2 more to go also

[sofarsogood]

Hey all, it is the ER nurse Gaffer here. Saturday marks week 22/24. Yeehaa. I lost 23lbs, feel like dudu several days of the week, am on short term disability. I miss making mad passionate love to my wife. I miss being able to exercise and do my activities of daily living without becoming short of breath. I will not miss that gut-rot ribaviron. I will not miss this stupid rash that itches insachably. I miss having a meat and potato diet.

Two more weeks on this treatment regimen, almost time to detoxify. Praise You Lord for being there for me. Thank you all for the encouragement.

The following is my list of meds since starting:
Ativan (up to 2.5mg day, good sleeper)
Prilosec (every now and then after developing a bad gastritis)
atarax (aka vistaril)
Augmentin (for these little infections I never got before tx)
iron supplement twice/day
zofran (worst constipating antiemetic I've tried but it works super)
phenergan (antinausea-unless IV didn't work for me)
aveno body wash, hot hot showers, and polyester clothing for the itch->cotton tears me up.

Never did the antidepressant thing. I think I needed one but no history of such so I held off. I cried so much on this treatment. Took three trips to ER, tanked up on IV fluids from my friends 6 times while at home (when dehydrated)

I'm crying to you all, I know it. I will never ever do this treatment again. If I do not obtain SVR status, so be it. I don't drink, I exercise like a fiend. I will get what I can out of life with God's direction and help. Bye, I am going back to the concentration camps where I fit in.

[Tony-z]

Gaffer

Congratulations on a very hard job that you have done so well. In a way thats what TX is a job that we must do to try and heal ourselves. I dont think you will relapes and after you've wash the drugs from your body you will feel so much better.
Keep up the faith as it is the trust in the lord thatprovides the answers!


                TonyZ

[ral]

Good Job

Please keep us posted

Sincerly

Bob L

[snook_man]

Hello to everyone!! I am the 26 yr old withe hep c, had it since birth and have been reluctant to tx.. Well, meds have been ordered, and I will take first shot on May 20.. Right after my last day of school..
I just wanted to post phone # that was posted in the Miami Herald yesterday.. It states, Hepatitis C sufferers, get paid $50 to answer 60 minutes worth of questions and give your opinions..I did it last night, and it did take just about an hour, and it is being done by a research company, for one of the pharmacutical companies.. They say it is drug x.. One shot a week, and two pills a day??
Hey, I just figured that we all could use the extra $50.. The phone # is 1-800-969-9235.. McMillion Research..
I will be stopping by here alot once on treatment for advice and questions, so hope to talk with many of you later.. Thanks

[scruffy]

Hey folks! Missed you all of course and worried for those in the midst of tx for a lack of somewhere to unload. I have 3 to go and then my long lost tastebuds may come back to me.True joy!
But it's really true that I miss my brain the most.Love and respect to you all.

[gonagetbetr]

wow i was just diagnosed is the treatment really that bad. I have a family to support and it sounds like you cant work or anything. I am going in to meet with the dr next week for my options I guess.
What are some good questions to ask as it seems everyone here is soo knowledgeable?
I have done internet research how can you tell if you have a good doc or not
I am sure they will all tell you they are tops in thier field
also I told a few friends about my diagnosis and was really suprised that some seem very supportive and 2 just totally shunned me
did you all tell your employers
any help will be appreciated

[cuteus]

That is the problem with coming to the forum brand new and reading once only.
  You get a better pic of tx after reading in day after day.   Not everybody gets bad sides, some get none.  You won't see them here because they find nothing to whine about...lol.  we, the somewhat needy, will be here regularly to get support and friendship.  
Hang around to get a better picture.
I am 0n shot 44/48(maybe), have been working FT throughtout, only told my immediate supervisor and a couple coworkers. My preference. Only the supervisor needs to know to account for the time off for appointments and the days when things don't feel right.  
Find out if you dr will cooperate with you in the tx of sides such as anemia or is he going to send you elsewhere.  Will he give you strong pain meds if you need them?  Have all your tests results faxed to your primary dr, as you might need his intervention if you decide to treat.
The decision to tx should come after a biopsy has been done to determine how damaged your liver is.  A big factor in my case was my age.  I can't wait for years while new TX comes about, since treatment for geno 1 is so long.
In my case I saw a GI and two hepatologists before deciding on the practice to keep for my case.
GL in your decision

