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Treatment considerations; Newbies; Scott; MikeSimon; TnHepguy; All
To those considering treatment: When reading this forum regarding tx sx, please consider the age of the virus in those posting. I was diagnosed with HCV in within 12 - 18 mos of having contracted the virus. (Life Ins blood test results neg). I am taking PegIntron/Riba, I am a 48 yr old female and my sx effects are minimal, I am slightly anemic which accounts for the fatigue I sometimes feel, but other than that, I am doing fine. If you are recently diagnosed and considering tx, ask about the age of the virus in the person posting severe sx; I think it should be a serious factor expecially if you find yourself afraid to begin tx. I am 18/48. If sx deteriorate for me, I will definitely post them but from my personal experience, tx is a breeze so please don't be afraid to ask more questions before you decline tx. I was clear at 12 weeks; so far, so good.
To those suffering severe sx: You all know from my posts here that my heart goes out to each and everyone of you and I wish everyone minimal sx and SVR. I'm not usually very sentimental about people I don't know but I find I really care for each and everyone of you here and I don't want to minimalize what you are going through. I hope you all understand that, but people considering tx need to know that tx isn't always bad for everyone.
Chevy & Cuteous posted earlier about severe sx being the result of hosting the HC virus for many years, does anyone know of any published studies on this issue? Please forgive me if I missed an earlier post on this subject.
Kindest regards to all:)
To those suffering severe sx: You all know from my posts here that my heart goes out to each and everyone of you and I wish everyone minimal sx and SVR. I'm not usually very sentimental about people I don't know but I find I really care for each and everyone of you here and I don't want to minimalize what you are going through. I hope you all understand that, but people considering tx need to know that tx isn't always bad for everyone.
Chevy & Cuteous posted earlier about severe sx being the result of hosting the HC virus for many years, does anyone know of any published studies on this issue? Please forgive me if I missed an earlier post on this subject.
Kindest regards to all:)
I have seen a big change in the reality of the sides and how folks handle them since I have been here. Back when Peg/Intron first came out a bunch of us jumped at getting on it right away. It seemed that we were almost all hit VERY hard by the sides. Our main topic back then was "The Truck". It seemed to run us over every week. after about 10 weeks on tx the sides leveled out for most of us. We all seemed to have a hard time.
The the Pegasys came along. The sides seemed to be a LOT less severe and it was equally effective or better in the SVR dept.
Now it seems that even the Peg/Intron users are doing pretty well too. I'm thinkin that maybe the docs are getting better at helping us with the sides and keeping our doses up. They didn't help us much in the early days.
After seeing Chevy last weekend I was surprised at how good she looked for being on tx. She showed me the little bumps on her chest....No, not THOSE bumps....but the little red ones that some of us get. I had bumps all over my upper body on my tx and they itched like crazy. But I had to look really close to even see hers at all. Now when I look at a womans chest I usually look at THOSE bumps, but I was so surprised at her lack of sides that I had to look really hard to even see the little red ones that she kept showing me.....so hard that I missed my "normal" chest inspection.....hahahahaha I was also surprised at her eyes. I stared at them a lot. They actually had life in them. Mine were always half closed on my tx. The point is that she looked MUCH better than I expected for someone on tx. Between the Pegasys and the docs helping I think the difference is striking now. My brother even commented to the same thing as he had watched me go through my tx. I think the whole situation is improving.
Hey Tallblonde.....
Watch out for that Duck. We have some around here. They can be mean....and they try to sell you life insurance....Aflack!
Happy Birthday Mike. Nice to still be havin em hey? If you saved all your Peg boxes we could celebrate with a bonfire that they could see from the Space Shuttle! Hang in there......the end is Near!
The the Pegasys came along. The sides seemed to be a LOT less severe and it was equally effective or better in the SVR dept.
Now it seems that even the Peg/Intron users are doing pretty well too. I'm thinkin that maybe the docs are getting better at helping us with the sides and keeping our doses up. They didn't help us much in the early days.
