Medical Forum / Diseases and Disorders / Hepatitis / August 2006
Side effects of TX and lasting side effects
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Barbara - 17 Aug 2006 08:25 GMT Hi all, Someone on another board posted all the side effects from the drugs given for tx and at the bottom it said some side effects could lead to death, some were irreversible, some would go away after 8 weeks. The side effects listed were horrific. It really freaks me out. I'd like to know how those who took tx felt when seeing that long list of side effects. I haven't had my biopsy yet but should I require tx soon, I am scared to death of those drugs, just from reading that list. How did you reconcile this with yourselves? I've also heard people mention their lasting side effects like cataracts, arthritis, loss of concentration, and other things, that also freaks me out. Thanks for any responses. Barbara
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bob - 17 Aug 2006 10:09 GMT >Hi all, >Someone on another board posted all the side effects from the drugs given [quoted text clipped - 9 lines] >Thanks for any responses. >Barbara Wow. Now I'm freaked out. I start tx tomorrow.
All drugs have a list of horrible side effects. Usually they don't occur. Not all of them anyway (I hope)..
mags - 17 Aug 2006 13:56 GMT Good luck with your treatment Bob. How long are you treating for? It seems men do a little better as their muscle mass doesn't disappear as fast as a woman.
Mags
> >Hi all, > >Someone on another board posted all the side effects from the drugs given [quoted text clipped - 14 lines] > All drugs have a list of horrible side effects. Usually they don't > occur. Not all of them anyway (I hope).. bob - 17 Aug 2006 15:15 GMT >Good luck with your treatment Bob. How long are you treating for? It >seems men do a little better as their muscle mass doesn't disappear as >fast as a woman. Hi Mags
I have type 1a. It's 48 weeks for me.
Geesh, my muscle mass is going to disappear too? From what I've read here it sounds as if I'm going to end up skinny, blind, bald, angry, forgetful and depressed. Hopefully virus free.
>Mags >> [quoted text clipped - 16 lines] >> All drugs have a list of horrible side effects. Usually they don't >> occur. Not all of them anyway (I hope).. Sara - 17 Aug 2006 15:37 GMT giggling here...
beats the alternative tho, eh Bob? :))
sadly, I am beginning to realize I won't see the 'skinny' part of that list.
SIGH
Sara
>>Good luck with your treatment Bob. How long are you treating >>for? It [quoted text clipped - 43 lines] >>> don't >>> occur. Not all of them anyway (I hope).. mags - 17 Aug 2006 16:05 GMT You catch on fast Bob! Now don't forget the nasty diarrhea as we become prone to accidents. Surprised Russ hasn't warned you lol.
Mags good luck Bob
> >Good luck with your treatment Bob. How long are you treating for? It > >seems men do a little better as their muscle mass doesn't disappear as [quoted text clipped - 28 lines] > >> All drugs have a list of horrible side effects. Usually they don't > >> occur. Not all of them anyway (I hope).. Ernie & Eythl - 18 Aug 2006 01:34 GMT bob said:
>> Good luck with your treatment Bob. How long are you treating for? It >> seems men do a little better as their muscle mass doesn't disappear as [quoted text clipped - 7 lines] > here it sounds as if I'm going to end up skinny, blind, bald, angry, > forgetful and depressed. Hopefully virus free. Just wait until yer dink falls off in the middle of treatment. BOY, is THAT ever fun.
Ernie <The man on the hill with a mountainous load in his shorts>
bob - 18 Aug 2006 02:36 GMT >bob said: >> [quoted text clipped - 12 lines] >Just wait until yer dink falls off in the middle of treatment. BOY, is >THAT ever fun. That's okay, I'm not using it anyway.......
