Shot # 2

Took shot 2 on Friday and still no major side affects. It's strange how these medicines can affect people so differently. I have been reading about those who have had very bad times with the first shot and others who had nothing till after about 4 shots. I am pretty sure my blood counts are going to be low. The nicks and scratches I get from work take longer to stop bleeding so I know my platelets are low. Also getting those kinda red areas around any scrapes and cuts like they are borderline infected, so I assume my WBC will be low also. Since I get a little more out of breath with certain actions I assume my RBC is low also. Will get my first bloodwork this Friday so will be interesting to see what's going on labwise. Best of luck to all especially those experiencing rough times and those who don't have a good "support system" at home.

[Revenire]

Are you doing 24 or 48 weeks? The first few shots made me wonder "Is this stuff working?"

[CARUU]

I also did shot #2 on Friday.  I'm a lot more tired than before and I have some rough, red patches on my face.  I tried Aveeno moisturing soap for my face and it seems to be helping. The nurse called Friday and said my WBC is down, but that I could go ahead and do the tx.  I go in today at 3pm and will know more then.  I'm working from home today and grateful for that, at least I can work in PJ's for a while :-). caruu

[hph5477]

I'm female, 46, type 1, so looking at 48 wks treatment.
Shot #1 sx were pretty bad or so I thought; cold chills, sweats, headache; but it only lasted about 12 hours.  Took shot #2 this past Thursday, made it thru the night great. Next morn, I was SICK; couldn't even keep water down.  Lasted the entire day.  Was fine the following day with exception of lingering headache (mild migraine) and slight nausea.  The following day, both times, I just wanted to cry; after that I seem to do fine all week.  Awaiting my 3rd shot this Thursday to see what type sx I will have this time.
If anyone can provide info for help with the sx, please do so.
Good luck to everyone on treatment.

[cc2]

Hi all,
Just read an article on PC from MSN news.  I'm pasting part of this article.  Seems to be good news.

But scientists working for the German drugs giant Boehringer Ingelheim have developed a drug that could offer new hope to patients with the illness.
       Called BILN 2061, the drug targets an enzyme to block the replication of the virus. In eight people given four doses of the treatment viral loads, or the amount of virus in the blood, dropped by 100 to 1,000 fold after 48 hours without producing any unpleasant reactions in the patients.
      

[layla]

All of the things you describe are normal sides. They all come and go for me but mostly stay mild. There have been many weeks with no sx's. Hope you have an easy time.

Carru and Petey7 Glad your both doing ok. Hope it keeps up. LL

[Petey7]

I am scheduled for the full 48 weeks which they told me after I asked really means a full year because of the way the drugs are dispensed. Does that make sense? Something about calling all months as four weeks or something like that?

[Eyedeas]

Remember your water and to take the Riba with food, preferably something with fat... peanut butter, pumpkin cheesecake, Peanut Buster Parfait etc. etc.

[Revenire]

48 weeks is 48 weeks; it will feel like ten years. ;-)

----------------------------------------------

On another subject: Preliminary Data Do Not Support Hypothesis That Higher SVR Rates in Genotype 1 HCV Patients Result from Extending Treatment from 48 to 72 Weeks

54th Annual Meeting of the American Association for the Study of Liver Diseases
October 24 - 28, 2003, Boston, MA

http://www.hivandhepatitis.com/2003icr/03_assld/docs/pegasys/102703_h.html

[AK - Hepper]

looks like you do your 48 weeks and hope for the best. That's fine by me, I'm starting to get kinda burnt out on this ****, 14 more shouldn't be too bad

[DH Bill]

I had 12 wk blood draw this a.m. and I just talked to my docs nurse to ask what test they use for sensitivity and she said it was the "branch chain method" what is this?
I asked if I had a choice and she said the doc likes to stay with what he started with to show at least a 2-log drop and what insurance I have would make a difference???????????????

[quak]

I noticed earlier in tx that my cuts/sores were not healing quickly.  If your WBC gets low try talking to your doctor about other ways to bring your level up.  Keep drinking water.

Lori

[willing]

"branched chain DNA" is one of three lab technques used by testing labs to quantify VL. The other two are TMA (Transcription mediated Amplification) and PCR (Polymerase Chain Reaction). Different labs have different preferences, some, like Quest, offer more than one technique. The bottom line is you don't really care what technique they use (if you do here's a <a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12809843&dopt=Abstract">comparison</a> ). You do do care about the lower limit of detection and whether the test is qual or quant. (qual gives you a yes/no answer, quant gives you a count).