After seeing Chevy last weekend I was surprised at how good she looked for being on tx. She showed me the little bumps on her chest....No, not THOSE bumps....but the little red ones that some of us get. I had bumps all over my upper body on my tx and they itched like crazy. But I had to look really close to even see hers at all. Now when I look at a womans chest I usually look at THOSE bumps, but I was so surprised at her lack of sides that I had to look really hard to even see the little red ones that she kept showing me.....so hard that I missed my "normal" chest inspection.....hahahahaha I was also surprised at her eyes. I stared at them a lot. They actually had life in them. Mine were always half closed on my tx. The point is that she looked MUCH better than I expected for someone on tx. Between the Pegasys and the docs helping I think the difference is striking now. My brother even commented to the same thing as he had watched me go through my tx. I think the whole situation is improving.
Hey Tallblonde.....
Watch out for that Duck. We have some around here. They can be mean....and they try to sell you life insurance....Aflack!
Happy Birthday Mike. Nice to still be havin em hey? If you saved all your Peg boxes we could celebrate with a bonfire that they could see from the Space Shuttle! Hang in there......the end is Near!
I've had hep c for probably 35 years. By the way I turned 55 Thursday. This is my 3rd tx. First was regular interferon 3 x per week plus 800 mg. ribavirin. The sides were rough. Second round was Pegintron at reduced dose and 800 mg. ribavirin and the sides were quite bad, maybe worse than the regular interferon. This time it's Pegasys at 180 mcg.(full dose) and 1000 mg. ribavirin and it has been fairly easy. I do have anemia and low platelets but I think that is typical of transplant recipients. Other than that I have no complaints and it's been 70 weeks of this last round. That's it. Mike
this is really a great discussion especially for us about to start tx. I had been worried that since I am not a vegaterian I may have more problems.
Chevy,
you are always so optimistic that your words convey positive attitude right through the computer, honestly reading alot of what you have written about has made me feel like this can and will clear for me too.
Scott,
you just blow me away with your commitment to kill the dragon. so much tx for so long and still going strong and helping everyone with words of encouragement and data lots of data. It certainly makes it easier to weed out the old from the new.
tuna
congrats on finishing are you currently clear? I hope so.
snook,
not sure if I am remembering correctly but I hope your mom finds a doc that will treat her.
Ameribrit,
I hope my sx are as good as yours have been I am preparing for worse but hoping for the better.
have a great weekend all
Chevy,
you are always so optimistic that your words convey positive attitude right through the computer, honestly reading alot of what you have written about has made me feel like this can and will clear for me too.
Scott,
you just blow me away with your commitment to kill the dragon. so much tx for so long and still going strong and helping everyone with words of encouragement and data lots of data. It certainly makes it easier to weed out the old from the new.
tuna
congrats on finishing are you currently clear? I hope so.
snook,
not sure if I am remembering correctly but I hope your mom finds a doc that will treat her.
Ameribrit,
I hope my sx are as good as yours have been I am preparing for worse but hoping for the better.
have a great weekend all
Just anecdotyl but a clos friend did 48+ geno I not cleaar at 12 but becausr it was a trial they continued 1 post tx bright as a button all hair back suffered few sx never missed a day of work.
And at 40 she looks around 20-22 *itch.
She contracted through needle stick as a burns nurse. Found out whenshe went to pick up a picture from a passport booth,someone had planted a use needle where the photos come . But the hcv had been there for some time. Got to be worth a shot eh?
And at 40 she looks around 20-22 *itch.
She contracted through needle stick as a burns nurse. Found out whenshe went to pick up a picture from a passport booth,someone had planted a use needle where the photos come . But the hcv had been there for some time. Got to be worth a shot eh?
Happy birthday Mike. I like to refer to you as "Iron Mike". However, Scott is giving you a run for your money! You guys are like the Energizer bunny....just keep going and going and going. I bow to each of you for your determination, courage and thoughtful comments regarding HepC.
Happy Birthday Mike!! Great Day...June 3rd,, LOL My hubby's birthday and he just turned the big "50"! We had a little party for the old man haha Hope you did it upright also!!