>Ernie ><The man on the hill with a mountainous load in his shorts> Sara - 17 Aug 2006 15:35 GMT No freaking out allowed :) You CAN do this, Bob :)
Welcome to the world of Dragon Killing :)
Sara
> On Thu, 17 Aug 2006 00:25:09 -0700, "Barbara" > <barbarac102@yahoo.com> [quoted text clipped - 26 lines] > don't > occur. Not all of them anyway (I hope).. Barbara - 17 Aug 2006 17:35 GMT Hi Bob, Sorry, I didn't mean to freak you out. I wish you well in your tx. Let us know how it goes.
My best wishes, Barbara
> >Hi all, > >Someone on another board posted all the side effects from the drugs given [quoted text clipped - 14 lines] > All drugs have a list of horrible side effects. Usually they don't > occur. Not all of them anyway (I hope).. mags - 17 Aug 2006 13:54 GMT Hi Barbara. I think I was in the top 10 for side effects. I finish my 48th week of TX on Tuesday. When I first found out I had Hep C - I panicked. I live in Canada and the blood system was tainted and many people died from Hep C. I would rather have some life than none - that is how I reconciled it. If your geno 2 and 3 you probably will get off lucky - its the long haulers that truly suffer when they are prone to side effects. Will let you know after treatment if there is any lasting effects.
Mags the only choice I had was life
> Hi all, > Someone on another board posted all the side effects from the drugs given [quoted text clipped - 11 lines] > > -- Sara - 17 Aug 2006 15:39 GMT Mags is our hero, Barb :) She's truly been to hell over the past 12 months, and is just starting to find her way back out now.... But she stuck it! She is one awesome cookie :)
Sara
> Hi Barbara. I think I was in the top 10 for side effects. I > finish my [quoted text clipped - 37 lines] >> >> -- mags - 17 Aug 2006 16:04 GMT Oh Sara - gotta love you. Thanks for your kind words. I will be here for you all the way girl.
Mags
> Mags is our hero, Barb :) She's truly been to hell over the past > 12 months, and is just starting to find her way back out now.... [quoted text clipped - 43 lines] > >> > >> -- Barbara - 17 Aug 2006 17:23 GMT Mags, I understand and I wish you well and good health and no lasting side effects. Thanks for your response.
Best wishes, Barbara
> Hi Barbara. I think I was in the top 10 for side effects. I finish my > 48th week of TX on Tuesday. When I first found out I had Hep C - I [quoted text clipped - 23 lines] > > > > -- .
Sara - 17 Aug 2006 15:34 GMT well Barb, the bottom line for me was that I already had liver damage, and if I just kept on going as I had been for the last 30 years, I'd be needing a liver transplant sooner or later, or I'd die from cirrosis.... I didn't like either of those alternatives!
I also was so fed up with being tired all the time, I figured it would be worth it just to feel like a human being with some energy again!
Every medicine we put in our body has side effects. The Hep-C tx can have some pretty brutal consequences,but so can most any other drug we take for our health problems. MOST people do not get the really bad/fatal sides tho. and MOST of the Hep-C doctors/nurses I've heard about keep a really good watch on us and if things get too rough/dangerous they will pull us off the tx.
I've read some stories of living with liver cirrosis. I can only hope I never have to go there -- thankfully, if this tx doesn't take care of the virus, there are many new treatments on the horizon that I'll be standing in line for to try to beat the dragon.
But so far, I'm responding well to the drugs, the virus is undetectable in my body, and my liver enzymes are back to normal. That's after almost 19 weeks of tx.... still 29 more to go! I am determined that these drugs WILL take care of the problem, and I will get my SVR when all is said and done :))
you know, you can obsess and worry and make yourself even sicker with anticipation, or you can choose to trust your doctors and make a decision to kick dragon a.s. Attitude is so important in these battles.. you just gotta believe :) My mantra for this treatment is: "I think I can..... I think I can.... I THOUGHT I COULD!"
In the immortal words of my then- 4 yr old daughter when I was trying to decide which card to play in a bridge game:
"Just DO it, Mom!"
