Aa
First injection last night
Hi Everyone! Well, I did it. I was so nervous about giving myself the injection but it was really easy. I woke up about 4am with chills, moderate headache, low grade temp, and achy. Took some tylenol, got warmed up and it went away in about 3 hours. Went to the lake nearby with my children and grandchildren to fish this afternoon - did a lot of walking and climbing so I'm kind of tired tonight.
The thing is this is not unlike how I've been feeling for the past 2 years when my (mis)dx was fibromyalgia so the symptoms were not foreign at all. I had started to feel better after I stopped using pain meds in Sept when I found out I had Hep C(guess my liver was just toxic along with my body trying to kill the virus.) So I had a few weeks of feeling better. Will see how it goes over the long haul.
It has been so helpful having this forum so I knew what might happen and be prepared for it. Thanks to everyone for being so willing to help others!
scubadiver30 - How are you? Did you experience any side effects after your 1st injection last nite? Hope you are doing well.
Linda
The thing is this is not unlike how I've been feeling for the past 2 years when my (mis)dx was fibromyalgia so the symptoms were not foreign at all. I had started to feel better after I stopped using pain meds in Sept when I found out I had Hep C(guess my liver was just toxic along with my body trying to kill the virus.) So I had a few weeks of feeling better. Will see how it goes over the long haul.
It has been so helpful having this forum so I knew what might happen and be prepared for it. Thanks to everyone for being so willing to help others!
scubadiver30 - How are you? Did you experience any side effects after your 1st injection last nite? Hope you are doing well.
Linda
Hi Lindy,
Congratulations On Getting Started....
Actually I left you a post many, many threads down, (On the one about the support group in Woodstock)...but it had already been days & I didn't think you'd see it.... If you get a chance, please check it out!
My home is in Forsyth County, however I am currently in Washington State... but being a neighbor, I didn't think it would be polite to not say hello... (I've been here 3 years & so far you & Scuba are the first in my close proximity) That's pretty Cool... & NOPE I wouldn't eat any fish out of Lake Lanier Either... That's For SURE!!!! LoL...
Anyway... Good Luck With Your Treatment, & May you be blessed with little to no sides!! And HOPEFULLY You are seeing a specialist In Atlanta... It's worth the extra drive!
;)
Vicki
Congratulations On Getting Started....
Actually I left you a post many, many threads down, (On the one about the support group in Woodstock)...but it had already been days & I didn't think you'd see it.... If you get a chance, please check it out!
My home is in Forsyth County, however I am currently in Washington State... but being a neighbor, I didn't think it would be polite to not say hello... (I've been here 3 years & so far you & Scuba are the first in my close proximity) That's pretty Cool... & NOPE I wouldn't eat any fish out of Lake Lanier Either... That's For SURE!!!! LoL...
Anyway... Good Luck With Your Treatment, & May you be blessed with little to no sides!! And HOPEFULLY You are seeing a specialist In Atlanta... It's worth the extra drive!
;)
Vicki
Linda K, Im in week 7, started just like you , woke up with chills then went away, first night! never had again, so far . Did experance some anxioty in week 5 (eyes teared up and got emotional, then yelled at wife next day), doc put me on low dose antidepressents, fine now! Also thought i doing something wrong since not getting sick! but week 4 check showed drastic drop in levels! Good luck! To the guy not takin full does ribovirin, I started on 180 pegusys and 1200 ribovirin right of the bat! Want to stay full dose to get every chance I can! Maybe ask Doctor why you not full dose!
Yes, I was born in Oakland and went to school there a hundred years ago. I lived near Montclair, not too bad...but it's a lot different than when I grew up there.
Bug; So you remember me being the sheriff, huh? Too funny, I felt like I had to get my teachers bag out and come up with some rules of civility around here. Dec. 8th, huh? You will be fine! Believe me you will be relieved to start.
Bug; So you remember me being the sheriff, huh? Too funny, I felt like I had to get my teachers bag out and come up with some rules of civility around here. Dec. 8th, huh? You will be fine! Believe me you will be relieved to start.
