Last shot -When do the side effects go away??

[indyjo]

Hi all. First let me say that I have counted on you guys for  more than a year. I don't post often, but read daily and I truly admire the knowledge and insight expressed here. I did shot 48 on 9-9 and then at appointment was told that I was only  on shot 47. Well I did shot 49 on 9-16 then received a phone call from study nurse (I've been a participant in the IDEAL study)  telling me to stop the ribaviron immediately as I had done one shot too many. Gladly!!! I got hit with the mack truck after the first few shots, but I have to say that the ribaviron side effects have been really hard to tolerate these last few months. I feel less depressed already, but am still feeling the anemia (last count - 9.5). My question is how long does it take for blood counts to normalize.

[LvdByGod]

HI FAIRYGAL, how are you doing tonight??? i hope you're well!!!

i wonder if i could add some comments on to a couple of your comments, i hope you don't mind fairygal...

ALSO,HI ZOBEN AND WELCOME TO THE FORUM!!!...

first zoben, you really don't know how fast it will take you to get worse if you wait for treatment. you could be one that moves quickly, average, or one that moves very slowly...with each one of us we do not know for sure how fast our liver progression will really be...so we really must take necessary precautions in case we are moving quickly...

it is true that, in general, the hepatitus c virus moves very slowly and takes years to get to cirhosis...studies suggest that the average is about 20 - 30 years infected until cirhosis... but that is not always the case...some folks move through stages very rapidly...i once heard of a guy who moved from stage 2 to 4 within a couple years...i don't know him personally though so i'm basing this on his post... i'm also asuming he is being truthful. i don't know for sure about his case but based on what i have heard here and at other sites over the years, is that there are definately great variations in the speed of liver damage for different folks...

so YOU really don't know how fast YOU will progress...just like your dr told you...

anyway all that aside... zoben you said, "THE DOC SAID MY LIVER IS INFLAMED AND SCARING". bad news is that cirhosis is considered "scaring"...now, befor you freak out, perhaps the dr was just using that term loosely and didn't really mean "cirhosis" but instead meant advanced fibrosis which can lead to cirhosis scaring...also, to make matters more confusing some drs use the term "scaring" for both cirhosis and fibrosis...drs are lazy sometimes and won't go into detail unless pressured...i know that's crazy but it happens! make sure you have a knowledgable gastrointerologist or preferably a hepatologist...

here's what i would do if i were you...i would get a copy of my biopsy report and post it here, word for word, and we can help you figure out what stage and grade you really are...ALSO, be sure to look it over with him at your next dr visit or call him asap and "MAKE HIM" :O) explain in detail to you what each comment means and ask him directly what stage and grade your liver is in...(it should be stated as between 0 and 4 fibrosis and 0 and 4 inflamation... known as "stage and grade" on most biopsy reports...

the higher your numbers are the worse your liver is damaged and inflamed...if you do have "cirhosis" (make him clarify this) and ask him what level of cirhosis you are at..."cirhosis" has its own stages...

a hepatologist is the best type dr if your grade/stage is indicating cirhosis...hepatologists are really necessary for advanced disease in my opinion...

the last comment i would say is that i would agree to go ahead and live life and enjoy, but do it while "on" treatment if you find out you have a grade/stage of 2 or greater...most knowledgable drs agree that this is the point to to start treatment in order to be the safest...

if you find out you are a stage/grade of one or less than you can comfortably afford to wait a bit to see if a less severe treatment option becomes available...the standard treatment used now is Pegasys and Copegus or Pegintron and Ribaviron...

always remember if you do decide to wait for whatever reason, be sure to get a biopsy every few years to make sure you are not progressing along with yearly scans like a ct or ultrasound and frequent blood checks...this is the safest way to wait...

whatever you do "make" that dr give you the details you need to make the safest decision for yourself...and if you are unhappy about his knowledge or input try and find a better doc.

we are all anxious to see your biopsy report. hope you can come here often for a great place to get opinions on hep c and support during treatment...you know none of us are drs just regular folks giving our best advice to you...none of us knows everything about hep c or treatment but we all try to help the best we can...

look forward to getting to know you more...

sandi

p.s. fairygal i love your name!

[johnisme]

Thanks for posting the study. Sinced i have cirrhosis plus ive never treated before i won't be able for this one. Let me know how it goes with you as i will let you know with me. Again thanks and best of luck to ya.

[miked]

Dr. Kwo mentioned that IU Med Center will be a site for Schering's new PI and that they will be recruiting in September.  