Love to you, hope you find some answers soon that will give you peace. I do have some books here I'd be willing to send you if you are interested.... if so, just email me at:
puffler at wowway dot com
with your address and I'll get them in the mail to you very soon!
take care Sara
> Hi all, > Someone on another board posted all the side effects from the [quoted text clipped - 18 lines] > > -- mags - 17 Aug 2006 16:01 GMT Right on Durango! Well said.
Mags changing my mind about the riba
> well Barb, the bottom line for me was that I already had liver > damage, and if I just kept on going as I had been for the last 30 [quoted text clipped - 71 lines] > > > > -- Barbara - 17 Aug 2006 17:33 GMT Hi Sara, Thanks for your reply. I do understand if you have liver damage and high enzymes and feel sick and tired all the time that you would feel quicker to treat. I wish you well and that you clear the virus. For me, I'm struggling with anticipation and haven't even had the biopsy yet. My enzymes have been normal for the 10 years I've been testing and I don't have symptoms. I just went for an ultrasound and will schedule for a biopsy and will see from there. Thanks for your post and wish you the very best.
Barbara
> well Barb, the bottom line for me was that I already had liver > damage, and if I just kept on going as I had been for the last 30 [quoted text clipped - 71 lines] > > > > -- mags - 17 Aug 2006 18:26 GMT MY BCLD told me that normally they wouldn't treat people who where not at stage 3 or 4 but literature is showing the earlier you treat the better chances of survival or slaying the dragon will be. Also the younger you are the better your chances.
Mags Geno 1b damage mild 1
> Hi Sara, > Thanks for your reply. [quoted text clipped - 85 lines] > > > > > > -- Barbara - 17 Aug 2006 19:27 GMT Isn't stage 4 cirroshis? I would think they would agree to treat anyone who was willing and had the disease.
Barbara
> MY BCLD told me that normally they wouldn't treat people who where not > at stage 3 or 4 but literature is showing the earlier you treat the [quoted text clipped - 94 lines] > > > > > > > > -- Paul - 18 Aug 2006 09:17 GMT On Thu, 17 Aug 2006 00:25:09 -0700, "Barbara" <barbarac102@yahoo.com>,
>Hi all, >Someone on another board posted all the side effects from the drugs given [quoted text clipped - 9 lines] >Thanks for any responses. >Barbara I didn't need to look. I witnessed someone die on tx a few weeks before I was diagnosed. It was probably as a result of auto-immune hepatitis caused by the treatment. Don't let that put you off though. The cause was unproven and a pretty rare thing to happen. I reconciled it by weighing up how I felt about being the carrier of a potentially infectious disease as against a good chance of clearing it. Also, I figured that such a rare thing was unlikely to happen to much by definition. The possible (and I must stress "possible") side effects are in the public domain but it is very unlikely that someone will get all of them or even most of them.
Have a look at http://www.pegassist.com/pub/utilities/safety.asp and read the warning there.
I'm not trying to put anyone off from treating but I do feel that potential treaters should be fully informed.