Make sure you take a trimix bottle and a spare air :-)
For the extra oxigen i mean
Maybe the sea brezze and the saltwater is gonna keep you going
saludos
scuba
For the extra oxigen i mean
Maybe the sea brezze and the saltwater is gonna keep you going
saludos
scuba
The Euro health systems have issues same as ours here, which always seem to act against the patient. Wonder why?
We are heading down to the USVI first week of December. I dive there every year, but this year I might just stay topside. Figure I'd be using air at 2x normal rate, at least. Low HGB still sux.
We are heading down to the USVI first week of December. I dive there every year, but this year I might just stay topside. Figure I'd be using air at 2x normal rate, at least. Low HGB still sux.
Thanks for the tip APK
On tuesday I'll be going to my private doc and ask him about the dosage increase to see if I can manage to get more riba from the social sec. As for now, 800 mg seems like too little riba (I get hardly any sx at all) and HR said that must kick these suckers be4 they're able to mutate..I keep you posted...I didn't want 2 use up my insurance at work but I guess I won't be able to hold it for long. I didn't want to disclose my status at work cause the next day I'll be a lepper (i've seen it happen)..Sorry, but that's how it goes over here...:-(
Hi Lindy
sorry to hear Lake Kanier is also polluted :-( what a drag.
Nowadays I live in Madrid, Spain but I went to college over there in peachtree rd. back in 79 to 82... Good ol days.
Social Security over here is very good I think... For instance, I'm getting my fibroscans here at no charge and I'm not even part of a study. Regarding the eritropoietin, I guess you guys in the States are more advanced in tx protocols and meds combos.
(no wonder if all doctors in the US are like HR, we're 10 years behind)
Supposedly procrit (EPO) here is too expensive and does not enter into the social sec protocol. Neither does the neupogen (they said is only used in hospital emergencies under close supervision because of its own set of sides)... In fact, I asked what would they do if i dropped below 10 and they said they would stop tx or lower dosage but told me not to worry cause I wouldn't fall...I'm FUBAR on this, its my word against a whole group of hepatologists..
I just made my numbers and the SOC over here goes for 10800 euros for a 24 wk TX.. Could it be a money issue since they are giving the meds to all spanish patients that come no matter the background or ss status? maybe
:-(...All the patients I have seen here are coinfected except me
and I saw all the meds they get and the great attention and all and I really understood why these scheme works.. In fact they told me if I wanted to be switched into the GI care and I said:
On tuesday I'll be going to my private doc and ask him about the dosage increase to see if I can manage to get more riba from the social sec. As for now, 800 mg seems like too little riba (I get hardly any sx at all) and HR said that must kick these suckers be4 they're able to mutate..I keep you posted...I didn't want 2 use up my insurance at work but I guess I won't be able to hold it for long. I didn't want to disclose my status at work cause the next day I'll be a lepper (i've seen it happen)..Sorry, but that's how it goes over here...:-(
Hi Lindy
sorry to hear Lake Kanier is also polluted :-( what a drag.
Nowadays I live in Madrid, Spain but I went to college over there in peachtree rd. back in 79 to 82... Good ol days.
Social Security over here is very good I think... For instance, I'm getting my fibroscans here at no charge and I'm not even part of a study. Regarding the eritropoietin, I guess you guys in the States are more advanced in tx protocols and meds combos.
(no wonder if all doctors in the US are like HR, we're 10 years behind)
Supposedly procrit (EPO) here is too expensive and does not enter into the social sec protocol. Neither does the neupogen (they said is only used in hospital emergencies under close supervision because of its own set of sides)... In fact, I asked what would they do if i dropped below 10 and they said they would stop tx or lower dosage but told me not to worry cause I wouldn't fall...I'm FUBAR on this, its my word against a whole group of hepatologists..
I just made my numbers and the SOC over here goes for 10800 euros for a 24 wk TX.. Could it be a money issue since they are giving the meds to all spanish patients that come no matter the background or ss status? maybe
:-(...All the patients I have seen here are coinfected except me
and I saw all the meds they get and the great attention and all and I really understood why these scheme works.. In fact they told me if I wanted to be switched into the GI care and I said:
How are you doing? I am eagerly awaiting tx-not.
Remember when you were the sheriff of this town? Or are you still? Just remembered that post from this summer!
