Yeah I'm glad you told about it being able to stay out up to 24 hours. I often have wondered how long. Awwww,,,finally getting the kit...ROFL I don't blame ya!..No stats until kit! haha you said in other thread that nurse didn't even ask for your dr but I'm thinking ROFL...Why? Who would be crazy enough to order a pegasy's kit unless they actually did have hep c..LOL
HAH! I called pegasys this morning cause my vial was not kept cold enough by my icepack yesterday, and since it said in red:"refrigerate immediately" i was concerned.
She said it can stay out for 24 hrs with no problem.
I then said I never got a Kit from anyone, and she is sending me one. if she does, I'll let them use my stats. lol. she asked about start of tx date and if I cleared....all the time I was thinking ...I don't want to tell you until YOU give Me my kit...lol...we'll see.
haha That will show them not to mess with cuteus!! LOL Your dr didn't give you your starter kit? Thats where we got ours was on visit getting ready to start tx. What are you doing with your needles?
ssshhhhh! I was throwing them in the garbage, with the security lid on. No one told me anything or gave me anything, not the original GI or the next! I finally mentioned IT to them, and they gave me a sharps container.
That is why WE have to be on top of things, brain fog and all, it is kind of scary that no one inquired.
Pegasys owes me a starter kit. did not even get a sharps container until 6 months into tx. talk about feeling neglected. just for that I'm not going to let them use my stats when I clear. HAH!
Yes, ice cream is very good with the RBVN. (Especially if your mouth gets sore, like some of us.) I try to keep at least 5 flavors in the freezer at all times. I would say, rather than taking the RBVN with breakfast and dinner, you may want to aim for breakfast and bedtime snack -- 12 hours apart, or as close to that as you can manage comfortably. *** The ONLY after-injection side effect I have had is insomnia. *** No fevers, no chills, no headaches, no muscle aches, no nausea ... . Don't be too afraid, OK? But the insomnia side effect grabbed hold of me right away and won't let go. It is particularly strong, for me, the night after injection or the night after that. Sleep being very, very important (that's when your immune system regenerates, rebuilds), I take Ambien. Very nice. Feels like normal sleep, no "hangover." But my point is, it's different for everyone. Some sleep, some don't! This journey is changing my life in so many ways, from deep in the spirit out to the soles of my feet, I think; I feel it is a gift beyond anything I could have imagined. A surprise in every day, just like boxes of crackerjacks.
Here is something I wrote for another site a LONG time ago. Print it out if you can't remember.....
Contributed by Indiana:
Ok....You're ready to start. Now what??
Water.... Water is our friend. It lessens the sides. The meds dehydrate us so we need the x-tra fluids to process the meds and keep the baddies away. Drink a MINIMUM of 1/2 your weight in ounces per day. I drink much more. Especially on the days closer to the shot. I raise my intake starting the night before "Shot Nite" and continue for several days after. Gatorades and sports drinks are good and keep up the electrolytes. Caffeine drinks and milk don't count.
When.... Most folks do their shot on Friday or Saturday night. This way you sleep through some of the sides. The sides usually start 6-24 hours after the stick. This gives them time to recover before work on Monday. The 1st week is normally the worst and usually takes longer to recover from. After that a Friday/Saturday stick should allow for handling the weekly work schedule.
Tylenol/Ibuprofin..... Always clear them with your Doctor first. Tylenol is processed mainly through the kidneys so I prefer that. Start taking it either the night before or the morning of "Shot Nite". This way it is well into your system. Take it as needed after that to help with the sides like fever and aches. Try to keep it below 2000mg per day. Try not to take it every day like candy either. After the first few weeks you should only need it around the shot day and a few days after.
Ice pack.... Some use this on the area they do the shot in to numb that area just prior to doing "The Deed". It's a personal choice.
Jammies...You do need to get some very neat jammies before starting. You will be spending an increased amount of time in them. We MUST maintain our dignity. Have some very warm ones too for those Saturday Night Fevers and chills.
Shades....Get some COOL new shades to wear outside and on the Doctor visits. These are required to maintain our "Coolness Level".
Thermometer....Keep a thermometer handy. Especially the first few weeks. Fever should stay below 101 and not last more than a day or 2. Increase water if fever is present. Rectal thermometers are NOT recommended....unless you're one of "Those". We get stuck enough.
Hide the breakables!! The anger management must begin right away. Send the fine china into storage and break out the good plastic wear.
Lotions & potions....Collect all manner of lotions & potions to combat the itching and rashes, straw hair, etc. Aveeno makes several products. Eucerine cream works well too. They say Badger
Balm is good but I still can't get that Badger to give it up!
Gain control of the TV remote.....This is a must to control your environment and keep down the "Riba Rage". With new shades, new Jammies, and control of the remote you are invincible!!
Take vitamins and suppliments after checking with your doctor. Antioxidents are very good for us. Avoid Iron suppliments....you should get enough in your diet.
Take your Riba pills around Breakfast/ dinner time and with food. This keeps the med level up longer. If you take it with food then ALWAYS take it with food to keep the levels the same.
Hide all cameras right away until you start feeling better to prevent any accidental murders. You will understand the relevence of this soon after starting tx.
This should get you going. Others will add as they see what I may have missed.
Keep a clear path to the bathroom. You will need that for those midnight trips.
Don't be afraid. You will do fine. Let us know how you are from there and we'll help all we can.
Good Luck.....
