Is there any Connection between sides and initial reaction

We all hear about the sx, some more than others. Is the inital reaction any indicator as to what can be expected the remainder of the journey? I just took my first, and have been having a rough go of it.
lilmoma

[amommy]

Hi there!
Welcome to the treatment train :)  I found that my first few shots were pretty rough, but they have gotten much better since then.  Now, as long as I get a good night's sleep on shot night, with the help of a little tylenol pm, I feel ok the next day.  I'm not ready to run a marathon or anything, but I do manage to stay home with my 2 year old and meet her needs on the day after the shot.  Please keep posting here.  It truly is a blessing to have this forum and the wonderful people on it!  Hang in there and please update us as your tx progresses.

[cuteus]

that is one question that should be develped and saved! is the reaction to tx during the 1st wk an indication of how the journey will go? maybe. let's get all the members to post their view.
my first shot and wk of tx was not memorable, things did not slow down considerably. the most obvious thing was the brain fog. it started early.
so the journey went fairly, without major episodes except for a two wk, one sided headache(I hardly ever get headaches),  the chest pain due to anemia, and the eye swelling, of course the impatience. all the other sides came and went without major intervention as with the others which prompted a brain scan, echo stress and a dermatology visit. the other sides were exhausting and annoying to deal with daily, but manageable.

I hope that a tough first wk does not translate to a tougher journey

[Mister beagle bailey]

Linda congrats on starting tx, I to had the same sx's on my first shot the same as Rocker.  It gets better after a while. I posted the same question after my first shot and many on the forum stated to me that they promised it will get better and that the first shot is hard, they were right.  Now I will say the same to you, hang in there it will get better, I promise.
I do shot #8 Sunday.

               Beagle

[wMich]

Welcome to the forum. I'm one of us who had somewhat nasty physical side effects in my first two weeks and saw them decline. I was up sick & heaving the night of my first Pegasys shot and had a few less bothersome waves of nausea for about 2-3 weeks after that. I took shot #30 last night. The nausea has never returned. The aches and flu-like stuff seems to come and go every week but it has been bearable and declining in intensity overall. In my case the emotional and mental side effects (for me, mild depression and irritability) really didn't take hold until I was several months into treatment. Aside from those mentioned, my other side effects have been mostly skin problems and mouth sores, irritating but not debilitating.

If my case is an indicator, your side effects may just abate as time goes on. I've heard that is the case for many, if not most of us. I've received many great tips and "heads ups" here and there is always someone here who has been in or is currently walking in your shoes. Chin up and good luck to you...
- Lee

[friole]

I think the other thing to factor in here is what was the state of your liver when you started.  I was wondering that too when I read the excellent thread on post tx treatment - how does the state of your liver factor in there.

For me - on week 32 of the journey now - I must report being overall weary but no horrible sides.  No shot reactions, even from the start. No flu-like symptoms except a week or so ago, and that may or may not have been tx.  The blood drops have been my most scary sx and fortunately there is remedy for that.  I am a 1a and my liver bx is 1/1.

[friscosue13]

Sorry to hear you're off to a rough start.  We had an "appointment" to start together, but it turns out I have to wait another two weeks.  I did give you a shout-out yesterday to wish you a bon voyage but had to use the last open thread available.  Please check in often to help yourself stay grounded.  The most difficult decision for me was to start treatment at all -- starting with the bx.  I've been coming to this website for two years and have found the people here to be supportive, informative and kind.  I've been treated like family -- without the baggage LOL.  Hope you can afford to do nothing but take care of yourself this weekend.  Be well.

[strator]

lilmomma - I don't think there is any black & white answer to initial sx and sx down the road. My sx have been all over the place these last 22 weeks. I think a point to remember also is that there may be a difference between experiencing sx from the initial injections, and those sx that feel to be more consistent from the riba. In my first 2 weeks I felt flu like stuff for 2 days after the injection but was able to work pretty heavy. I've been pretty fortunate w/sx but for most of the last 15 weeks or so I have constant muscle/joint aches particularly in the neck and shoulders. Those I'm use to though it may be due to years of pushing the body with physical work. My irritability 'factor' has increased drastically since week 12. And of course I've been posting a lot lately about the dadburned itch(which was way more livable until 4-5 weeks ago. My back looks like a roadmap.
Honestly though I don't count on any of these sx staying w/me, getting worse/ or for that matter dissapearing over the next 24 weeks of tx. Just as they change up or dissapear during the course of the day, they seem to change up as weeks go by. That's my tx experience thus far yet others say the 1st 1/2 is worse, others say the 2nd 1/2 is worse. We all react different. I've found for me it best not to project to far down tx. Preparation is a great thing but has limitations. Might as well ask who's gonna win a playoff or Super Bowl. May go just as expected, or may be the opposite. So I find it helps me more to use my energy getting through today.
Hope your ride is comfortable, your destination achieved.
Don

