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1st shot!!!!!!!!!!!!!!do sx get worse as time goes on????

I just took my 1st shot Fri. afternoon/Riba right after. I felt fine up until about 10pm when the chills (my teeth were chattering), fever, aches, numbness in my fingers, peeing a lot started. I took more Tylenol and went to bed. Things must have settled down later on because I got hot from all the covers. I slept fine, I woke up fairly fine, slight headache which is not unusual for me. I am still feeling ok...question is, will things build up and get worse and worse as time goes on? My husband is concerned about the mental problems...poor thing must be fearing for life as he knows it...So will I get crankier as time goes on? If this is it, I will sail through this thing but if things get progressively worse, I would like to know. Any input?
Thanks!
Cin
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Avatar universal
Well, I mentioned in another post that the doc took me off the meds Wed. I called them to report the finger tingling along with the slight heart thumping w/ chest tightness (fraction of a second but it happened nonetheless) He probably left a message on my ans. mach. at work either Mon. night or Tues but of course I wasn't at work, I was marching in NYC on Tues, got the message on Wed, spoke to the nurse and they said 'stop taking the meds now' I think it is because of the numbness and tingling in my fingers...my friend (who is a nurse) says your heart shuts down the extremities to conserve blood flow to the organs so maybe the doc is afraid I will have a MI...I do have a family hx of grandfather dropped dead of a heart attack at the age of 59...I am 51...Anyway, another issue I noticed since about Wed. is I can't breathe very well if I exert myself...walking up the stairs to my office yesterday I could not catch my breath...my brain was racing...what do I do???what do I do??? I decided if I panic I will hyperventilate which won't be cool, I decided to take deep slow breaths and hope for the best...luckily it worked...the good news is I work in a hospital so one of my co-workers would have found me soon enough...I still had the rx for the CBC so I went down to the lab and got that done. At least they will have it for the apt on the 18th and I am sure it is because my count is down. I always have had a hx of anemia anyway so maybe the doc knows what he is talking about...either way, not being able to breathe scared the s**t out of me! Next time I will take the elevator!!!
Cin
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Avatar universal
Hey cquest, Im a Hep-C, geno-3 and I too, took my first dosage of the Pegasys with the ribavirin the same day you did.  I have to say it wasn't as bad as all those testimonials ya read on Loyld Wrights website.  But then he has a different agenda and that is to sell his Herbs as a substitute for the treatment of hep-c. I dont know what your medical team told you but drinking lots of plain water throughout the day and then tapering off towards bedtime seems to be working fine for me, as far as sleep goes.  I just always make it a point to have water nearby the bed in the event I wake up with the cotton mouth.  Dont worry, least you got a Husband to hold your hand and assist with massage therapy.  doons
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Avatar universal
Actually the needles are pretty small...I didn't even feel the shot the nurse gave me. How can you tell what size the needles are anyway?

And yes, WATER WATER WATER for tomorrow! I will have a backpack and as much as I can carry along with an umbrella for the sun/rain. I will be wearing a red baseball cap (only as long as I have to wear it, not a hat person).  

I'm gettin one heck of a rash you guys...it started on my hand, part of it has started to go away, now it's on my one foot...

Cin
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Avatar universal
You definitely ought to be able to get the 27 or possibly 28 g. x 1/2" syringes, the type used by diabetics. In New York State, you can walk into a pharmacy without a prescription and purchase 10 of these syringes in a plastic bag; at cvs they were ~$3.  
If you draw the meds into the syringe yourself, there is the possibility to draw a bit more if you drain the vial.  I figure I got about 10% extra into each shot of Pegasys that way.  You sacrifice this with the prefilled syringes.  

About NYC - bring WATER.  Dehydration will make us crazier, dizzier, headachier.  It is likely to be a scorcher.  I will bring an umbrella for shade and whatever... MN

Tuesday's NYC forecast (from weather ch.):
Scattered T-Storms/showers in the morning with isolated thunderstorms arriving in the afternoon. High 87F. Winds SSW at 5 to 10 mph. Chance of rain 50%.
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Avatar universal
The first few shots were pretty bad for me. I was up with vomiting, chills, headache. I had to have my parents come and get the kids. I am now on week 42 and as time has gone on, I have found that the fatigue from lowered Hgb has been the worst of the side effects.The rest have faded with time. I have never hesitated to ask my doc to medicate side effects and medicate side effects from the meds for side effects. I'm very grateful that I have been able to work and care for kids, home, etc.
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85135 tn?1227289772
If I had opened my package and saw a 22ga needle, I would have ran off, screaming, into the night, never to be seen again.

