmjm530]

You know, I was real proud of myself around 1975 when I bought a genuine *Rolux* watch from the back of some stranger's van for $20. It looked like a million bucks and kept time great for at least two days.

So I guess there's no reason to be concerned as the box of generic ribavirin says "rebevirin" and appears to be made in Taiwan. Thanks all for the reassurance, I guess I was worrying over nothing.

-- Jim

[NYgirl]

I don't know how old your kids are but mine are a bit older now...(15 & 17) and I tell them that Saturday is my "day of rest"...regardless of whether I"m dying with sx or just a bit tired.

That way I get a day to rest my body.  Even on the times we feel "fine" we are running at about 80% less than we would normally.  

Of course...I don't leave the kids on the street but...they understand that i'm under the weather and let me have my time.  That way every single weekend I get something I've never had in all of my life...a REAL day off! Not a day off from work where you are running to the shopping center and to buy sneakers and to do laundry and get dry cleaning and buy gas and go pay bills...and then come home and cook and clean etc. etc.

We get a pizza or even Mickey D's...the kids don't mind and we eat on paper plates and watch a movie.

IT IS SO WONDERFUL I NEVER EVER let on that I'm feeling "good" even if I am.

Unfortunately with this disease VERY QUICKLY after you start tx people seem to "forget" you have it sometimes.

When I first started nobody could do ENOUGH for me...I was like a pregnant lady in the first few minuts where the husband finds out -- oh sit down I'll get you tea!  Now I could be dying of dehdration wasting away and nobody would offer me a glass of water.

So this way - I am happy when Friday night comes because I know I don't have to do a thing on Saturday!

[Tallblonde]

I'm glad to hear you're sailing though treatment so well.  If I hear more accounts like yours, I'd be getting in line for treatment, that's for sure!  I hope your good fortune continues and that there's an SVR at the end of the line.  Best wishes to you!

Susan

[cuteus]

no big reason to change the day, merely convenience. You can change the shot day by increments of 12 hrs. Mine was Tues Eve, so next time I took it Tues Morn, then Mon eve, next Mon Morn, until I ended up with Sunday. For a few months the time I felt the worse was the days BEFORE the shot. go figure.
good luck

[dyce]

Hello every1.Was wondering,pegasy is flatdosed and peg-intron is weight based,do both come in prefilled reddi-pins type syringes?Also thru some research it seems the peg-intron has higher Svr rate and lower relapes.I was just wondering if this is really accurate.

Beagel ,good news on anemia shot.Ha where are you flying to?

Dyce

[jmjm530]

Not sure why one is flat-dosed and the other weight based -- but because of this fact, some doctors take a patient's weight into consideration when prescribing. A good case could be made for light person to take Pegasys and a heavy person to take Peg Intron. Frankly, both coud be off-labled dosed but that appears to be the exception.

Peg Intron comes with a redi-pen and Pegasys with in a pre-filled syringe. Possibly you can order both in vials but not sure. I don't believe Pegasys has anything similar to Redipen but as many people who like Redipen, others like a more traditional syringe.

As to SVR, depends who you talk (or whisper to). It's controversial but I've heard the same thing -- of course, from Peg Intron big shots. LOL. Personally, they were somewhat convincing and if I had to do it all over again -- and from other stuff I read -- I think I'd try Peg Intron instead of Pegasys. This is an *opinion* folks. Gotta make sure an add that for these controversial topics. LOL.

BTW I think you'll find most of us on Pegasys but that's partly because of Roache's marketing campaign to the doctors and most of us, self included, treated with whichever Peg my doctor was using.

-- Jim

[dyce]

Ha thanks.I'm pretty sure they use pegasy where I doctor,I just wonder if it will be a big deal to them if I ask for the peg-intron.I weigh 195 pounds,I'm not fat but I weigh more than the average Joe at 5ft 10 in.Doc appointment Feb 8th so we'll see.

Hope your good today and are winning the war on the moth invasion(LOL).

Dyce

[jmjm530]

Even though my med team does trials with Pegasys and use it for just about everyone, when I asked about Peg Intron they say the  the choice is mine although I noticed an absence of enthusiasm in their voice. LOL. You could always feel your people out, I just like what I hear about Peg Intron -- but maybe it's just the peg is greener on someone else's treatment.

Regarding the moths -- after spending too much with the exterminator who did what I considered a quick and sloppy job based my research -- I'll probably be ordering my own professional chemicals (and a good mask) via the net -- if I don't get SMR (sustained moth response) by week 4 which happens to be their cute little  breeding cycle.