[lilmoma]

Hey, you remembered!!!!!!!!!!!
I think that just made my day!
I will keep coming back to this site, the people seem to very compassionate, and I like the humor here as well.
we all need a good laugh,

Why do you have to wait 2 more weeks?

I go through Pharmacare for mine, and they book the appt. weeks in advance, and it would very unlikely for that to be canceled.

PharmaCare really is a great place, the people are real nice, they almost baby you.......I like the fact that everything is delivered to my house, and I don't have to think about it.

lilmoma

[strator]

Here's a question on sx. I just got back my cbc(I'm doing 23/48 tonight). They look pretty good, but the listed suspects as usual are in the low range.
WBC 3.4 L
RBC 3.62 L
Hglbn 11.1 L
Hemacrotit 32.3 L
Platelets 118 L
Abs Lymphs 809 L (beginning tx was near 1900)
Now the hemoglobin has been on a pretty livable but steady decline from the 14.4 at the beginning of tx(11.1 this mo is only down from 11.4 of last mo). My question is whether there are any factors such as diet, vitamins, or for that matter choice in tv shows...that may be adjusted to give me a better shot of not making the further drop towards the anemic range? Just a thought, although I'm counting my blessings that I've yet had to battle anemia like some of you troopers.
Don

[mare52]

Greetings from a "recent lurker"...
shy at 1st, I guess.
Just been reading along for about 3 weeks.
I started tx the night before Mr. Beagle ! so I do 8 tonight
7 pm. Peg & copeg 4 pills daily.
Feel not so good on day 1 & 2 after shot. I am still forcing my exercise: intervals (slowish (LOL) jog with walking 45 minutes 3 times weekly. Chest feels like might explode BUT I use my lil FM radio to distract me to KEEP on keepin on!
I was completly transfused as child due to RH factor birth. Was yellow but never knew it was a future blood issue. I have always been active & thankfully very healthy, considering what was lurking undetected in my system for many years.
I am 2B, viral load at start ( ahem please sit down on this one, I guess...12,300,000 very high-yes? ) I had a load done last week (early I guess (( not the 12 week one as I  have read about here)), as the original load results had gotten misplaced) most recent test showed <10 ml. I suppose this looks like I am an "early responder" as I may have learned here? I had anabdominal ultra sound prior to treatment which was good. Have not had any bioposy ordered as of yet. I am not yet anemic & eat well to keep ahead of nutritional issues that I expect my arise.
I had LEARNED so much from reading your informative AND sometimes wacky posts here. I hope you can put up with yet another "dragon slayer" here? By the way I was born in the year of the dragon and was always told they were lucky?...humm

[can-do-man]

Besides lowering your riba, don't think theres much else you can do. Your decline seems to be slight so you might just level out close to where you are. Good luck friend. Might have to go the procrit way. If it gets much lower

[dyce]

L.moma, good you are now started on the meds. I've done some research on this and there seems to be no set pattern to the ? asked. Some people suffer no sx's and are successful at reaching svr, while others suffer horribly from it. I'm about to start tx myself and have looked at the sx's issues. I think all we can do is hope for the best when tx is started. Hope things go well!


    Mr.BB
         How are you feeling this morning? I'm sorry I can't keep up with all your post but I'm really busy working. I hope your hmg. holds good and 1 thing good is txing for 24 weeks has to be some relief . I'm wondering where our friends Iceboy ,Lat36 and some of the others ars fairing?

  Dyce

[OnAPrettyPoison]

You have anemia for sure, you are so lucky it didn't develop faster.  It is my understanding that there is really nothing you can do to fix it other than a blood builder.  It is strictly ribavirin induced.  My doc started the process to put  me on the procrit when I started falling below 11.0 which was around week 4.  Just did #27 last night.