Many Drs offices still routinely order the older PCR tests with a lower limit of 500-600 iu. Getting the office to order a more sensitive  test is a nuisance several of us have run into. Find out what lab they use, go to their web site and become familiar with the test specs and test #. Then, armed with this info, go back to the Dr's office and make sure they are ordering the right test #. The difference in cost between the older, less accurate tests and the newer ones is about 300 vs 450. To allow meaningful comparison your 12-week test should really be taken at 12 weeks so it's best to do this fairly soon. Sorry about the aggravation but it's worth it. Good luck!

[LvdByGod]

THATS GREAT NEWS ABOUT THE BILN STUFF. I DID SHOT #3 AND FEEL LIKE I'VE BEEN RUN OVER BY A TRUCK! I ACHE ALL OVER MY MUSCLES AND BONES ACHE. I FEEL ABOUT 80 YEARS OLD. I WALK AROUND IN HALF STEPS TO CONSERVE ENERGY. WHAT DOES THIS MEAN? IS THIS THE SIGN OF LOW BLOOD COUNTS OR JUST TX? HOW DO YOU GUYS DEAL WITH THIS SIDE AND STILL FUNCTION? ALL I COULD DO IS LAY DOWN MOAN AND NAP OFF AND ON ALL DAY.I HOPE TOMARRO WILL BE DIFFERENT.TYLANOL/ADVIL DOESNT HELP! ANY ADVISE FROM YOU LONG TIMERS? SANDI

[DH Bill]

Thanks Will, I believe she said it was for the count not yes/no. I have to leave message and she gets back next day after 2:30.
If hcv, tx and waiting is not bad enough the county has been putting a new sewer line in our street for 2 months now. The noise and shaking of our house from the compacters and machinery is DRIVING ME CRAZY :)  :(  :)  :(  :)  :(

[DownThisRoad]

I just did shot 26 yesterday evening.  My sides kicked in on the 5th week, up to then not much.  I took a couple of tylenol for a headache once and that was it.  Started feeling ill side effects on week 6 & 7 when my rbc fell really low.  I was put on Procrit in order to continue and complete my treatment.

Drink lots of water.  When you don't feel bad or side effects, just keep going and moving forward.  When you DO feel bad and side effects, just keep going and moving forward.

Learn to enjoy the times that you don't feel bad. And don't always wait around for the sides to hit you hard.  They may not.

I am in an undectable stage and moving forward in hopes that I can kick this disease out of my system, once and for all!!

I need to do 48 weeks (and possibly) a 6-8 week extension past the 48 weeks.

[willing]

LVD: uh-uh..*that* truck. Some say it's Mack, some say a Peterbilt. It comes tearing through here at all hours - try to stay out of its away. If not, the bruises usually heal in a day or so..

Bill - I wanted to add that using the same source for VL tests is also a bit dated. Before WHO adopted the IU standard in 1999 labs reported copies/ml and there were significant differences between tests (see <a href="http://hepatology2.aasldjournals.org/scripts/om.dll/serve?action=searchDB&searchDBfor=art&artType=fullfree&id=ajhep0360s65#head3">table 3</a>. The IU standard accounts for these differences so this is no longer as important an issue.

[Revenire]

<a href="http://www.hivandhepatitis.com/2003icr/03_assld/docs/pegasys/102703_h.html">Preliminary Data Do Not Support Hypothesis That Higher SVR Rates in Genotype 1 HCV Patients Result from Extending Treatment from 48 to 72 Weeks</a>

[Tim in Tenn]

Did shot 3 on Friday.Was fine til today.Feeling like I might have vertigo.Very dizzy all day.Trying to hang in here at work without missing any days.Want to save my sick leave for the really bad days if they come.But I hate being dizzy(waaaaaaaaaaa)makes me queasy.Anyway,good luck my friends.And keep your chin up.

[DH Bill]

I'm at week 12 and had that dizzy thing. Once when I was driving I had to pull over. It seems to have gone away a couple of weeks ago.