The only good thing is that the whole situation forced me into a a house cleaning/throw away mania which was long, long due to this year's couch potato status.

Ever feel like thowing away EVERYTHING. That's my current mindset. LOL.

-- Jim

[cajunlady]

So Sorry, and yes I do miss some post; my bad.  I get frustrated trying to read and can only go so far before the eyes blurr.

My thyroid was 1.0 before treatment; I was on synthroid 75mg.  After thrid shot most levels dropped to begining anemia; that included my thyroid to 5.10.  I called my Endocrin and sent over all my records to him on treatment.  He immediately called me back that day and upped my synthroid to 88mg.  I am glad that I called my Endocrin; because my Hep doc, I guess thought it was okay. NOT. I have a goiter right smack dab in the middle of my throat and I do not want it to grow. So if you have an Endocrin please let him know what is going on with you as far as tx.
Good Luck on that; if you keep them in check; I thing it will help with the tired feeling.  Not all of it; but some.

Cajun

[vegas777]

how often do they check your TSH now?

[mom4two]

Hi all,

I have a question for all on tx.  I've made the decision to go ahead with tx.  Now antoher decision to make.  When to take the shot.  Everybody says that for a couple of days after the shot you have "flu like systems."  What does that mean exactly.  If I take the shot on Friday night my husband will be home on Sat. and Sun. to take care of the kids.(ages 3 and 5) If I take the shot Sat. night I'm able to have a day with the family without "flu like systems". How much energy am I going to have on Monday.  Will I be able to make a couple of pb & j sandwiches and maybe play a game of candyland and change a couple of diapers.  I know everybody reacts differently (boy do they) but if I can get an idea from others I would apprectiate it.  Thanks to all.
Lori

[cajunlady]

Before tx I was checked every 6 months. My Hep doc will check it everytime we do labs.  Although after seeing him friday when my levels came back lower he did not schedule me to come back until Feb. 20. YIKES. I thought he should have scheduled me a little earlier than that since my levels were starting to drop.  Endocrin doc just asked that he gets the results each time and if he feels more labs need to be done on my thyroid he will ask me to come in. He did mention that he will probably have me come in before 6 months now, he will wait for my labs from Feb 20. and then make that decision.

cajun

[NYgirl]

I take my shot on Friday so I have off on Sat and Sunday.  NOT EVERYBODY AT ALL get the side effects at first.

As time goes by we deal with different side effects at different times during treatment.  There is no rule on who gets what and some people don't get ANY.

It's wise to give yourself a day or two to recuperate just in case but it's NOT always necessary and don't let anybody tell you otherwise or they are wrong.

You very well could be one of the lucky ones!

[vegas777]

sounds like you got it all covered, that's good...I am concerned about it because I have fatty liver and I can't afford to gain any weight should my levels change...I take .75 synthroid now and have only had a few dose changes...

Thanks for info and have a great day!

*dip*

[Upbeat]

Kinda off subject. I noticed on the Gov trials page that the phase II trial with vx-950 and peg with riba is only 12 people. I thought with phase II the trial was with a couple of hundred people. Have the rules changed?  Anyone know?

                                                         Ron

[vegas777]

I know that PhaseIII will only have about 15 people total in Canada, money is an issue...Vertex is a small company, not like Scherring with deep pockets...

[creekdweller2002]

I am not very confident in the current Doctor or his office. Can anyone give me a good link to find a Doctor that specializes in HEP C in or around Houston TX. I actually live about 50 miles south of Houston but if I had to go to Houston to get a qualified Doctor I could. Thanks

[FlGuy]

I used Fri nite so that I would be functional for work on Mondays. FLS, for me, were chills, sweats, dull headaches, joint discomfort, spaciness, lethargy, tiredness (naps Sat and Sun). As Jim says, you mileage may be different. As for the PB&J, I would be likely to forget two of the ingredients on the weekends. Candyland would be ok if you play kid rules (kids win). If you are Candyland-competitive play by yourself.  When you begin, set some expectations for hubby for his weekend support. As for diapers, have your hubby change his own - doting on the kids is a good way keep your focus on the kids and distract you from the way you feel.  Can't over stress the importance of a supporting spouse and others (family, friends, church etc). Good luck, tx is as much for them as it is for you.

[Fisheress]

I too live S. of Houston in Kemah.  I am currently in a study at St. Lukes liver Foundation and Baylor College of Medicine.  I get great care in this study but if you are not interested in a study (free) there are some wonderful Doc's there at the Liver institute.  Dr. Galati is one of them.  Check it out!