Dana
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Avatar universal
I cant help but laugh at the " feeling a bit crazed" . That hits the nail on the head.
           E
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Avatar universal
Keep in mind also that  treatment changes as the medication accumulates in your blood stream.  It takes 4-5 weeks to achieve full concentration,  so that's definitely one distinct phase that you pass through.  Another random thought:  being around urban crowds at the beginning of tx was very intense, as I remember.  I always had to wear shades to blunt the energy impact.   As for you in Manhattan for the march--the good thing is that everyone in NYC is also feeling a bit crazed.   The difference between you and the rest is that, thanks to tx, you KNOW that you are.  

I will definitley not miss the headaches and nausea and blah blah blah, but some aspects of the tx mental state were delightfully wicked .
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Avatar universal
About tne NYC march, I am a little nervous traveling down to the city by myself since everyone I know has to work that day... it's the wandering around looking for you guys that has me worried I think....is this what they mean about the mental sx? Normally I don't think I would bat an eye...

And so far today I am still doing ok, last night I had a fever and I noticed a rash on my hands today. I have rashes all the time anyway, allergic to Nickel.

Luckily the shots are in those pre-filled syringes so hopefully next Fri I will manage ok by myself. I might just get one of the nurses at the hospital where I work give it to me...
Cin
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Avatar universal
To be fair to the pharmacy, I don't think they knew what was what.  I wonder if they have even filled the peg-copeg rx before. The peg-copeg rx is a prestamped thing that the doc just circles the doseage on.  My pharmacist said for the prefills, you also have to circle the words that say "prefilled."  I think that is what the nurse straightened him out on. What they gave me after that first shot was a 25ga 1/2" syringe, and that is even a little big, I think.  I will say that they are all treating me pretty nice, and they all know who I am now.  Even the clerk who gave me the 22ga who looked at me with a disgusted eye the first time seems to have softened.
K
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Avatar universal
ON NYC March, you should be ok, I was able to do the NYS  2003 Summer Run series and finish it, panting, the first mo I started tx.

You did read where to meet and what to wear to identify each one of us?  I found a red visor in Wal Mart and have written Friends of MH on it with my monicker.  Look for the red visors/caps by the Eagle statue. See you there.

ps I did not run the series in 2004, but did it this year again, sort of a challenge to see if my mile was back to its normal 13-14minute.  KInd of embarrassing seeing 70 yrs old doing a 7 min mile, though.
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Avatar universal
My first shot will be this Thursday. Question: can I drive home from the doctors? They said i need to do the first one in the office. Thanks.
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Avatar universal
Next shot will be later in the day since I went to the docs for this one and they only give them up to 4pm. So far today, I am just a little off my game, somewhat subdued and don't feel like cleaning like I should. However, it didn't stop me from going to the mall this morning! Woe be unto the med that stops me from shopping! The blood counts will be the tie breaker...I'm sure this thing will continue to evolve and I will notice little things that are not usual for me but I will deal with it as best I can. What else can we do? I believe in the power of positive thinking.I will not be beaten down just yet!!! I have a lot of fight in me! My father used to say I should have been a lawyer because I always argued with him to prove my point...I will conduct an internal argument with this devil virus and hope to God I win it!!!
Cin
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Avatar universal
LOL, the sx were so bad in the beginning that all I could think of was getting off the meds. Now all I think about is one more week down .

Nyph..Did you take Procrit for the anemia. Your insurance should pay as you are symptomatic and your H/H is below a certain level. Insurance can be a problem. Anemia is a huge problem , not enough O2 to the brain plus the whole body must work harder. Like we need that.

Also there is a site, " Pegassist.com " I find it helpful . Treatment tracker, journal, suggestions , ..goals for the day. The goals help with the blahs...I keep it simple. On the days I work that is the goal ,  I work 12 shifts . Keeping track of my water(a small every day goal ). Doing one thing that is fun. Whatever works to keep the blahs away.
One person in the forum suggested channeling negative energy towards the virus. Blah to the virus.