[odessit]

Bill, I'll have 12-week test next week and I already know it's going to be down to 600 UI. I'm on tx with major hospital in Toronto and they are limited to the number of tests they can perform for each individual. I also know that at week 24 test will be more sensitive ( down to 50 UI ).
Personally, I'd be better off knowing I'm "undetectable".

[CARUU]

I haven't had the dizzy thing, but I'm really tired and feel like I'm on the verge of getting sick all of the time.  Like the beginning of getting the flu, but not a full blown case.  Anyway, I'm not complaining.  I think it could be a lot worse.  I'm using this as a time to try and scale back in some areas of my life and put more focus on others (like me!).  I tend to work too many hours and not spend enough time doing the right things for myself like exercise, good food, fun, etc.  If I'm only going to be able to do a few things, then I figure they should be the ones that are highest priority to helping me get rid of the dragon!

[DownThisRoad]

Glad to hear from you on the forum and glad you checked in with us. The feeling you are having, I have it at times too.  Almost like something wants to happen, but then doesn't get full blown. Like we talked about before, cutting back on work if at all possible is something that will benefit you now and in the long run of your treatment time.

You have the right attitude.  Keep going and take each day as it comes.  You'll have some really good days also.

I'm thinking and rooting for you caruu.  You can do this and you are strong.  You've taken the right steps to treat this disease.  That is over half the battle!

[Is_This_Real?]

Click this <a href="http://www.hcvadvocate.org/news/reports/AASLD_2003-1.html#1"> LINK </a> to read about BILN protease inhibitor studies.

(p.s.  I don't know if the above link will work, but I jsut tried the method as relayed by willing.  If it worked, then thanks WILLING.)

[seashell55]

48 weeks seems like a long time.  I did shot #30 or #31. I forget but I keep track at work.  Seems like I only have 19 more to go or is it 18. (I hope for the later).

I have to agree with you that I'm getting burnt out also. Each time I have to do Friday shot for the Pegasys and then Monday for the Procrit I ask myself why am I doing this with the odds so low.  But lucky1 made it as well as a lot of others and so will we.  

Hang in there.  We can and will make it.

[AK - Hepper]

I can make it to 48. I was gonna try to do more but the new numbers make it look like it doesn't up the odds any. I'm thinking either it works in 48 or it doesn't work at all, now.
Plus, I was expecting this stupid liver ache to go away by now and it just ain't going away. And my enzymes are still high, last alt was 320, makes me think it just ain't working the way it's supposed to. Just have to wait and see I guess, but I'm not getting my hopes up anymore. Well damn, I'm depressing myself now, I better stop. Good to hear from you, hope things are going ok...Timbo

[CCgirl]

Shot 2 for me yesterday, took it at 10:00 AM since I have a short work day today and needed to feel OK what tie do most of you take your shot?.I felt a little achy and really tired around 6:00 and went to bed at 9:30.. I mentioned this in a precious post but I was having trouble sleeping so the NP prescribed 5mg of Ambien.. the first night I slept like a baby for 10 hours, send night 7 now I get 4 hours and I wake up and am tossing and turning odes this ever go away? she had told me she could up the dosage if necessary I am wondering if this stuff just doesn

[mother of three]

Just wondering how you are feeling today. I hope the sides wern't to bad. I do mine tommorow night. I'm praying for a easy time. I'm drinking almost a gallon of water a day . Plus other juices. I guess that is really important. I was really wore out yesterday ,so I stayed on the couch ,with my dog and the remote.  I read about people having liver pain and a rash I haven't had any of those symtoms (symptoms). I guess thats a good thing. i wander if that is part of the hcv . Hope tou are feelig well.

[layla]

For me the restless feeling didn't go away but it is not constant. There are times I can sleep well for days maybe even a week. I also find the ambian doen't always keep me asleep for the night so I take 1/2 of one to get to sleep and when I wake up in the night I just take the other 1/2 if I am feeling restless. I also have 5mg ambians. I had 10's but I was breaking them into thirds and it was hard to do so I called the doc and got 5's. I found they get me to sleep but often don't last the night even if I take more so I tried this system. Glad your feeling good today. LL

[AK - Hepper]

I thought all you Pam-fans would get a kick out of this,I know psoriasis is on of my main concerns with HCV HARHAR

PEOPLE Daily News, p.m. update, 10/23/03

By STEPHEN M. SILVERMAN

Anderson Remarks Make Some Docs Sick

Pamela Anderson's comments that her liver is improving but she only has
10-15 years to live isn't sitting well with some hepatitis C experts.