Fisheress

[cuteus]

I treated for over a year and I always took the shot on tuesdays. That is when I first took it at the drs' office, and it stuck, until I moved it to Monday. I took ibuprofen when the flu stuff started and saw no reason to change the day to the weekend. My poison was Pegasys, which many say has easier sides.
Unfortunately, there is no way anyone can tell you how you will react to the first and subsequent shots.
good luck on your choice

[HepCinLA]

I have two children ages 4 and 2.  Before starting treatment I had the same concerns as you.  I envisioned being so sick that I'd be unable to get out of bed for a whole year....WRONG!

This Friday will be shot 22/48.  I am busier now than before treatment.  Between taking my kids to school, working at their school three times a week, driving between swim lessons, basketball lessons, soccer lessons, fund raising, food shopping, cooking, cleaning, bill paying, etc.  I barely have a second to sit down.  

I didn't experience those flu like symptoms.  I take my shots, Friday afternoon.  At most I may need to go to bed early (9PM) on Friday and then maybe an hour nap on Saturday but that's about it.

Having kids keeps you on your toes.  

[NYgirl]

I'm very thin and I'm on the Peg-Intron & because I have a double (combo) genotype of 1A and 1B and am on the highest dose available on the pen. Maybe. I don't know why I am on so MANY meds (plus the 1,000 Riba that I ASKED to be upped to LOL).  ;-)

The pens are really too easy to use. When I was first starting I was PETRIFIED of giving myself a shot of any kind but the syringes REALLY scared me.  I was lucky they put me on the P-I. They had me come in and showed me how to do it the first time (took five minutes).

Later on...when I needed Epogen for the anemia I was so used to sticking myself with that little teeny tiny needle - that when I had to use a syringe it didn't scare me at all.

So it's kind of like (to me) I started learning how to write with pencils and moved on to pens or something.

Either way I am sure once you do it a few times you will be able to do it no problem. Just make sure you READ THE INSTRUCTIONS each time so you don't make a mistake and it will be cake!

[strator]

As far as the shot day I chose Saturday night figuring I'd have Saturday for any  home chores and available to do something with the 14yro.He thought I should do it Fri night so I'd be rip roaring to go to work Monday because he gets nervous when i ain't bringing home da bacon. After the first few weeks (Sat w/be 20/48) I noticed the shot had less effect on my schedule. In fact I usually get more done on Sunday than any other. Lately I have been more achy on Mondays but still it's not that different than the rest of the week.

A couple of thoughts-
1. Tell your family that taking naps is  part of treatment. I try to plan mine into the day.
2. As Ny girl mentioned it can get old for even the supportive ones around us. I think one problem here with that is I somedays go to work and come in all dirty and dusty from construction, make everyones dinner, then head to a meeting and maybe shopping, do most of the chores and generally feel okay-so they have a hard time understanding when I suddenly cr** out even when I tell em I feel lousy. And the energy can go without a moments notice all through the week. Also people have told me I look younger on tx than a few years ago. (Course those were boozing days.) So they get puzzled when I say I'm not feeling well. The only consistent thing I've noticed about tx and the sx is they aren't consistent. Somedays (or hours)I'm fine, oter days the itch, the rage, the aches and fatique.just when I get use to feeling good say on tues-it changes. Just when my attitude is going a long fine, i get a run of some really blah days.
Doable yes...a wacky ride yes. The fact everything changes so much is what helps me. I know the aches or itch or crankiness come and go so it's not 100% bad.
Be Well,
Don

[Oreos]

Peg-Intron or Pegasys?  Same question I was faced with over 2 years ago.  (Former 1A 48/48) My GI prescribed Peg-Intron to all his patients.  After doing quite a bit of research, and recommendations from this board, I asked my GI if I could do Pegasys.  Why?
- Fewer side effects
- Pegasys stays in the body 7 days plus.  Studies show (I'd have to dig through my archives) that Peg-Intron can start to lose potency in the body by day 5.  
- I tried treating with Intron-A (Peg-Intron predecessor) and had to quit after 2 mos due to severe sides.

For me, the Pegasys product was far superior and easier to tolerate.  Of course, we all have different body chemistries, but that's my experience.  I met with my GI a couple of weeks ago and he told me that he had switched ALL of his patients to Pegasys as he's been seeing better results and fewer sides.  

In the past 2+ years, Shering Plough has lost about half their Peg-Intron US market share to Roche's Pegasys.  It's not just about price.  Whatever studies you read, be sure to understand who's funding the study...