Hep C Discussion Forum

Zlikster · Guru

RE: First Day Begins

12Step Guy · Senior Member

This pattern is becoming my new normal. Do the dart on Thursday, feel 60% on Friday, 40% on Saturday and Sunday, then back to 60-70% until Saturday comes around again. I just plan on this and adjust my activities accordingly. No sense spending much time trying to alleviate the sides, just incorporate them in my daily life and get on with the important stuff. Sometimes we just have to bite the bull by the horns.

Vern AKA Captain B. Rash

Zlikster · Guru

day 3 had trouble sleeping from tinitus. Strangely, above my pre tx tinitus, which was amplified by 30% from interferon shot, i got new one much louder different pitch, but only in left ear?! I really got to talk with my doc re it. i didnt felt any sx like i did on Friday. Went to ski from 9-11am. Felt my energy levels are 80% from the normal level, which is great! I guess as tx progresses and Riba accumulates that precent will go down. looking forward (paradoxically) to next Friday and how intense sx will be best

Zlikster · Guru

will ask my doc, tho i doubt she is progressive enough to recommend a natural pain killer ;)

JIme · Guru

lol....I'm the wrong guy to ask about weed. Not my cup of tea to say the least.

I know there is lot's of info about it pro and con but I would ask my Dr. if I was you. Good luck.

Caryn · Senior Member

You are almost there Joanne and you have been so positive! I hope I can stay as positive!

Caryn · Senior Member

Hey Z, Well I took my 7 am meds and went back to sleep for a few hours. I just feel very achy all over. Nausea from time to time, but that's it. If you are planning on hitting the slopes, it sounds like you are feeling better! Glad to hear it!

Zlikster · Guru

@Neil, do tell if you find some corelation with particular food intake day before shot

Zlikster · Guru

thanks for kind words...seems it's pretty random with sx occurence, would be better if there was some pattern (easier to adjust when to take day off).

@JIme, you think cannabis would help as anti depressive/pain killer replacement? I think i saw your post on your clinical trial and how well it went with GS-7977 i wish FDA approves it asap...

I'll wait for 3rd week (hopefully some pattern will emerge in sx) and then decide will i take any pain killers (natural ones or pills)...

I plan to hop on skis tomorrow figured out better to try now until Riba hasn't accumulated and dropped my RBC

@Caryn, how are you doing? any updates?

cheers!

Neil_Canuck · Senior Member

Yeah, llike Jime says, there's no wusses on Tx.

Last night was my 29th shot and it was hell. Hit me about 3 hours after injection and my forearms and lower legs ached, I was shivering and felt nauseous. I took a Tylenol 2 hours later and it fixed me up. I went out for dinner at a restaurant last night and I'm wondering if there's any correlation with what I had and the severe Sx?? The last 4 weeks before this were a breeze.

JIme · Guru

Anybody who tries this tx is not a wuss in my book. It takes courage just to step up to the plate and take a swing.

My 1st shot was similar to yours then things lightened up and by the 3rd week almost no sx from the peg. The riba was a cumulative thing for me and I did ok on it for the most part. Got pretty tired toward the end.

Everybody is different and we all react a little differently to this stuff.

The one thing I would have done different was take some kind of anti depressant. Something mild would have been helpful I think. My Dr. suggested I wait and see how I felt. I thought I felt fine but I didn't realize how down I was until I stopped tx. But I survived and you will too.

This is not easy but it's doable. Keep moving forward.

Cinnamon Girl · Guru

Hi Zlikster, you are certainly not a wuss! Some people have more severe sx than others following their first shot, and my experience was very similar to yours. It was actually quite a shock, but I didn`t have another one like that again throughout the rest of my tx. Many people find the first one is the worst and I hope that will be the case for you too...it`s probably a good idea to take some pain killers next time though. smile

Best of luck with your appointment on Thurday, hope the tinnitus settles down.

Well done to you and to Caryn for getting started! ~ Jill

Caryn · Senior Member

Zlikster wrote:
@Caryn, nah i didn't do any meds...i wanted to see how is it without any "help". Next time we will see.

Ah! Well, then do NOT consider yourself a wuss. I took mine before I took my shot and had some next to the bed with me just in case!!

Zlikster · Guru

@Caryn, nah i didn't do any meds...i wanted to see how is it without any "help". Next time we will see.