Schering's been keeping this very quiet and I suspect that they are gunning for VX-950 and NM283.  I'm watching this one closely....Schering's a very large pharma company with big resources and is leading the HCV tx race so far with PEG-Intron.  Below is the clinical trial detail.  Let me know how it goes for you.

Purpose

The primary objective of this study is to determine the safe and effective dose range of SCH 503034 in combination with PEG-Intron in adult subjects who have chronic hepatitis C without cirrhosis, and who have failed an adequate course of combination therapy with peginterferon-alfa plus ribavirin. A secondary objective is to explore whether ribavirin provides an additional benefit when combined with PEG-Intron plus SCH 503034.
Condition  Intervention Phase
Chronic Hepatitis C
  Drug: SCH 503034
Phase II


MedlinePlus related topics:  Hepatitis;   Hepatitis C


Study Type: Interventional
Study Design: Treatment, Randomized, Double-Blind, Placebo Control, Parallel Assignment, Safety/Efficacy Study

Official Title: PEG-Intron/REBETOL Vs PEG-Intron/ SCH 503034 With and Without Ribavirin in Chronic Hepatitis C HCV-1 Peginterferon Alfa/Ribavirin Nonresponders: A SCH 503034 Dose-Finding Phase 2 Study

Further Study Details:

Expected Total Enrollment:  300
Study start: September 2005


Eligibility

Ages Eligible for Study:  18 Years   -   65 Years,  Genders Eligible for Study:  Both
Criteria
Key inclusion criteria:

Documented infection with chronic hepatitis C (CHC), genotype 1.
Documented failure to respond to an adequate course of treatment (minimum 12 weeks) with peginterferon-alfa plus ribavirin.
No evidence of cirrhosis on liver biopsy.
Results of physical examination and laboratory tests within specified ranges.
Abstinence from use of abused substances.
Key exclusion criteria:

Women who are pregnant or nursing a child.
Patients with cirrhosis, co-infection with Hepatitis B or HIV, and African-American patients.
Previous treatment with any HCV polymerase or protease inhibitor.
Patients who relapsed following response to previous treatment.
Evidence of advanced liver disease, or liver disease from a cause other than CHC.
Pre-existing psychiatric condition.

[LvdByGod]

hey so nice to see your post again...CONGRATULATIONS ON BEING DONE,FINISHED,FANITO...YIPPY FOR YOU KIDDO!!!

now the hard wait...ohhhhh, i'm so scared myself to think of stopping in a few months...oh well...i'm sure i'll get over it after my first shotless night and ribless day!!!:o)

i didn't have time to read the others posts but my thoughts are why not start procrit to get back on track? 9.5 is way low...i'm not sure why they didn't give you this sooner?

also, it does take at least 6 months for this stuff to clear your system...remember the warning on the insert says we must wait at least 6 months to get pregnant...so ya know it will be at least that long...

i would press for the procrit now that you are out of that study...or do they still monitor you and have some reason they can't give it to you? this is probably why you didn't get offered the procrit while on the study...might mess up their study results...not sure? press for the procrit kiddo...

i hope and pray you're back to normal sooner rather than later...nice to see you again indijo,

sandi <:0}~  

[1fairygirl]

Oops, sorry about that, I forgot to post the rest of my post to you !!  Brain fog is in high gear lately!
Don't dispair, this is a very slow moving disease.  The chances of you getting worse while you wait for treatment are really quite low.
Did you get a copy of your biopsy results.  If so, there are numbers there which say what stage and grade your liver is.  If not, most of us do get copies of all our tests and labs and you may want to ask for that.  That way, you know exactly where you stand.  Your doctor didn't say that you have cherosis, by the way it sounds, so you will be okay.
Go ahead and live life, just don't drink any alcohol and don't take any iron supplements.  There are other suggestions which I'm sure others with less brain fog than I can think of today.
Let us know what you find out and ask and research to be as informed as possible.
Smiles, Sue

[nyhepc]

i would think the returning to normal blood counts might be an individual thing. i was taken off tx d/t to anemia. hgb, hct, plt all came up in couple weeks. aftr 4 wks, wbc still at 2.2 and ANC still<1000. congrats to you on finishing!!!

[cquest]

Re the tattoo swelling...I have that happen when I am in the sun, but then again, I also get a rash in the sun...Doc told me that the ink is an irritant to some people and your body is trying to reject it...I bet the tx is making your body extra sensitive to foreign material such as the tattoo ink...Too bad those of us that are extra sensitive don't know it until it's too late and you allready have the tattoo...
Cin

[Lynne5477]

My blood counts came back quickly, however, at 1 month post, my Hgb was back in the normal range but not back up to my pre-tx level yet.  I began feeling better and having more energy almost immediately.  I ride bikes so I could judge my energy level just by how well I was riding and how my average speed was improving each week.  Even my husband was surprised at how fast my energy was coming back.