[lost and confussed]

thank you so much that really helps
so what should I expect from my first visit?
should a biopsy be scheduled at that time?
what is tx?
is it the interferon rivowhatitwhosy Can't remember what it is called, or is it something else?
What is the pain from and where? Liver My spleen is already enlarged and I had a liver scan already
I dont want to bug anyone but am very curious and want to know if my course of treatment is being handled correctly
I dont have a hepatologist the doc I am suppose to see is a gastrointernist, then a hemotologist and made an appt with a pcp
( didn't have one before)
Does health insurance pay for the meds?
your help is appreciated more than you know
I hope you get better it sounds like you are almost done

[cuteus]

I remember you were geno 1 and 46, right?  There were some folks here with a beautiful list  of things to ask the doc on that first visit.  Hopefully they will come by and post that list.
TX=treatment, bx=biopsy, sx=side effects, dx=diagnosis.  The effective treatment for hcv includes some form of interferon(alpha interferon or consensus interferon) and ribavirin.  Brand names are pegasys, pegintron, infergen to name the most popular interferons.
Some folks get joint aches(even before TX) and flu like aches(ya know what that feels like). I rather have a strong med that I can take once rather than a less effective one that i might have to take more of.
You have a unique set of medical issues that need very customized care.
You must inquire of your health insurance what they will pay for, mine pays for everything, others don't.
I chose a hepatologist after the gastro only guy because I wanted a specialist of the liver, you have extra issues so an internist is a good choice for PCP. Ask your dr if he will do a bx, some don't. Will he see you monthly, do lab works regularly, intervene if your blood counts drop, what sides will he treat, which ones will he send you elsewhere for?
ok ran out of brain power...someone else will have to pitch in...lol

[Honey15637]

You have been on procrit since 3 months?  What did your numbers get too for your dr to decide on that?  And also...is that 3 shots a week you take extra and did it make you sick?  Mine have gotten lower and my dr is giving it this week and if not...wants me to reduce meds. He said procrit will just make me sick and won't really help and he has never prescribed for a patient. He just reduces meds by 2 pills.  Of course...I told him no...I don't want to do that.... but would like  to know from someone that is actually doing it.  Thanks for any info.

[cuteus]

??????what is he talking about; Procrit?  I remember some gastro problems the first week, but other than the burning when I inject, I notice nothing but higher red counts, no shortness of breath and no fatigue as the result of using it. my reading was at about 30% from 40% pre tx and 10. something, it wasnt until I complained of an unusual left chest pain that he prescribed it.  anemia can aggravate heart problems or induce it.  I take only two shots(pegasys and procrit), sometimes i skipped one week of procrit with mild negative results(weakness).  They did reduced the riba to 4 pills(800mg) from 1000, and forgot to increase it for months, until I asked them.  You got to stay on top of these guys. I hope it did not ruin my svr chances to be on lower amounts for so long.
I was more sick before the procrit than after, and that was only the first week. ask him to explain when he says "sick".  i do not get it.
2 less pills, is that a total of 800 you would be taking?

[lost and confussed]

I dont know geno type yet
Does that come from the biopsy?
I am 38 and just diagnosed
thanks for all the tips I am sure they will come in handy in the very near future.
If I call my insurance company to ask will they drop me?

[Honey15637]

Yep...I'm at the point that this guy is getting to be a nuisance and I'm just trying to tolerate him. haha  My hemoglobin is 9 and hemtocrit is 29.  He asked about chest pain and no..I don't have that.  Just noticed past 2 weeks...really tired..LOL even more so then usual if that is possible.  Yeah...he told me 3 shots a week of procrit but on other hand...he says he never has prescribed for anyone so wondering at this point if he really knows.  Yes...right now I'm at 1000 and that would drop me to 600. This forum has been great in all updates and people going through this or....otherwise...I would have no idea and would have dropped 2 pills very easily.

[cuteus]

wow, if he waits any longer you will need a transfusion, 3 shots won't help...lol. I take 40,000u/ml a week(or supposed to ), one shot.  
yikes...that doc worries me.  I am glad the forum came back when it did, I hope others pitch in to advise you.  is there another GI you can see?

lost: the genotype is part of the complete blood work the hepatologist orders, along with blood counts, cryoglobulins, thyroid, glucose, viral load, etc. try to get a hep c specialist. Your insurance will find out anyway if you get meds prescribed and need prior approval, I believe "dropping" you will constitute some form of discrimination.