Anderson Remarks Make Some Docs Sick

Pamela Anderson, who jumped the waves on TV's "Baywatch," is now making
waves in the medical community after her recent remarks about living
with hepatitis C, a disease she was first diagnosed as having in 2001.

"I think I've got a good 10 years left in me, which is sad. Maybe 15,
if I'm lucky," Anderson, 36, told US Weekly magazine. "It's scary," she
says, "but lately I've been feeling great. For some reason, my liver
keeps getting healthier."

Some medical professionals, however, are voicing their dismay over
Anderson's comments.

"This 10-year window she's given herself is her fantasy -- not anything
I
can think of clinically," says Massachusetts-based clinical
practitioner Richard S. Ferri, who edits NumedX, a national medical journal that
deals with hepatitis C.

He called Anderson's statements "inflammatory. There's no reason to
believe that a person who is hepatitis-C positive would not be able to
live a full and rich life with the treatments that are available today."

Teresa Hanbey, founder and executive director of the 11-year-old
Hepatitis C Outreach Project in Portland, Ore., says that because of
Anderson's quotes, "My phone lines are lit up and there are e-mails from
desperate and scared patients who think they, too, are going to die soon."

Hanby goes on to fume that on "Larry King Live," Anderson "showed how
ill-informed she was about her own disease when claimed she feared
'psoriasis' from her hepatitis, rather than the more accurate risk of
cirrhosis. One would expect a spokesperson to understand both the disease and
the consequences of misinformation to those who suffer from hepatitis C
and those who are learning about it for the first time."

But Bob Madison, director of communications and marketing for the
American Liver Foundation in New York, defended Anderson. "She's a great
friend of the ALF and served as the grand marshal of our motorcycle rally
to raise awareness," he says. "She is a tireless advocate and has been
helpful overall to the cause of hepatitis C -- the first celebrity ever
to come out and say she has it."

As for her diagnosis, Madison suggests, "The progress of hepatitis C is
different for every patient."

Anderson (who has said she contracted the disease from a dirty tattoo
needle) reportedly is not taking Interferon, a drug that hepatitis
patients often inject. Instead, her homeopathic doctor, Wendy Hewland,
tells Us that she "made a single remedy specifically for Pam."

As for the actress's future, Dr. H. Aaron Aronow of the UCLA National
Neurological AIDS Bank (which also does hepatitis C research) says,
"I'm sympathetic to anyone who has a chronic debilitating illness,
including Pamela Anderson."

But, he adds, "I certainly would never tell a patient she had 'X'
amount of time left."

[layla]

Yes I break them in half. It actually works petty well since getting back to sleep is often a problem. If I am particularly restless they only put me to sleep for 4 to 6 hours. That's when the other 1/2 comes in. Hope it works for both of you. Let me know. I take my shot late afternoon. I've tried it in the morning but prefer it later. It doesn't really matter for me as I rarely feel bad on shot day. It's always later. In fact I usually go out to diner or something on shot night.  Sleep well. LL

[CCgirl]

Lalya , are you recommending breaking the 5 mg in 1/2 and then take 1/2 before bed and 1/2 when I wake up at 2 AM?.. if that works I owe you LOL.. not being able to sleep is to me the worst! also on the Pam Anderson story what a hoot!! you would think that someone in the public eye spreading the word about a serious disease would know the difference between  psoriasis and cirrhosis.. don

[berlynn]