Hiya Couch, congrats on starting tx! I just updated my website today, so I didnt get your latest news on there, but next month when I update, let me know how it is going and I will post your stats and weeks into tx. Is your hubby listed on there? What is his screen name? Let me know his info too if he isnt already on my site...I have listed several "relapsers/nonresponders/had-to-quitters"...sad but thats life eh?! Lots of SVR's though too.
For anyone who has forgotten or hasnt seen it yet it is
www.geocities.com/auggieaz
Not a fund raising site, just a personal journal of those I have met here and another Hep C site that want to be listed as fellow dragon slayers...Hugs to you all, OHC/Auggie
I had high RA factor, bilateral carpal, sciatica and "tender" points. Have not gotten much worse with tx. there is a general all body achiness and malaise that responds to pain meds.
Some get 0 sides. they won't be in this forum much if at all. nothing to complain about..lol
Drink TONS of water!!! It will save you from many of the SX. My Doc let me start with a lower dose and it helped me sooo much. Every week I would raise it a little. Take tylenol and Benadryl a half an hour before you do the shot. I am on #4 and have not had too bad of a fever. DRINK WATER all day. It keeps a balace in your body. Start now with the water and it will help sooo much :)
They told me to start the pills the same day as your first shot. I was sooo nervous just like all of us. My hand was shaking bad but I did it and you will too. Very few side effects for me at first. This past week was bad and now realize I wasn't getting enough sleep or drinking enough water. Yesterday I was miserable but got a good nights sleep and drank lots of water today and have felt great. Too bad its shot time in one hour!! Number 8/48.
Good luck!
I can understand completely what you are going through.
I was very scared when I started tx October 10th of 2002.
But I found out that although it was not an easy journey but
it did not need all this fear. I went through the treatment
for 48 weeks and did not miss one day of work. I am clear
now 6 monthes post treatment. I wish you the best of luck.
Dirac
I should remember all this stuff but seem to have brain fog even before starting!! I have a contact I can call, but thought I would reach out to all of you, as you know first hand. Anyway, I will start pills and then the shot this Friday. I have a problem with the water drinking. I am VERY often working where there is NO toilet! Now, in my drinking days, I was quite capable of dropping my drawers anywhere, but....... Gonna have to bring a potty with me??? Hmmmm, I'll figure it out as I KNOW it VERY important. Thanks, and nice to see you again OHC
start on the day and at the times you intend on sticking with for all of your tx months. start the peg and the riba at the same time.
if you have any doubts as to what the required times and dosages are contact your dr. asap! they should have already gone over all this with you...
don't change days or times unless absolutely necessary. and only on the advise of your GI.
did anybody keep a copy of the riba rage card? is that what was called a few months back? there hasn't been one issued in a long time...
and who was mama cat?
yea yea ...write things down so i don't forget... what for? with all these able brains in the forum to remind me...
No one told me anything about the ribvarin so I brought it to my dr's with my first shot. The PA told me I should have taken it that morning, but starting in the evening would be ok. (Thanks for nothing!) Good luck and may your sides be minor and your virus clear early!
Hi CP
I remember yoy when I first came around. It will go quicker than you think. Good Luck to you and I hope your hubby can try again if it is correct for him.
GOD BLESS
Indiana, your post about Tx is excellent! Should be must reading for all newbies, like me. Thanks. CP, I just started 10 days ago and, though it hasn't been fun, its better that I expected. I drink lots of gatorade, and the Tylenol helped the first 3 days a lot. Good Luck To You!!!
Pete
Hey, they also have a "Pegassist" site (www.pegasys.com)where you can register and keep your lab work in a journal, or at least get email reminders it is time for your shot! I actually forgot to take it once, and forgot my pills several times. I dont know what PegIntron offers, but Pegasys has a starter kit for people that has a pill box and video on how to give the shot, and a little diary to keep track of your tx. Just cool stuff.
Congratulations! The only thing I have to add is that my doc told me to eat something fatty w/ my riba, like cake or ice cream. I love that woman! Good luck and keep a positive attitude. My first 6 weeks were a breeze cuz I'd Just read "The Guide" from earlier on this post. Joni
Didn't know if anyone would remember me, it's been so long since I posted. We had an excellent trip to Mexico, recharged our batteries and are once again ready for the BIG FIGHT!My husband was not able to finish his tx, (platelet problems) but ****, did he ever feel good down there. Maybe it is the sun and all the relaxation. Gotta find a way to live there year round. Anyway, now it is my turn and although I am a little apprehensive, I know that it is the only choice for me. We are both geno-type 2, so hopefully the next 6 months will fly by. I know many of you are doing this for a year and longer, so in that way I am lucky. Do any of you have RA, and has it gotten way worse? That's what my doc. has warned me about mostly. Thanks for all the responses, as we all know, sometimes the people on this forum are the only people we know who can relate to our troubles and are ready to sympathize and I truly appreciate that. CP
Hope your side free on tx. I didn't have any sx the first couple months. You never know but I do wish you the best. My hep doc also had me start peg and riba on the same day. LL
It really doesn't matter what day you start, but that day should remain your shot day. They really recomend against switching the shot day, and if you do decide to switch there are guidelines that restrict you to a one day switch per week until you are at your new day. Hope that made sense.
Congratulations and fasten your seat belt for the ride of your life.
I always ask my hepatologist questions like that. He is the one that can best answer questions on your tx, and note in your chart the actual start date. Call them today and ask them.
Good luck.