I had an eventful start to treatment - no real bad side effects on the first shot, just real lethargic over the weekend.  Two days after my second shot, Katrina hit south of me and blew thru where I live.  I had no electricity for 4 or 5 days, temps in the 90's, and was called in to work supporting emergency responses.  Worked 16 hours days in the equivalent of a kicked over ant hill and developed a cruddy cough from H*** that it took months to get over.  Was it all treatment, probably not, but treatment sure didn't help, and low WBC contributed to me getting sick.

[GoofyDad]

I always had it pretty easy. First one wasn't a walk on the beach - but not bad. At about week 16, I started getting the pre-shot flu. Now each pre-shot day is worse than the week before. At week 23 - it's getting nasty - like stay in bed nasty, which is way out of the norm for me.

All in all though.... it's that Chinese water torture of the RIBA that wears me down.

[friscosue13]

Of course I didn't forget, Thelma!!!!  I woulda been Louise!!!!!

I'm waiting two weeks just b/c of the way the cards fell -- about time my bx was done and the results came back the day before I was to start; my dr's taking a week off, and he wouldn't have let me start anyway until I shake the cold I managed to get probably from all the erratic changes in weather we've been having in the northeast.  I don't know yet how and from where he's ordering my meds.  I have had experience with PharmaCare when I was going to treat with my last dr., and I agree, they're very nice folks.  I gearing up for this, though.  Bought myself some pretty pajamas to lounge around in and had my premium cable channels turned back on.  I finally decided to start treating myself the way I do everyone else.  It feels funny and a little selfish, but nice.  The good news is, I live alone.  The bad news is, I live alone.  Be well.

[dyce]

Caremark called thursday, they are the ins.group plan's specialty pharmacy. They approved pegasy and ribavarin and will be shipping the meds. to the docs. office tuesday, so I'm looking to start tx Fri. the 24th of this month.

    So it looks like I'll be txing all year into Feb. of 2007. I'm going to ask for 4week pcr but I read my ins. contract and I don't know if they'll cover the cost. Being 1-a the hardest to tx but with no liver damage and grade1 imflamation, I'll be able to clear this virus.

    Glad your felling better and hope your cbc test comes back good next week!

    Dyce

[cuteus]

welcome out of hiding! whenever is the right time, that is when people come out to play.  a 2b should be a piece of cake to slay, or slice? good luck

rocker, on the exerpt for the study, remember that those figures apply only because those non EVRs did the standard 48 wks. Numbers change considerably if they are allowed to continue beyond the total 48.  It is a disservice to those who could have gotten SVR to be excluded because of the numbers at wk 12, it might save the insurance co money to stop them, but they will pay in the long run when the damage advances further.  It is better to post the link or URL to the study, in addition to the excerpt,  so that people can read the details, still got it handy?
thanks for the input

[Mister beagle bailey]

Welcome, just read your post over and saw you started with me on tx.  I'm 2B VL 318000.before starting tx., my bx showed stage-0 grade-1.  We will be done with tx around June 11 and I know we can't wait to slay this dragon like every one else on the forum.  Good Luck!

                     Beagle

[GoofyDad]

Beagle says: "We will be done with tx around June 11 and I know we can't wait to slay this dragon like every one else on the forum."

Holy Cow. We've had some cliques form around here, but now Beagle and his buddies are gunning for us all? Hey, Beagle - I've got a family to look after!

[can-do-man]

goof said...Holy Cow. We've had some cliques form around here, but now Beagle and his buddies are gunning for us all? Hey, Beagle - I've got a family to look after!
________________________________________________________________

Goof sounds to me were gonna have to come up with some "protection money" Whats BB stand for? "BREAK BONES"

[jmjm530]

Just read you had a great 4-week PCR. Personally, I think you simply eat/drink/live too d*mn healthy for the virus to survive. Congratulations, you really deserve it !!!

-- Jim

[strator]

Jim- Actually I have lost about 18 lbs since December. Have had to struggle more for energy. Maybe I'll try a beef up, if nothing else I'll have fun.
(In my ftfball days they told me at 114lbs as a jr- if I put on 20lbs I'll start on defense senior year. At a ftball camp the next summer the Joe Paterno was there and the trainer for his team told me the only way to put on weight was to fill your plate and when you finish, refill the plate. For 3 wks after that my cousin and I worked out together every day, would buy a lb of meat each and have it for lunch. My parents were flippin cause I was emptying the fridge every meal. Well despite running 5 mls a day & liftin wts I put on 13lbs in 2 wks. and was up over 130. Then right before summer practice started I had 2 impacted wisdom teeth pulled.(Go for it goof) Bang, back down to 122 and never got heavier during the season. Didn't start either but I played mostly on offense.)
Man I can babble...
Goof and pop top man- You 2 guys been 'slayin' me since I first dipped toes in these tepid waters. My jaws hurt from laughin sometimes here, you guys are burnin up my calories!
1/2 pint

[NYgirl]

Welcome to the ex-lurker!  Now that you've posted you will find it much easier to in the future :)  I'm glad you are around the same time as Mr. BBBBB it will make it easier for me to remember when you started!