Abby - 18 Aug 2006 15:51 GMT > On Thu, 17 Aug 2006 00:25:09 -0700, "Barbara" <barbarac102@yahoo.com>, > [quoted text clipped - 30 lines] > I'm not trying to put anyone off from treating but I do feel that > potential treaters should be fully informed. This is for anyone diagnosed with Hep C who is offered treatment. I'm Geno 3 and to make a real long story short because I have good news for you - here goes. Today I'll do my 9th injection and then I'll only have 15 more to go to complete the 24 weeks of tx. As far as side effects go, I have had a few bouts with diarhea, mild to severe anxiety, a few crazy dreams and sleepless nights, a wierd little rash on the top of both my feet, lost about 10 pounds at first and have gained back 5. I have had some episodes of lower leg and foot circulation and I still don't know what that's about and if it continues or becomes worse I'll tell a doctor. In the very beginning of treatment my periods started back and I had terrible PMS. That happened to me on weeks 3 and 4 and now its back to what it was - nothing. (I'd been free from that for about a year) This week I began to notice the fatigue people speak of on tx and you'll know it if it hits you its like no other tiredness I've ever had. It is this - walking up four flights of steps and you are only half way there and you don't know if you have the energy to get to the top and you don't want to give in and go back down and wait for the elevator. I couldn't figure out why my Dr. told me he would prefer it if I took it easy on weight training and kickboxing and now I now why. I'd probably injure myself from trying to do what I used to do. So, I'll be lazy and wait for this to be over - I've missed out on workouts for long periods of time before -usually due to feeling lousy from symptoms of Hep C! Hmmm what else - yesterday I noticed I was peeling around my ankles. That's from a little bit of sun I got while on vacation and yes - I did go on vacation with the meds and had a great time - felt wonderful. And, last night I was up at 3:00 a.m. with a head ache. I took two aspirin with oj and went back to bed. (Dhaaa!) Probably, the worst part of all of this has been my Dr. He's an a.s and I will probably ask my family physician who I really like to monitor me from here on out if there are no serious problems. He wanted me to see a specialist, I did see the guy a few times, he's an a.s and I don't wanna see him anymore. I wonder if the anxiety comes from this Dr. Anyway - enough of that don't want to waste time whining although people that know me would get a good laugh from that last statement! The way I look at this thing now is I wish I'd never researched Hep C after I was dxed. I panicked from what I read online. I went into denial and caused myself more liver damage. I am between a stage 2 and stage 3 of fibrosis. I think we need to look at it this way - you have a life threatening disease but there is a treatment. Percentage wise - we have a great opportunity to be rid of this disease and reverse some to all damage done. Why hesitate? Go for it! If it becomes too terrible we can chose to quit. But I don't know of anyone who would chose to die from liver disease. Its the worst. Good luck to you and everyone here going through this. Peace & Love - Abby
Barbara - 18 Aug 2006 17:21 GMT Thanks Abby for your response. I'll know for sure after my biopsy, at least I hope I'll know what to do...I think it should be clear to me by then. Best wishes to you, Barbara
> > On Thu, 17 Aug 2006 00:25:09 -0700, "Barbara" <barbarac102@yahoo.com>, > > [quoted text clipped - 76 lines] > liver disease. Its the worst. Good luck to you and everyone here > going through this. Peace & Love - Abby Burke Gilman - 18 Aug 2006 18:55 GMT > > On Thu, 17 Aug 2006 00:25:09 -0700, "Barbara" <barbarac102@yahoo.com>, > > [quoted text clipped - 76 lines] > liver disease. Its the worst. Good luck to you and everyone here > going through this. Peace & Love - Abby Patient presented to clinic with chronic hepatitis C infection. Counseled on treatment options. Pt refuses treatment. Endorses history alcoholism, IDU, codependency. States she just wants to help.
Barbara - 18 Aug 2006 17:24 GMT Yeah, I read the posible side effects and that's what freaked me out. I don't like hearing death as a side effect and irreversible side effects. Anyone you get my drift. I wish you the very best. Thanks, Barbara
> On Thu, 17 Aug 2006 00:25:09 -0700, "Barbara" <barbarac102@yahoo.com>, > [quoted text clipped - 30 lines] > I'm not trying to put anyone off from treating but I do feel that > potential treaters should be fully informed. kjoh - 18 Aug 2006 19:41 GMT Hi Barbara. I have been thinking about your question for two days. I ended my year of treatment six months ago. I relapsed at three months. I believe I am still having memory and concentration problems caused by tx, but they have improved markedly since I stopped.. In the weeks before tx I spent long hours researching the disease and I read many medical/technical articles. I remembered what I read and was able to synthesize the info and talk with my docs about it. By 12 weeks into treatment I lost the ability to understand and remember what I was reading. Three months post-tx I still had problems and was convinced that I would have permanent comprehension and memory problems, but I find myself gradually prowling the med lit again, and yesterday I was back at it for several hours. So whaddya know! Still improving! The brain can rewire itself. I became measurably malnourished during tx, so of course that didn't help.