Be patient for a few weeks.  I know it's hard because you want to feel better NOW but it will come.

Good luck.

[scruffy]

Just take your time and enjoy feeling a little better every day. Happy days! frank

[1fairygirl]

Laika,
I think it's the hepatitis that causes the swelling.  I've had that happen even before I got on treatment.  It's been more pronounced on one tattoo than another, but the one does have more dark ink.  Kinda weird feeling, huh?
Smiles, Sue

[johnisme]

Hi mike glad to hear from you, My next appointment with Dr. Kwo is in oct. Not sure what trial study he has in mind. Do you know anything about the protease inhibitor trial? I was wondering if i should bring that study up with him. Thanks John

[ZOBEN]

HELLO EVERYONE
WAS SURPRIZED TO SEE A FORUM ABOUT HEPATITIS, FOUND OUT I HAD IT ABOUT A YEAR AND A HALF AGO. THREE MONTHS AGO I HAD A LIVER BI-OPT, THE DOC SAID MY LIVER IS INFLAMED AND SCARING. TO ME THAT DOES'NT SOUND TO GOOD, I ASKED HIM HOW LONG I COULD LIVE WITHOUT THE TREATMENT. HE COULD'NT ANSER THAT, JUST SAID EVERYONE IS DIFFERENT. I AM ON THE WAITING LIST FOR THE TREATMENT, CAN'T AFFORD TO PAY FOR IT. I HAVE'NT BEEN ABLE TO WORK FOR 12 YEARS, DUE TO A BACK INJURY AND BEING ON DISABILITY.RIGHT NOW I'M PRETTY SCARED, AND DEPRESSED.KIND OF HARD TO MAKE PLANS FOR THE FUTURE, IF YOU DON'T KNOW IF YOUR GOING TO BE AROUND. THANKS.
                                       ZOBEN

[miked]

I am also a patient of Dr. Paul Kwo at IU Med Center; he really impresses me with his direct communication and up-to-date knowledge about HCV.

Have either of you been asked to participate in one of the upcoming protease inhibitor trials?

Mike

[indyjo]

I asked for and received stimulents to address fatigue from the anemia. My nurse felt that this would not help and actually she was right. I was just more alert and more aware of  the fatigue. I was impressed though with their willingness to let me try it.

[johnisme]

Thanks for your help, i met with Doc. Kwo yesterday, He seems to be good and easy to get along with. I have to ask what is psycho-stimulants? Thanks again, John

[indyjo]

Yep you got it. I am in the IDEAL study through IU med center with Dr. Kwo. I am in one of the peg-intron legs of the study, and therefore not sure that I received the 1.5 dose vs. the 1.0 dose; however I cleared at 12 weeks and remained clear. There is also the chance that you might be in the full dose pegasys leg of the study of course. I was satisfied with the doctor's willingness to prescribe medication for side effects (pain killers, psycho-stimulants, anti-depressants, etc.); however these medications are not free through the study. My nurse gave me a pager number to use at night and over the weekend if needed and at one point saw me on a Saturday to give me a shot for extreme nausea. They followed standard protocol when addressing low platelets, Hgb, etc. My platelet count dropped to 40 something and they lowered my peg for some time. My Hgb dropped to 9.5 the last few weeks after staying steady at 10.4 for months and I chose not to pursue procrit as I was afraid that they might drop my ribaviron dose instead. They got me in and out quickly, returned calls, and kept me informed. I'm a happy camper at this point. Good luck with the study and keep us informed. I'm happy to answer any questions.

[johnisme]

First, glad you made it through tx and hope you are svr. Sorry i can't answer your question but im sure there will be somebody soon that can help. I assume by your nic your from indiana?? If so was your tx at IU? As i will be going there for the ideal study after i get my bx results. If i may ask you how happy was you with them and was they easy to get ahold of if you needed to? And was they good about running test and giving you the meds for side effects, like procrit?  Thanks John

[Laika]

I only did 24 wks, but the beginning of return of energy was one of the quickest things to happen.  I felt better in a week after taking the last pill, and steadily better since then.  There are still a few other things going on...my hair is still falling out, for instance.

My tatoo has "welted up" where the heaviest lines of dark ink are...very weird...feels like it's embossed.  It is over 30 yrs old, with a a freshen up about 8 yrs ago.  Has anyone ever had this happen to them?

Laika