Zlikster · Guru

@Greenqueen, thanks for advice, i thought i could do Riba at 10/22h, but i just couldn't eat anything from interferon sx and i didn't want to take Riba on empty stomach...23.30h is fine with me, i am nocturnal anyways (up to 3AM) and yeah, seems yougurt is a win win ))

@thanks Bouba, as i did my research seems Ribavirin dosage is either according to weight (regardeless of GT) or GT based only. According to weight tables, they gave me ok dosage (1000mg 69-75kg), according to GT3 i should be getting 800mg. Well, we will see after 2 weeks and blood test, if anemia show ups severe i presume they will cut Riba dosage. Wow u take a shot on Fri and u are still able to work? damn, suddenly i feel like a biggest wuss

best

Caryn · Senior Member

Zlikster wrote:
hey Caryn, glad to hear u didn't had any heavy sx ) lucky girl!

maybe the thing is u took shot @ evening, i had to take it @ 12.30 (since they @ hepatology only work until 13h for interferon shots), as i mentioned i wasn't that bad until 18h, now i understand why people take it in the evening...

i am now feeling ok, bit exausted, but no body pains, just a lite headache. Hey it could have been worse (to feel like a pile of crap next day too!)!

Things i have learned, if it's gonna be a same reaction next time

first 6hrs after shot are ez
yogurts taste like heaven
lavander oil sence helps ease headache temporary
grab a proper meal before shot and first sx since i can;t eat while with sx

i will consult with my doctor on Thu re tinitus, if it gets 2x louder i will have to make a difficult choice ;/

best

I was kind of wondering if this was going to hit me at some point today. Are you taking tylenol for the aches, pains and fever? Also, last night because I had to take Incivek right after my shot, I had some high fat yogurt with some super food ceral that contains quite a bit of fat per tbsp. That did taste good and was easy going down. I hope the tinitus does not become a problem for you...I wish you all the best!!!!

Zlikster · Guru

hey Caryn, glad to hear u didn't had any heavy sx ) lucky girl!

maybe the thing is u took shot @ evening, i had to take it @ 12.30 (since they @ hepatology only work until 13h for interferon shots), as i mentioned i wasn't that bad until 18h, now i understand why people take it in the evening...

i am now feeling ok, bit exausted, but no body pains, just a lite headache. Hey it could have been worse (to feel like a pile of crap next day too!)!

Things i have learned, if it's gonna be a same reaction next time

first 6hrs after shot are ez
yogurts taste like heaven
lavander oil sence helps ease headache temporary
grab a proper meal before shot and first sx since i can;t eat while with sx

i will consult with my doctor on Thu re tinitus, if it gets 2x louder i will have to make a difficult choice ;/

best

Caryn · Senior Member

Zlikster wrote:
here is my first shot experience from last nite. For the pain scale i will use 1-10 (1-3 lite pain, 4-6 medium, 7-8 heavy, 9 extreme, 10 ER)
12:30pm shot, no real sx, bit fluffy
14:00 grabbed nap 15:30 feel bit odd, went to city to finish car registration
17:00 meeting for new job that should pay my bills next 2 months, lite fever, blurry vision
18:00 fever and dizzynes buildup, went home
19:00 home in bed, fever is so extreme i was under 6 blankets, never had fever like this, body temp normal (i have genetic award from mom, had high body temp twice in my life, i have a lower body temp as a normal one 36C) headache pain level 2, stomach pl 2,
20:00 pain is moving around, chest n stomach pl 3, dry coughs from nowhere, fever still extreme, gf gave me some red rice to eat it tasted like sour cardboard, couldnt eat
21:00 headache pl 4, i tried to be brave and sat on training bike, made 300m and almost collapsed (wuss!), nausea buildup
22:00 fever is bit less extreme, headache pl 4, pain si now in hips, knees, ankles and below right rib pl 3 tinitus is bit louder than usual (getting scared by it)
23:30 first batch of Ribavirin, forced my self to eat before Riba, everything tastes like sour **** excpt i took plain probiotic yogurt it tasted to me like best vanilla ice cream ever so soothing ;)
00:00 fever is passing, headache and body pains still there forced myself to sleep
05:00 pain in back and leg joins woke me up, headache still there pl 2, was turning around in bed until 9
10:00 new day, feel exausted, my tinitus is louder than usual (1.5x) really scared it will stay like that

i havent taken any meds nor supplements, wanted to check how is it "on dry"
to be honest i have expected for sx on first shot to be lighter, this is not easy at all

best

Hey Z - sorry you are feeling so bad! I took my shot last night and I woke up a few times, but other than that I slept fine. I def feel a little shaky this morning. last night was feeling very achey and tired, but had to stay awake for the big event and 11 o'clock dose of Incivek. Man, when they say everyone reacts differently, they mean it! Good luck and from what I have read each shot gets better.