My thyroid was managably underactive (hypothyroid) for years before tx and it wanked around pretty badly from the combo chemicals. For the most part, it has returned to its usual pre tx behavior, and my med doses for that are similar now, so I don't think there was any permanent damage to my thyroid.
My anxiety and depression and semi-paranoia on tx were brutal. Those problems improved right away after stopping tx. Whew. I would have had a tough time without this group. No amount of technical information is as helpful as a bunch of weird, funny, intelligent people saying "been there done that." I am still badly fatigued, but I have other health issues that may or may not be hcv-related ( I am 50, and reasonably fit).
In my opinion and experience, the "lasting effects" of hcv will be worse than the lasting effects of tx. If you opt for tx, pay close attention to your side effects and make sure your doc also pays close attention. Talk with him/her AT LENGTH about drugs that might help you, should you need them - for dropping red or white blood cell counts, depression, anxiety, insomnia, pain, rashes. The rescue drugs matter and you don't want to have to reason with your doc about them after you are on tx.
Hope this helps Kathy
c'mon the rest of you clowns, fess up about your tx hangovers:-)
Barbara - 18 Aug 2006 21:00 GMT Thank you Kathy, it does help. Nothing beats hearing from someone who has been through it. And I'm very glad to hear that you are improving. Hope you continue to improve. Thanks so much for taking the time to think about my question and answering it. Barbara
> Hi Barbara. I have been thinking about your question for two days. I > ended my year of treatment six months ago. I relapsed at three months. [quoted text clipped - 35 lines] > > c'mon the rest of you clowns, fess up about your tx hangovers:-) Burke Gilman - 18 Aug 2006 21:11 GMT >snip< > > c'mon the rest of you clowns, fess up about your tx hangovers:-) Get out. I will not be having any Tx hangovers. In a few weeks, I'm just going to blow this nightmare like a bad dream. -bg
greyhackles - 18 Aug 2006 21:41 GMT >>snip< >> >> c'mon the rest of you clowns, fess up about your tx hangovers:-) > >Get out. I will not be having any Tx hangovers. In a few weeks, I'm >just going to blow this nightmare like a bad dream. -bg Short termers are like that ;-)
My progress since EOTx has been almost entirely without drama. My biggest on-therapy problem was severe anemia, but by the 3rd week I was off the Procrit for good and all my blood numbers were well on their way to their pre-tx state - save for the LFTs, which are now those of non-heppers :-)
My muscle tone was compromised in a major way by the end of the 48 week tour - most of the 40+ pounds I lost was clearly muscle tissue - but this has been coming back slowly but surely.
Like CJ, my fine motor skills were impacted during therapy, which really became apparent this spring when I started tying flyfishing "flies" again. I don't know if that was neurological or physiological - I suspect the latter - but that's clearing up as well.
The hair thing has gone full circle - I'm back to a full head of very curly hair again, after having it go dead straight and fragile as heck by the 6th month of tx. My post-tx eye exam went perfectly, so no impact there. And I had no mentionable on-therapy emotional or other psych issues, so no anti-D withdrawal problems.
The only apparent, lasting damage is the scar from shot #41 that left me with an injection site reaction, and scar tissue in the tight "corners" of all my finger joints. Between the Riba and the dead of a brutal New England winter, I had a major problem with skin dryness on my hands, in spite of a medicine chest of countermeasures. It hasn't taken much provocation to get the scars to crack open, but I *think* this is slowly getting better, I just can't swear to it yet.
All that said, I cannot answer the un-asked question...