I am also 46 and F, lastnight was my 20th shot. After listening to others, I think that my sx have been relatively mild. The main one was tiredness, but I was tired before tx. I have found that as long as I keep something in my tummy, I don't experience as much in the way of flu or getting ready to be sick sx. When I don't eat, I have a whole gammut of sxs: dizziness, head-aches, upset stomach.
Eyedeas is a person after my own heart, mentioning eating goodies. I am a little alarmed at the fact that I have been craving chocolate do-nuts at all hours of the day and night. Last week I took my son to a fall festival and ate 3 bags of cotton candy in 2 days, very large bags. Thank goodness my effexor made me loose 15 lbs at the beginning of tx.
I have found that exercise and doing things that I enjoy have helped build my energy level. How many grandmas do you know that can do a 180 and butterslides on a wakeboard? and I learned to do this after I started tx. I have also found reading a good way to spend my down time. I can reccomend some very juicey Ann Rice books. I took a year off from teaching as not to submit my kiddos to riba rage and brain fog and all of our other wonderful ailments. I find that for the first time in many years I can actually read for pleasure as opposed to reading for knowledge.
I think that the sx that bothers me the most right now are the aches and pain in my neck, shoulder,elbow, wrist and hands. Sometimes it hurts to hold a glass or carry in a bag of groceries. I go to a chiro 1x a wk and have a deep tissue massage once every 3 wks. This helps some, but I still need aleve, especially on the days I wake up with head aches. I have also been having trouble sleeping past 2:30 or 3 am but my doctor has not deemed to prescribe anything more than advil or tylenol. I bought some tylenol pm but haven't tried it yet. Does anyone have imput on it or anything else nonprescription that may help w/ sleeping? My warm bubble baths just don't seem to do it????
         Take care everyone,     berlynn

[Petey7]

It's good to hear from those of you who have had relatively few side affects and are that far through treatment. Since I have had it very easy with the first two shots I keep thinking I am bound to have more trouble down the road. I am active in my work so I am hoping that will help keep me going. As you all know, as the years go by the time seems to fly faster and faster. I have a feeling THIS year won't be like the last several where I am saying " Boy this year is flying by." But maybe that's a good thing. I have never been very good at taking things one day at a time but I can see that is going to be very important this coming year. One good thing I have heard is how it seems that there are good days among the bad. Even the people who have had such a hard time with their first shot seem to feel better by the next day as a rule. Well, wishing the best to all. Thanks for all your info and encouragement.

[layla]

My experience was tylenol PM made me feel bad in the morning.  I'm always reading not to take tylenol often and I am restless often that's why I asked my doc for ambien.  Glad to hear your having few sides and hope it stays that way. LL

[mumovsix]

on this pamela anderson thing i have spent a great deal of time and emotion convincing my children that there mum is not going to die and i would be here as any mum would only for pamela anderson to announce she has 10 to 15 yrs left subsuquently my children now dont belive there mum is going to beat this also how must her children be feeling i would be interested to find out who misinformed her of her "life expectance" and is her ex hepc pos if so wonder if he has same amount of time to live very sad for newly diagnosed people who are uniformed

[MajNeni]

oops, pushed the wrong button...
1) so try 6 small meals instead of 3 large ones
2) eat things with GINGER in them; even drink ginger ale.  Flat ginger ale is ok, less gas; and warm, cuz cold hits the tummy kind of hard.

Ah, the Pam thing.  It's sad she is spreading misinformation.  [K. Rogers had HepC, too; even got 2 (two!)liver transplants.  I wish he'd be a spokesperson.  Obviously there are others.]

But what are we waiting for?  Let's act:  what can we all do to spread correct info?  There are small things, and big things.
For example: about 4 years ago I had a secretary in our department who totally freaked out about my HCV.  I requested some pamphlets be mailed to her about how it is really spread, and told her I'd done so.  She read them and realized that I was no danger to her.  She stopped sending me memos by campus mail... and came back to chit-chat at my desk.

MajNeni

[MajNeni]

The guidelines on Tylenol/acetominophen are generally that you keep it below 2000 mg in 24 hours.  That's 4 extra-strenght tablets.  
Tylenol PM adds Benadryl/diphenhydramine HCL.  That ingredient is an antihistamine, i.e. it quiets itches and the urge to sneeze, may help itchy eyes some (but their main problem is dryness; use artificial tears).  The diphen... dries membranes some, so might make dry eyes/mouth/nose worse, but it makes most people sleepy.

If you get a rumbly stomach, a little dausea, etc., try 2 things:
     something like six small meals instead of three big meals

[berlynn]

Hang in there. I'm learning that many people have similar sides but the consistency and degree seems to vary. This seems like a good place to learn from others, cry for help, be supported and to support others and also to get a good laugh.I had to show my daughter(20) and her friends the "ribavenger". Wow, I never have had sooo much fun with a machine gun. Keep in touch, there seems to be alot of us out here and we are all rooting for each other.
Take care,  berlynn