Hope you're feeling good-have a great weekend.
Bug
Remember when you were the sheriff of this town? Or are you still? Just remembered that post from this summer!
Hope you're feeling good-have a great weekend.
Bug
Oh my...how did you do it? I will probably start tx in January and right now my feelings are..there's nooooo way I can poke myself. Just thinking about it makes me cringe. Is it just once a week? Is it a regular syringe type shot? Do you do in your thigh, rear, tummy, or where? I hope everytime goes so wonderful for you and you have continued energy and good health.
Did ya catch a BIG fish? :o)
Did ya catch a BIG fish? :o)
So happy your first shot went well.. I took my third thursday so we arent to far apart.. Hope you have a sx free tx.
Thanks everyone for your encouraging words. I know that worse side effects may grab me at anytime so I will just enjoy feeling OK moment to moment. I have been so sick for the past 2 years believing it would be like that forever that I can do 24 weeks hands down if there is some hope of feeling "normal" again at the end!
sass_blue, sfbay girl - Yes, the waiting to give myself the first shot was VERY anxiety provoking. That was definitely worse than the actual injection.
sfbaygirl - That comment about the jumanji game freaks me out a bit - that movie freaks me out! :) Your screen name suggests you are connected to SF Bay Area - do you live there? I was born in Oakland and grew up there - on the Oakland side near Richmond. Tough place to grow up in back then. After 30 some odd years I still miss it though.
poptartpossum - I was like you - couldn't even think about poking myself. I am using Pegasys prefilled syringes and it was really easy and painless. But you will still be anxious until afer you actually do it. I did my first in the thigh.
scubadiver30 - Oh don't worry fishing is just something to DO - it's not about actually catching a fish (although that would be nice) no one would eat fish out of Lake Lanier either - just as polluted as everywhere else. Most of us are even squeamish about swimming there. My daughter goes to Canoe and Kayak Camp a couple of weeks each summer and I worry about what kinds of bateria I am exposing her to! So how come your doc won't prescribe Procrit? That seems crazy - so what will he do if you drop - pull you off tx? It just doesn't make sense. I don't think my doc will let me go 48 weeks if I'm UND at 12 weeks and beyond. He's pretty much a by the SOC book kind of guy. Anyway, you were right about the 1st injection and it gave me the courage to go ahead this week. Cancun sounds great - maybe we should have a Hepper Party down there - everyone can come, SVR's, relapsers, even those who are treating if they feel up to it - that would be a blast! :) Tell me again where you are living now?
sass_blue, sfbay girl - Yes, the waiting to give myself the first shot was VERY anxiety provoking. That was definitely worse than the actual injection.
sfbaygirl - That comment about the jumanji game freaks me out a bit - that movie freaks me out! :) Your screen name suggests you are connected to SF Bay Area - do you live there? I was born in Oakland and grew up there - on the Oakland side near Richmond. Tough place to grow up in back then. After 30 some odd years I still miss it though.
poptartpossum - I was like you - couldn't even think about poking myself. I am using Pegasys prefilled syringes and it was really easy and painless. But you will still be anxious until afer you actually do it. I did my first in the thigh.
scubadiver30 - Oh don't worry fishing is just something to DO - it's not about actually catching a fish (although that would be nice) no one would eat fish out of Lake Lanier either - just as polluted as everywhere else. Most of us are even squeamish about swimming there. My daughter goes to Canoe and Kayak Camp a couple of weeks each summer and I worry about what kinds of bateria I am exposing her to! So how come your doc won't prescribe Procrit? That seems crazy - so what will he do if you drop - pull you off tx? It just doesn't make sense. I don't think my doc will let me go 48 weeks if I'm UND at 12 weeks and beyond. He's pretty much a by the SOC book kind of guy. Anyway, you were right about the 1st injection and it gave me the courage to go ahead this week. Cancun sounds great - maybe we should have a Hepper Party down there - everyone can come, SVR's, relapsers, even those who are treating if they feel up to it - that would be a blast! :) Tell me again where you are living now?
Hi Lindy, and congratulations for getting through your first shot.
I'm glad you were able to go fishing afterwards..that is awesome!!!! I hope you feel the same way every week, and have little to no sides.