Caryn · Senior Member

Bouba wrote:
Caryn,
In the last weeks of Incivek intake, I switched to a simple lemon juice with olive oil as a fat component.
The reason was a weight gain that I got in the first 10 weeks of romancing with fat.
In my case that (lemon juice + olive oil) was enough for Incivek ingest but not for a Riba one. Riba needs a better snack.
I took Riba right after meals. 2 x 3 pills or 3 x 2 pills, whichever suits your schedule better.
I saw you combined Incivek and Riba at 5:45am. So just be aware of snack requirements.
Good luck!

Thanks for the advice! I actually wake up at 5:45 so that I can start eating at 6:30 and then take meds at 7. I am sure I am going to end up on the olive oil before long...it is so hard choking something down when you are not hungry.

Zlikster · Guru

here is my first shot experience from last nite. For the pain scale i will use 1-10 (1-3 lite pain, 4-6 medium, 7-8 heavy, 9 extreme, 10 ER)

12:30pm shot, no real sx, bit fluffy

14:00 grabbed nap 15:30 feel bit odd, went to city to finish car registration

17:00 meeting for new job that should pay my bills next 2 months, lite fever, blurry vision

18:00 fever and dizzynes buildup, went home

19:00 home in bed, fever is so extreme i was under 6 blankets, never had fever like this, body temp normal (i have genetic award from mom, had high body temp twice in my life, i have a lower body temp as a normal one 36C) headache pain level 2, stomach pl 2,

20:00 pain is moving around, chest n stomach pl 3, dry coughs from nowhere, fever still extreme, gf gave me some red rice to eat it tasted like sour cardboard, couldnt eat

21:00 headache pl 4, i tried to be brave and sat on training bike, made 300m and almost collapsed (wuss!), nausea buildup

22:00 fever is bit less extreme, headache pl 4, pain si now in hips, knees, ankles and below right rib pl 3 tinitus is bit louder than usual (getting scared by it)

23:30 first batch of Ribavirin, forced my self to eat before Riba, everything tastes like sour **** excpt i took plain probiotic yogurt it tasted to me like best vanilla ice cream ever so soothing ;)

00:00 fever is passing, headache and body pains still there forced myself to sleep

05:00 pain in back and leg joins woke me up, headache still there pl 2, was turning around in bed until 9

10:00 new day, feel exausted, my tinitus is louder than usual (1.5x) really scared it will stay like that

i havent taken any meds nor supplements, wanted to check how is it "on dry"

to be honest i have expected for sx on first shot to be lighter, this is not easy at all

best

greenqueen · Guru

Zlikster wrote:
cheers Neil, Caryn well so far so good, from tonite i am starting with Riba (23.30h / 11.30 will be my riba time, i have decided). Interferon shot went ez. I have just grab a small nap.

Hi,

The Riba can make people feel very speedy and keep them awake, so I'd recommend taking the last dose as early as possible. I used to do mine at around 6.30pm. Another trick is to make sure you take it with some food that includes a fat content as this helps absorption and also prevents gastric problems. Probiotic supplements or natural yoghurt in your diet can rebalance the "good bacteria" in the gut, which Riba tends to destroy.

All the best!

Steff xx

Bouba · Senior Member

Hi Zlikster,

Hope you are doing well.

If not mistaked, Riba is calculated by body weight for Gen type 1 triple therapy, while 2 & 3 dual one may be different.

On Gen type 1 TX it's usually 800 mg for under 75/80 kgs and 1200 mg above that.

The strength of interferon sx is individual. I am a Friday am shooter and go to work the same day.

Probably Sunday is my worst and then sx gradually reducing towards the end of the 7 days cicle.

Then again, on a triple therapy the combined sx in general should be worse than on a dual one.

Cheers and good luck!

JoAnneh · Guru

I am on week 37 of 48 and only use Tylenol
Occasionally. No other pain med.
Seems no way out easily. My sx
Are unpredictable. I feel great some days
After my injection, some days I am very
Fatigued. I can't imagine feeling good
Enough to exercise, I am anemic.
Glad Newbies are joining the fight to
Victory over Hep C!