I am so envious of your committment to a healthy diet. I take my shot and swallow my pills, drink rivers of water and have not touched alcohol since being diagnosed (I always drank a glass of wine with dinner, but food is so hard for me. I don't eat meat, don't care for vegetables and would rather muck out a stall than cook. I ate a glazed do-nut for breakfast; and then a sticky bun, a handful of peanuts, and strawberry twizzlers for lunch. I do try to eat fish every once in a while.. The irony is, I am not overweight, my skin is reasonably good and I look very healthy despite the garbage I eat. I admit I am concerned that my poor food choices might have a negative effect on ultimate SVR; Chevy, you are my hero when it comes to taking care of your body. You shouldn't be having such a hard time with sx; I am sorry....:(
I hope today is a good one for you.
I hope today is a good one for you.
As for me, well...
I am realatively POSITIVE that I got the 'virus' from a blood transfusion in 8/1981. So, I have had (or I had) the virus for nearly 23 years.
I started treatment on 1/16/04. Took shot 21 of 48 yesterday morning, then spent the day outside, working in my yard and working on a fence and stuff. Stayed busy all day, went to a movie last night, got home and went to be about midnight last night.
Anyhow, this is just to say that my sides have been very minimal so far ... a little anemia, no fatigue but I do get short of breath at times.
The one thing I do find really interesting about Ameribrit's original post is that she is on PegIntron and has no sides. From my experience reading these postings, this is indeed a RARE occurance.
However, my opinion (& that is what this is, my opinion only) is that side effects are mostly correlated to a person's health condition BEFORE treatment, and the amount of liver damage that he or she has experienced. It does seem that people with more liver damage have a harder time with the treatment {could this have a basis in the fact that the liver helps to eliminate and dissipate the meds from the system, and thus if the liver is more damaged, it COULD be that the body is having a more difficult time in eliminated and dealing with teh medications???}
Another issue for Mikesimon, could this (the stage of liver damage) be the reason for your varying degrees of side effects? The first treatments when you had severe side effects you had a more severely damaged liver, correct? Now, after your transplant you liver is in better condition, so you have less side effects? (Of course, the Pegasys versus the Peg-Intron also makes a difference)
I am realatively POSITIVE that I got the 'virus' from a blood transfusion in 8/1981. So, I have had (or I had) the virus for nearly 23 years.
I started treatment on 1/16/04. Took shot 21 of 48 yesterday morning, then spent the day outside, working in my yard and working on a fence and stuff. Stayed busy all day, went to a movie last night, got home and went to be about midnight last night.
Anyhow, this is just to say that my sides have been very minimal so far ... a little anemia, no fatigue but I do get short of breath at times.
The one thing I do find really interesting about Ameribrit's original post is that she is on PegIntron and has no sides. From my experience reading these postings, this is indeed a RARE occurance.
However, my opinion (& that is what this is, my opinion only) is that side effects are mostly correlated to a person's health condition BEFORE treatment, and the amount of liver damage that he or she has experienced. It does seem that people with more liver damage have a harder time with the treatment {could this have a basis in the fact that the liver helps to eliminate and dissipate the meds from the system, and thus if the liver is more damaged, it COULD be that the body is having a more difficult time in eliminated and dealing with teh medications???}
Another issue for Mikesimon, could this (the stage of liver damage) be the reason for your varying degrees of side effects? The first treatments when you had severe side effects you had a more severely damaged liver, correct? Now, after your transplant you liver is in better condition, so you have less side effects? (Of course, the Pegasys versus the Peg-Intron also makes a difference)
Yeah,,,I have tried to figure out why some have severe sides, minimum and then others,,,none at all. However,,,Audreywald had severe sides and her bx showed little damage so I'm thinking there is no rhyme or reason to how it will effect you.
I smiled when I read that you'd rather "muck out a stall." I literally just got done doing that a few minutes before turning on the computer.
I'm a born and bred city girl who now lives in the country. We have two horses -- a 3-year-old Paint and a 20-year-old quarterhorse. I love 'em both and I really enjoy taking care of them. Oddly enough, mucking the stalls is one of my favorite things to do! Very relaxing. Remember that Jerry Seinfeld episode when George talks about "manure"? It really does smell kind of good!
Susan
I'm a born and bred city girl who now lives in the country. We have two horses -- a 3-year-old Paint and a 20-year-old quarterhorse. I love 'em both and I really enjoy taking care of them. Oddly enough, mucking the stalls is one of my favorite things to do! Very relaxing. Remember that Jerry Seinfeld episode when George talks about "manure"? It really does smell kind of good!