P.S. Don't get nervous if you don't have any sx after your second shot. I didn't have the same sx with my second shot & I drove myself nuts wondering if I did something wrong. I didn't.
-E
I'm glad you were able to go fishing afterwards..that is awesome!!!! I hope you feel the same way every week, and have little to no sides.
P.S. Don't get nervous if you don't have any sx after your second shot. I didn't have the same sx with my second shot & I drove myself nuts wondering if I did something wrong. I didn't.
-E
Sounds like you are off to a great start, Lindy. Fishing on the first day of TX is not too shabby at all! We're with you for a smooth TX with low SX and certain SVR at the end.
Hey Scuba, its not a given that 1200 Riba will shoot you into anemia. There are some who take the full Riba dose and maintain HGB above or right on the magic 10. From what I've read, the Riba has its greatest effect in the early phases of TX. If you were in reasonable shape prior to TX, you should think about full dose Riba. Regular CBCs will be required in any case, so you will be able to monitor the level and trend of your HGB and to consider dose reduction IF your level drop precipitously.
FWIW, mine dropped from around 14 to 10 in 60 days. Its bounced around 10 ever since - no Riba dose reduction or rescue drugs required. Maybe give it a shot?
Hey Scuba, its not a given that 1200 Riba will shoot you into anemia. There are some who take the full Riba dose and maintain HGB above or right on the magic 10. From what I've read, the Riba has its greatest effect in the early phases of TX. If you were in reasonable shape prior to TX, you should think about full dose Riba. Regular CBCs will be required in any case, so you will be able to monitor the level and trend of your HGB and to consider dose reduction IF your level drop precipitously.
FWIW, mine dropped from around 14 to 10 in 60 days. Its bounced around 10 ever since - no Riba dose reduction or rescue drugs required. Maybe give it a shot?
Hi there in Lake Lanier
That's a treat. To be able to go fishing on the weekend wow...That's supercool. :-) Over here the rivers are so polluted that probably trouts have 3 tails and glow in the dark. ;)
As sson as I finish I'm gonna buy me a ticket to Cancun and dive for a month jejejeej
You see? I told you the first shot was nothing to worry about. I still feel ok, the Riba affected my taste buds (but I still haven't experience rage or rash) My sinuses are a bit dry but I'm using saline solution to counteract it. I wonder, how long before the hemoglobin drops?
I'm taking 2 600mg ibuprofen in the morning even if I feel no pain and it is working so far.
My friends told me to increase the riba to 1200 but since my doc said procrit was out of the question, I don't want to push the envelope too much...
I do hope the rest of TX is like this, because if it is, I'm going to go for the 48 weeks...
I pray to God our sx are mild...
Saludos my Georgia friend
scubariba
That's a treat. To be able to go fishing on the weekend wow...That's supercool. :-) Over here the rivers are so polluted that probably trouts have 3 tails and glow in the dark. ;)
As sson as I finish I'm gonna buy me a ticket to Cancun and dive for a month jejejeej
You see? I told you the first shot was nothing to worry about. I still feel ok, the Riba affected my taste buds (but I still haven't experience rage or rash) My sinuses are a bit dry but I'm using saline solution to counteract it. I wonder, how long before the hemoglobin drops?
I'm taking 2 600mg ibuprofen in the morning even if I feel no pain and it is working so far.
My friends told me to increase the riba to 1200 but since my doc said procrit was out of the question, I don't want to push the envelope too much...
I do hope the rest of TX is like this, because if it is, I'm going to go for the 48 weeks...
I pray to God our sx are mild...
Saludos my Georgia friend
scubariba
Congrats! You did it. I want to sing the Dora song now. LOL I bet the waiting was worse than the shot? Welcome to the jumanji game, we are here when you need us!
Thats great Linda...I think the anxiety of the unknown can be the worst thing with your first shot. Hopefully it is smooth sailing for you on tx...lucky to go fishing..my favourite pasttime
I too hope to be starting soon. Thanks for writing and keeping us updated on your progress.
That is great, Linda! (and you even got up and went to the lake with your kids and grandkids for some fishing :) I hope your treatment will go well for you. Keep us posted. Best of luck.
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