-- Edited by JoAnneh on Saturday 26th of January 2013 05:16:18 PM

Bouba · Senior Member

Caryn,

In the last weeks of Incivek intake, I switched to a simple lemon juice with olive oil as a fat component.

The reason was a weight gain that I got in the first 10 weeks of romancing with fat.

In my case that (lemon juice + olive oil) was enough for Incivek ingest but not for a Riba one. Riba needs a better snack.

I took Riba right after meals. 2 x 3 pills or 3 x 2 pills, whichever suits your schedule better.

I saw you combined Incivek and Riba at 5:45am. So just be aware of snack requirements.

Good luck!

JoAnneh · Guru

Zlikster,
Hang in there! I got very sick The first time
On treatment w my 1st injection.
Your body will adjust. Eat crackers to
Settle your stomach. Drink water too!
I didn't have a harsh reaction
To med this time on tx.
Your body should adjust soon.
Hang in there!!!!

-- Edited by JoAnneh on Saturday 26th of January 2013 02:43:17 PM

Mary Jane · Guru

DJ wrote:
Hope it goes well! I found the first day stressful. Now I just find injection day stressful.

breath Deb

Mary Jane · Guru

Zlikster wrote:
dual therapy. I got light tinitus 4-5 years ago, i presume from a loud PA exposure (was djing quite a lot before). i do work in the music industry. composing and doing sound design for film, tv, adverts. At the moment i dont have a backup job to replace it. Mates are teasing me that if i loose hearing i can always become gfx designer ;))) i hope man that ur damn dragon is slayed properly!!!! cheers

Ok... got it... 2nd time around and doing the dual therapy Riba & Peg... LOL I know about loud PA's back in the day.. I think AC/DC was the loudest band I ever heard... Now I'm tellin my age... Awesome I knew you were in that industry.. I hope you don't have to deal with much of the rattle and hum in the ears...everyone is different, thanks for the encourgement I hope I kick this dragon into the next galaxy, it has hung around way to long... all the best MJ

DJ · Senior Member

Hope it goes well! I found the first day stressful. Now I just find injection day stressful.

packerfan24 · Senior Member

Good luck to you two newbies. Drugs effect everyone different. One of the things i did not like was the itching. Incevik turned me into a zoombie. I am two weeks done with meds. Get some prep. "H" you will need it. My blod work showed positive. red and white count is up himo is almost normal. Go back to dr. in 3 weeksThey are going to check VL again. For you newbies stay strong the road has bumbs but they will smooth out.

Ken

Zlikster · Guru

dual therapy. I got light tinitus 4-5 years ago, i presume from a loud PA exposure (was djing quite a lot before). i do work in the music industry. composing and doing sound design for film, tv, adverts. At the moment i dont have a backup job to replace it. Mates are teasing me that if i loose hearing i can always become gfx designer ;))) i hope man that ur damn dragon is slayed properly!!!! cheers

Mary Jane · Guru

Zlikster wrote:
tnx MJ, can u tell me aprox est how much does it varies (interferon sx)? from couple of hours to couple of days? damn u are 4th person that tells me he had tinitus. Sounds like it is really common thing :/ hope you are doing ok now after blood transfusion? glad u are doing great Caryn! ;) keep me updated tx partner! ;) indeed this forum is amazing, i feel like i am talking to family members ;))) best

Brain fog, Z can't remember if you doing dual or triple therapy? Everyone is different , so it depends... My first shot I didn't feel like crap till the 4th day but I did the Incevick.. The tinitus comes and goes so they way you state its part of your job you must be in the music industry or something to do with communications... hearing is important...so I understand.. much better , thank you, especially after I got off the Incevick, transfusion was @ week 8... got thru that as well, they did reduce the Riba dose to 600mg after that.. I met all the sero markers UND at weeks 4/8/14 and the reason for week 14 instead of 12 is because of me..so my treatment regimen is for 24 weeks I see a light at the end of the tunnel... all the best MJ

Mary Jane · Guru

Caryn wrote:
This. Forum is an amazing form of support, thanks everyone! Z, I am doing fine! I took a nap for a few hours. So far I am feeling nothing, but I am experiencing a little restless leg syndrome which I have never had before. I honestly feel better today than I did yesterday.....I was so stressed out about starting! Rest while you can Z!