Cheers
/greyhackles
Barbara - 18 Aug 2006 23:15 GMT Greyhackles, From reading your post, you've done well, and it appears you are continuing to improve. Thanks for your response and best wishes, Barbara
> >>snip< > >> [quoted text clipped - 38 lines] > > /greyhackles elmoemerson@webtv.net - 19 Aug 2006 15:45 GMT Re: Side effects of TX and lasting side effects Group: alt.support.hepatitis-c Date: Fri, Aug 18, 2006, 4:41pm (CDT+1) From: greyhackles@NOSPAMyahoo.com (greyhackles) On 18 Aug 2006 13:11:12 -0700, "Burke Gilman" <burkegilman@moxmail.net> wrote: kjoh wrote: snip< c'mon the rest of you clowns, fess up about your tx hangovers:-) Get out. I will not be having any Tx hangovers. In a few weeks, I'm just going to blow this nightmare like a bad dream. -bg Short termers are like that ;-) My progress since EOTx has been almost entirely without drama. My biggest on-therapy problem was severe anemia, but by the 3rd week I was off the Procrit for good and all my blood numbers were well on their way to their pre-tx state - save for the LFTs, which are now those of non-heppers :-) My muscle tone was compromised in a major way by the end of the 48 week tour - most of the 40+ pounds I lost was clearly muscle tissue - but this has been coming back slowly but surely. Like CJ, my fine motor skills were impacted during therapy, which really became apparent this spring when I started tying flyfishing "flies" again. I don't know if that was neurological or physiological - I suspect the latter - but that's clearing up as well. The hair thing has gone full circle - I'm back to a full head of very curly hair again, after having it go dead straight and fragile as heck by the 6th month of tx. My post-tx eye exam went perfectly, so no impact there. And I had no mentionable on-therapy emotional or other psych issues, so no anti-D withdrawal problems. The only apparent, lasting damage is the scar from shot #41 that left me with an injection site reaction, and scar tissue in the tight "corners" of all my finger joints. Between the Riba and the dead of a brutal New England winter, I had a major problem with skin dryness on my hands, in spite of a medicine chest of countermeasures. It hasn't taken much provocation to get the scars to crack open, but I *think* this is slowly getting better, I just can't swear to it yet. All that said, I cannot answer the un-asked question... Cheers /greyhackles ///////////// The only lasting side effect I've experienced is the compulsion to expose myself to big titted women in public places. Butt, with the hellp of local law enforcement officials, I'm beginning to get it under control. :-) elmo "I declare insanity, your Honor. I'm just crazy about that stuff!!"
http://community.webtv.net/elmoemerson/DocElmosHepFile
http://community.webtv.net/elmoemerson/TheFamilyAlbum
elmoemerson@webtv.net - 19 Aug 2006 15:39 GMT Re: Side effects of TX and lasting side effects Group: alt.support.hepatitis-c Date: Fri, Aug 18, 2006, 1:11pm (CDT-2) From: burkegilman@moxmail.net (Burke Gilman) kjoh wrote: snip< c'mon the rest of you clowns, fess up about your tx hangovers:-) Get out. I will not be having any Tx hangovers. In a few weeks, I'm just going to blow this nightmare like a bad dream. -bg /////// Atta boy, Burke! elmo
http://community.webtv.net/elmoemerson/DocElmosHepFile
http://community.webtv.net/elmoemerson/TheFamilyAlbum
Sourdo - 19 Aug 2006 05:29 GMT Well it's like this. Not all have problems, most do. Now for me, I just got to feeling like it was all one constant tequlia hangover 24/7. I knew it wasn't going to be fun, and it wasn't.
But it was battle and battle it was. I just slugged it through. Though it's unpleasant, I got by and day by day till it was done. You can do it too. Talk to your doctor about meds for side affects. Nausea, painfull headaches, sleep problems, whatever.
Good luck there. I know you can do it, a lot of people allready have.
 Signature Russ
http://www.tannersacre.com sourdo55 at yahoo.com
> Hi all, > Someone on another board posted all the side effects from the drugs given [quoted text clipped - 11 lines] > > -- Barbara - 19 Aug 2006 17:44 GMT Thanks Russ.
> Well it's like this. Not all have problems, most do. Now for me, I just got > to feeling like it was all one constant tequlia hangover 24/7. I knew it [quoted text clipped - 31 lines] > > > > --
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