Regarding sides...I have found that they CHANGE constantly during treatment. Different sides at different times.

So while I'd say some people seem luckier over all - if you dont have the "flu" part you can still get the "anemia" part etc.

I never had the flu except recently at night - never in the beginning and only a few times.  But I had very bad anemia.

So I'd say overall - there really is no way to judge what is going to happen.

I hope you know what I am trying to say my words dont seem to be coming out right today.

It's nice to see you posting again LILMOM I wondered where you had been for a while!

[lat36]

Hi Mare52 (and Mr BB, Dyce), Hope the tx goes/is going well. I didn't really notice too much at the start, first shot I thought was going to be nothing at all, until about 6 hours later, went a bit shaky and hot and cold. The next week was a non-event, was annoyed I had the flu for the first time in years, still not sure about that - flu or not? Hope I don't gross anyone out, but there was more snot than I was expecting just from interferon!
I found the ribavirin to be worse than the interferon at the start, got a rash almost instantly and went anemic fast as well, but the interferon did sneak up later on, little infections (a couple of rounds of antibiotics). Didn't get depressed as such, just angry and intolerant, it was weird.
Week 41 I think now, I don't follow up on my tests at the moment, I'm trying to lay low in case they reduce anything. Last HGB I know of was 8.9, feel fine. I think it's been mentioned here before that it's the speed of the drop that gets you, and I've had a while to get used to it. Regarding the teeth comments - can vouch for that, need two fillings and dentist says my teeth are becoming "decalcified". She reckons it's the treatment. So that's not so great, she recommended sugar free gum also.
Dyce, we're in the same boat with regards to inflammation/damage (I always mix up grade/stage) so not too bad there. I wish I'd got the 4 week PCR. The whole process has been OK for me, don't push yourself too hard though, it takes longer to recover than normal. Second half of tx is dragging on. Best of luck to you too, Mr Beagle Bailey.

And thanks for the "hummer" definition goofydad, I was a bit stumped on that one!

[NYgirl]

You've had a decline but it's been such a nice slow decline it seems like you will live my friend.  

after my drastic drop in a week the Epogen really helped bring me back up - I'm in the 11s right now and living comfortably....while not perfect.  You know the routine if you go under 10 good chance at the Procrit but you are still quite a bit from it...since it's taken so long to get that low you know?

It seems like we experience a lot of the same sides at the same time - maybe because we are at about the same week (I was 22 last night I think).  I'm GLAD you didn't have that drastic decline in the hgb.

You've been the one of the toughest fighters on here and such a great role model for us all.

[GoofyDad]

Tater Says:
<i><b>I have his head in one hand & my sword in the other... <i></b>

She's the Lorena Bobbit of Hep C!

[jmjm530]

A year, has it been that long? Oh my g*d :)

High pre-tx viral load is considered by some studies as a negative predictor of SVR but not as important as say genotype which is the number one pre-tx predictor. Other pre-tx predictors are stage, race, age, sex, body mass, etc -- so there are lots of them.

Then there are those who say a good treatment response (like yours) is very important and to one degree or another  trumps (not the Donald) the negative pre-tx predictors.

And then there are those confused souls -- like me -- who have spoken to doctors who favor pre-tx indicators over treatment response and other doctors who favor  treatment response over pre-tx indicators :)

That said, you have a two-log drop in 4 weeks which I think everyone would agree that you're  a responder, and therefore should be quite happy.

Regarding your chances of "having a breakthrough" before week 12, a small minority of people see a rise -- or viral breakthrough -- after an initial response like yours (actually any time during tx), but again I believe this is a minority and don't know of any studies/numbers on this.

I forgot your stats -- geno 1 is what I'm mostly familiar with -- and if that's the case hopefully you'll be non-detectible by week 12. If you haven't already, you might want to ask your doctor about having a very sensitive PCR like Heptimax at week 12. Heptimax goes down to 5 IU/ml but anything under 50 IU/ml is probably still considered sensitive.