[LvdByGod]

HI HONEY, i missed you durring the "break"...i hope you are well...i'm with cuteus on this one and think you need another opinion (quickly,if possible)...bring all your info and bloodtests to the second opinion dr and tell him of your concern...just to get a balanced view of things...

you are right to be concerned about both issues...(lowering your dose and your blood counts), so i hope you can get in to see a specialist/second opinion in these areas...

as for me,i would certainly feel better if i knew my dr had some experience with the blood drugs(procrit and neupogin),and not just automatically take the easiest way out by reducing my meds first...

by this point in the history of treating hcv with combo tx,i would think that these two drugs should be standard fare for interferon treatment...perhaps your dr is not up on things?!?

if he has never dealt with these meds before perhaps he does'nt understand them very well...my aim would be to keep up my dose unless absolutely necessary...(i wouldn't want to take a chance to not clear)...this would be my thinking if i was in your spot...

different people and different drs have different feelings on this and obviously it will depend on your individual case...but it is your life so you can have a second opinion if you want...

anyway, glad to be with you again here on the board...i am going to be praying for you on this whole issue...luv,lvd

[Honey15637]

Hey there (((HUGS)))  Yep...The break was hard from everyone and only to realize that I didn't have email addresses to check in on you guys!  Glad to see you back in forum this morning! Thanks for your reply and yes this is only GI here for me! ughhh~ If things continue to get bad with him and every visit is a struggle,,,I will have to make a decision to go to the best but about hour and half aways!  If my numbers don't improve this week....I will demand the procrit and see what happens. Can you imagine all the newbies that don't have this forum or all the facts and have drs like this.  My heart goes out to them!  We would all be on treatment and off treatment and so on!  I want to give this my best and of course if procrit doesn't work...then of course I would have to think of my health and drop 2 pills!  Hope you are doing great Sandi!!

[LvdByGod]

yep, you are in a situation...it would be a bummer to have to drive that far...perhaps you should take in as much information as you can find on the procrit and nuepogin...to help your dr out...let's all try to get some info to honey to help her out...

honey i will check my favorites list of saved articles and do a little investigation...i will post what i find here or if this thread closes i will put it on another post for today...i hope others will see this and be able to contribute...especially those who have been on these blood drugs before, i have not...but will try to help...

[Honey15637]

That is really sweet of you and I thank you.  Someone was kind enough to help me while forum was closed and I do have a couple of things copied for my dr.  Right now I'm trying to find where he is getting the 3 shot a week idea on procrit.  

Chev...that is so nice of you! And yes...it would be really nice for even the ones that finish up early this year to hang out so we can all get to the end "together"! God Bless!

[LvdByGod]

HONEY, YOU CAN LOOK THESE UP AND COPY THE PARTS NECESSARY TO SHOW YOUR DR...HOPE THIS HELPS YOU...CUT AND PASTE...SORRY

http://ww3.peerviewpress.com/peerview.nsf/release/232002_Managing.html   (THIS IS A GOOD ONE LOOK UNDER ANEMIA)

http://www.hivandhepatitis.com/hep_c/news/051302a.html

http://www.neupogen.com/

http://procrit.com/oncology/tools/cbc.html

there are study(s) i can't yet find that the article above refers to if i find them i will post it...hope others can share articles they know of too (that support the use of blood drugs for tx side effects)...also the first article is great and says what you want the dr to know but,it is from 2001. i was hopeing for something more recent as well...i'll let ya know...

[LvdByGod]

the 3 times a week is mentioned in the 2nd article that i posted...one time a week in the first article...i wonder what the discrepancy is...is one a different med? or is one an older way of doing it?

[twotells]

It's a shame you have to go through so much to get Procrit.  It really helped me with the anemia during the time I was on Ribavirin.  Other than a sore muscle for an hour or so, I noticed no sides from Procrit.  The recovery of the Hgb was slow and gradual- I would go up about 0.5 to 1.0 Hgb per shot at one per week.

I'm also glad to see the forum back- don't know the story.  Thanks to whomever is responsible.

Dave