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Hepatitis C Community

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2 more to go also

by sofarsogood, Apr 29, 2004 12:00AM
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.
Member Comments (20)

by Tony-z, Apr 29, 2004 12:00AM
To: Gaffer
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

by ral, Apr 29, 2004 12:00AM
To: Gaffer
Good Job



Please keep us posted



Sincerly



Bob L

by snook_man, Apr 29, 2004 12:00AM
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

by scruffy, Apr 29, 2004 12:00AM
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.

by gonagetbetr, Apr 29, 2004 12:00AM
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

by cuteus, Apr 29, 2004 12:00AM
To: gonagetbetr
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

by lost and confussed, Apr 29, 2004 12:00AM
To: cuteous
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

by cuteus, Apr 29, 2004 12:00AM
To: lost
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

by Honey15637, Apr 29, 2004 12:00AM
To: Cuteus
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.

by cuteus, Apr 29, 2004 12:00AM
To: honey
??????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?

by lost and confussed, Apr 29, 2004 12:00AM
To: cuteus
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?

by Honey15637, Apr 29, 2004 12:00AM
To: Cuteus
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.

by cuteus, Apr 29, 2004 12:00AM
To: honey/lost
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 wh