Congratulations again on a good response!

-- Jim

[anise]

I just did my first shot last thursday at 4:00 p.m..  On the way to the dc's office, was horrified I was really going to do it.  Terrible anxiety at the doctor's office.  Every monster that lurked in my mind for not treating during the past 5=6 years came alive - at the same time!   I almost bolted out of the office.  

After the shot I prepared for the worst.  Went to the store and got a thermometer, crystallized ginger (in case I got nauseous), wrapped up in a warm down blanket and watched movies.  Kept checking my temperature.  Nothing happened.  Even today I keep looking over my shoulder to see if any sides are coming.  Nothing?  Whether this continues or not I will see.  

By the way, I have been drinking about a gallon of water a day for the past two weeks.  Does anyone know if drinking water helps with sides?  My nurse thinks so.

[Algernon]

Hey, we're on the same schedule as well.  I'm on 8/24. Welcome to the buddies system.  Sure helps to make contact.

[strator]

mare52/ Hey there welcome to middle earth and it's assortment of hobbits, habits and dragon slayers. That's excellent your keeping up with exercise. I really think that physical activity helps me through. (I will admit I don't get mine by choice, if I wsan't putting food on the table through a physical job I don't know how much I'd get. Though home excercise might be safer. Yesterday I was in an attic crawling through old insulation(just what my itch needed) and despite being about the size of a hobbit I managed to bang my forehead on a rafter, straightened up too fast and put a few small roofing nail holes in my head. Seriously if your regime gets tough just plug through by breaking the walking/jogging up from 1 45 min set to maybe 3 15 min sets.
On the Viral load- yes you are in the high range but my start was 18.7 mil and others have been much higher. They can be pretty erratic. See yesterday's post(Great News) by rockerforlife, if ya wanna see hope in action. Suprised you haven't had a biopsy but there's a lot of schools of thought on that. Keep us updated...and hey sorry your going through this but you certainly sound like a yo're a gallant one.
May you raise your spear in victory,
Don

can do- Yeah I kinda figured that might be the only option but that ain't gonna happen unless there's a dratic change. I went to bed whistlin Johnny B. Good last night so life is okay. How you feeling?
Don

[can-do-man]

Not bad here, thank you. This late in the game theres a good chance yours will level out. Be careful out there its a crazy world

[Mister beagle bailey]

I'm doing better I think, will find out Tues. if my HGB went up.  I'm wondering where iceboy and lat36 is and how their doing.  Iceboy I'm concerned about, he has the same anemia I have and I remember his HGB being low.  it's been awhile since they have posted.
How are you doing?  Did they give you a start date to start meds yet?

                  Beagle

[GoofyDad]

How much weight have you lost? Could be your riba\weight ratio is changing? If so you could add more weight instead of dropping riba. I did that by weighing myself with my hiking boots and heavy coat on every day..... suprisingly, it didn't seem to change my bloodwork at all...

I used to try to walk quite a bit, thinking that might stimulate natural growth factors. I can't say it worked.

The only other thing I can think of a healthy diet. Don't know if it would help but it can't hurt. What would a healthy B-ball player eat? Lots of fresh veggies and adequate protien would make sense to me.

I'm basing all this on nothing but speculation. So don't give it much weight.

Good luck!  

[can-do-man]

First couple went really smooth for me, then there was a few that i had some chills, slight fever, just felt dragie, nothing much till last sunday. Shot number 8 and about 6 hours later it just kicked the **** out of me. shot 9 tomorrow night and getting a little nervous.

[can-do-man]

you said....What would a healthy B-ball player eat?

STERIODS

[jmjm530]

Strator muses: My question is whether there are any factors such as diet, vitamins, or for that matter choice in tv shows..
---------------------------------------------------

As Can-Do suggests, compared to many others, that's not a dramatic drop given it has occured over a 4-month time period. Since you're still over 10-11, a lot depends on how you feel, as well as your underlying medical history.

Some here take b12 or folic acid, but Procrit seems the only studied way (other than dose reduction) to raise hgb while on the tx drugs. But Procrit is another strong drug for your system, so you and your doctor have to weigh the pro's and con's at the appropriate time.

As far as TV shows, Olympic X-Country Skiing has been known to raise hgb in some -- whoops, it appears it mostly does that for a few racers :)  http://tinyurl.com/d5kfa

-- Jim