Oh hey Caryin, I did deal with this issue numb pinky finger on left side and a few leg twitches this lasted for about 2 weeks.. this should pass... try to do something to take your mind off it

Zlikster · Guru

tnx MJ, can u tell me aprox est how much does it varies (interferon sx)? from couple of hours to couple of days? damn u are 4th person that tells me he had tinitus. Sounds like it is really common thing :/ hope you are doing ok now after blood transfusion? glad u are doing great Caryn! ;) keep me updated tx partner! ;) indeed this forum is amazing, i feel like i am talking to family members ;))) best

Caryn · Senior Member

This. Forum is an amazing form of support, thanks everyone! Z, I am doing fine! I took a nap for a few hours. So far I am feeling nothing, but I am experiencing a little restless leg syndrome which I have never had before. I honestly feel better today than I did yesterday.....I was so stressed out about starting! Rest while you can Z!

Mary Jane · Guru

Zlikster wrote:
thanks Jo ;) seems 1000mg of Riba is indeed for my weight type. from your experience, how long does it takes for interferon sx to lessen? day? i couldn't get dart on Fri nite, yet at noon. i think i've lost Fri as a fully operative work day. Caryn, how is it going? when are u getting first dart tonite? talk to me my tx partner ;) thank you all for support, i hope i am not too boring with repeated questions ;)

Nope .. we understand.. I'm a Saturday shooter, side effects vary from week to week.. about week 8 I noticed the ringing in my ears.. and the varies as well.. huffin and puffin still out of breath, and I am one of those that had a blood transfusion and a dose reduction coming up on week 20 ... ready to put a fork in it.. and be UND forever... that's my story and I'm stickin to it... all the best MJ

Zlikster · Guru

thanks Jo ;) seems 1000mg of Riba is indeed for my weight type. from your experience, how long does it takes for interferon sx to lessen? day? i couldn't get dart on Fri nite, yet at noon. i think i've lost Fri as a fully operative work day. Caryn, how is it going? when are u getting first dart tonite? talk to me my tx partner ;) thank you all for support, i hope i am not too boring with repeated questions ;)

Mary Jane · Guru

Zlikster wrote:
thanks MJ ;)

you're welcome I work with a colleague from Moldova and he got HEP C thru a transfusion, he treated and has cleared the virus... all the best to you MJ

JoAnneh · Guru

RIBA dose is calculated by body weight.
You got thru the anxiety of starting the med.
Stay strong think positive! We are here for you

Zlikster · Guru

thanks MJ ;)

Mary Jane · Guru

all the best to you both...Getting started is the hardest part.. you are on your way... being anxious is part of the process...you got this... breath...mj

Zlikster · Guru

tnx cinnamon girl i now feel some effects of Interferon. I can't concetrate properly, vision is a bit blurry and i have feel like i am on drugs (fluffy), lite fever and lite headache...i definetly can't work in this c ondition. Good thing i did shot on Fri ;)))) in few hrs it's time for first batch of Riba ;/

Anyone knows how does dosage of Riba calculates? i have 71kg and they gave me 1000mg per day of Riba (i thought i would get 800mg?)

thanks

Cinnamon Girl · Guru

Wishing you both the best of luck, Caryn and Zlikster, as you start your tx! smile Hope your first days go smoothly for you...remember to keep well hydrated and rest when you need to. Good that you`re starting on the same day, it`s great having a `tx buddy` for the journey...I was lucky enough to have one when I was tx! ~ Jill

ps - I`m moving this thread to the `On Treatment` section for you.

Caryn · Senior Member

Yes, thanks Neil!! Z, hope its okay to call you that, I feel nothing so far withy the incevik and RIBA. Shot is tonight, certainly things will change!!

Zlikster · Guru

cheers Neil, Caryn well so far so good, from tonite i am starting with Riba (23.30h / 11.30 will be my riba time, i have decided). Interferon shot went ez. I have just grab a small nap.

Neil_Canuck · Senior Member

Good luck to both of you. Remember, one day at a time.

Caryn · Senior Member

Good luck to you too!! How are you feeling so far?

Zlikster · Guru

;) good luck Caryn! same feelings overe here too
(my first day too)

Caryn · Senior Member

Well, I woke up at 5:45 to get my day going. I have choked down my 20 g's of fat, 2 incivek and 3 riba. I have begun sipping water. I hope I can maintain this and I hope I can tolerate this treatment. My heart is pounding through my chest right now with anticipation. I want this virus gone! I will be an official member of the darts club tonight. HERE WE GO!!!

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