Susan
aren't we lucky to have these animals in our lives? I agree with you, they smell great:). I am going out on a trail ride at 3;30pm today, hopefully the rain will hold off; are you riding, too?
Just finished tx (48-48 ) I'm 58 yrs. and have hep-c for at least 30 yrs. My sides were not to bad as others I've read about on this site so I don't think age and length has much to do with it. Everyone re-acts differnt. Thats just my veiw.
A trail ride sounds great. I'm not riding today; it's already raining here. Our 20-year-old quarterhorse is rideable, but the Paint isn't broke yet. We're sending her off to the trainer in a few months. My husband and I a both huge animal lovers. In addition to the horses, we have three dogs, two cats, six chickens, and a duck!
Susan
Susan
My husband had the virus more than 20 years, completed treatment twice and had minimal sx during treatment.
I've had hep c for @least 25yrs-maybe from 1967 blood products transfusion-not whole blood so I'm not sure if that was the source of infection. I had an esophogal bleed and coma from ammonia build up-extreme encephalopathy-before I was dx. So,I just breezed thru tx, cl'ed early, never had add'l Rx's. Just goes to show you never can tell.
<b>Happy Birthday, Mike!!!</b>
May God grant you many years!
Amerabrit - Glad to hear you are continuing to do so well on tx!
TnHepGuy
May God grant you many years!
Amerabrit - Glad to hear you are continuing to do so well on tx!
TnHepGuy
I have noticed that there has only been a small handful that have been to forum that has experienced severe sides. As far as the rest of,,,there is definitely sides with this medicine and its just annoying little things that you are not use to. I think everyone is still carrying on full regular schedule and you might just tire easier by end of day. I can't even imagine if you didn't have any sides at all such as hair loss, fatigue, or the wonderful riba rash haha because this is some powerful stuff that is going into our bodies. I asked my dr if the people he was treating,,,any were side free,,,He says no but just minimum sides that can be annoying and make you feel not up to par. I feel you are very lucky if you have ever checked all the symptoms of interferon which consists of about 20 and you have not experienced any but most will realistically experience half to 3/4 during their time. Not all at same time but spaced out.
Happy Birthday Mike,May you have many more.And all virus free!As always best of luck to ya..
Stevo..
Stevo..
I had all the sides except mouth sores. Yesterday I was offically dx with fibromyalgia. The brain fog and my cognative ability is not so good. So. I"m just rolling with the flow.
OHC good to see you back in circulation.
OHC good to see you back in circulation.
Sorry to hear about your fibromyalgia,,,When did you finish tx and are you svr? Does anyone else in your family have fibromyalgia or do you feel this is from tx? I had read somewhere that this could be also heriditary.
I am going on 4 months post tx. 48 wks of peg intron and riba. Was undetectable at 12 weeks and after tx ended. I had mild aches and pains before tx. They got worse during tx. and have not eased up much at all. no one in my immediate family has FM. I did find out today that a 2nd cousin has it.
However, I'm blessed to have a positive easy going outlook on life. And I have a wonderful family. (my husband and son are both easy going too!!)
Happy Trails !!
However, I'm blessed to have a positive easy going outlook on life. And I have a wonderful family. (my husband and son are both easy going too!!)
Happy Trails !!
Happy Birthday, Mike, and many happy, healthy returns.
Regards, M.N.
I'm not sure what makes tx rough or smooth, but there are many unique factors with each person. Some have a disposition to anemia, some have autoimmune things that haven't manifested previously, some have sensitive gi-tracts, some have more stress in their lives... Most of us manage it, and some are luckier than others. Make the most of every good day, every good hour. And laugh when you can.
Maj Neni
Regards, M.N.
I'm not sure what makes tx rough or smooth, but there are many unique factors with each person. Some have a disposition to anemia, some have autoimmune things that haven't manifested previously, some have sensitive gi-tracts, some have more stress in their lives... Most of us manage it, and some are luckier than others. Make the most of every good day, every good hour. And laugh when you can.
Maj Neni
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