The medication also makes me feel hyper..anyone else experiencing this?
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Avatar universal
I am not hyper at all but then again, what do I know? Last night I was very excitable after the shot...waiting for the sx to sneak up on me and when they did, well I was pretty much down for the count...At least we are all pretty lucky to have this forum to ask other people about this stuff.
Cin
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Avatar universal
personally, the worst side is the anemia. please,please keep track of your blood counts. i have been totally off meds for 3.5 days, and while i can breathe better, the anxiety is killing me, lol. i look back over the 10 days prior, and barely remember them. numbing fatigue, not being able to breathe, and now i realize, confusion. and i continued to work...frightening. i just remember totally focusing on the task in front of me, the rest of the world could have gone to pot and i wouldn't have noticed.
now that i have my brain back, round 2 will be different. i will restart on tuesday with a new resolve..  i think these meds snuck up on me, kicked me in the a** and laughed. they won't surprize me twice.
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Avatar universal
Yes, you can drive home from the doctor.  That should not be a problem at all.  

Cquest - I watched the pegasyst video and said, oh yeah, I can do this - so I just called the nurse for helpful tips instead of going in for that first shot.  So picked up the meds from the pharmacy on Friday after work and OMG what is this -- it was the vials, not the cute little prefilled syringes. So I asked what I do I do it with and the pharmacy helper gave me a syringe that was 22 gauge with a 1" needle (HUGE).  Boy, was my first shot a learning experience.  At least got some smaller syringes for the next 3, and the nurse cleared up the prescription mess, so I have the prefills from here on out.

Leany - oh yes I am hyper for two days after the shot -- at least so far.
Kathy
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Avatar universal
I had a similar experience my first shot--chills, body aches and fever about 6 hrs after the shot. This Monday will be my 9th shot. Ths first shot was the worst. My sides have been once in a while I wake up with nausea, but that has happened about 4 times. I am a slightly weaker but not too bad. Like everyone  says--we all react differently to tx and hopefully you'll do fine.
Monday will also be my 8th week PCR and hoping the results come back UNDETECTED. Have my fingers crossed.
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Avatar universal
I mentioned my physical sx in the previous posting but forgot to mention the phycological ones. Things that bothered my before tx, really bother me now. But thankfully, it all has been manageable so far. So good luck with your tx.
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Avatar universal
I was very hyper the first 4 wks of treatment, until I started taking an AD.  At first I thought, "Jeez, this is great, I actually have some energy!" and then I began to feel out of control and didn't like it so much.  I leveled off with the AD, though, so it all worked out ok.

Laika
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Avatar universal
I am in a state of disbelief about your mix up ....a 22G ,1" ..what a nightmare .
There has got to be a better way.
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Avatar universal
Your experience was the same as mine.  You might want to take solace in the thought that your first shot has probably wiped out an outrageous number of viri.  I never had a problem with the shots after the first.  I don't even take tylenol any more.  Keep an eye out for the 72 hours after each shot.  That is when you will likely get sx that come and go, like fevers, etc.
DJL
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Avatar universal
Sorry not to include you in my reply, we were posting at the same time! Really, thank you all for 'being there' for me.

Last night when I was chattering away, I asked my husband for something, forget what, and he didn't respond so I told him 'You are supposed to be supportive and help me' and he quickly realized this was no joke and did whatever it was I needed. This morning he asked how I felt and then he mentioned the mental sx...I told him I would ask you guys.

I really don't think doctors know all that much, I asked the nurse that gave me the shot how many HCV patient's he had and she said 'a handful'. How much can you know with only a handful of patient's?
Cin
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Avatar universal
Thank you everyone for responding so quickly! I took the Riba this morning about 1 1/2 hrs ago and I stll feel ok. I hope this is it and things only improve from here.

Laika, no, I don't really get moody or cranky in general. I am a pretty even keeled, happy person. I thought I was excited about the 1st shot and then as the time approached closer and closer, I realized I was a little anxious.

I plan to join the march in NYC this Tues. since it looks like the sx are pretty minimal. Whew! Good to know they don't build up and get worse, generally speaking anyway, except for the blood counts and only time will tell.

All the good vibes from you guys must work!

Cin
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