Manual on Side Effects of Combination Therapy for HCV
I forget who provided this link before, but it is truly valuable. You have my thanks. It is a manual for Gastoenterology nurses, covering side effects, complications, and contraindications for the combination therapy that many of us are on or are considering. The download is free. You can also order a copy.
Link or http://www.projectsinknowledge.com/Init/G/1628/index.html
I am so sorry you are feeling so badly. It must really suck to be so close and find out you must continue. You had the strength to make it this far, so you must have the strength in you to go on a bit more. I am sure the extra time will go by really fast although it doesn't seem like it now. My prayers are with you...
How long are you going to go? I think sometimes these doctors wait until we get to week X and then tell us "By the way, you're going to do another X weeks." It is tough thinking you're near the end and then this gets sprung on you but it is for your own good.
Where are you at the damage leve and when did you clear?
Sorry to break into this post but I wanted to say that I am really loosing it and have been loosing it over the past couple of weeks now and this doesn't seem like me at all. I've been able to pretty much keep my chin up and take the treatment punches as they come along. My feelings and emotions are really getting the best of me. Seems as though I can't put everything in its place anymore. In these last stages of my treatment, I feel more devastated than ever.
I should be completing my treatment next week; at my 48 week point however it was announced to me last week that I need to do an extension of the meds. This has really thrown me for a loop and I'm not feeling well about this at all. Since I found out that I will continue on with the medications and not be able to stop at my 48 week goal, I can't get all of this out of my mind and put it in it's place. I want to be able to do just that 'say hey you...gotta do a few more weeks now...what the heck...you can do this...right? Yes, right you can'. I just want to leave this alone now for a while.
I've tried so very hard to be strong and get along with this treatment the very best I can. I would like to think that I've done a good job with striving towards and accomplishing my goal of taking the meds day after day, after day after day.
I feel so overwhelmed. I keep thinking and re-thinking how long its been since I've been on this medicine that's when I see it all flash right in front of me. I keep thinking about how powerful this treatment is to do and how it robs you of your life, body, mind and soul. I keep thinking that I should be done and have this over with....I just keep thinking, and thinking and thinking.
I now start to cry when I get ready for my day. I now cry during the day. I am now up at night pacing the floors and telling my husband that I'm just not sleepy. I now cry before I go to sleep. I now sit and daze out somewhere (really don't even know what I'm looking at). I cry and feel so badly for the new people who come on this forum and announce that they have hepC and have to treat. My mind is wandering with all sorts of things like why does this have to happen to people, why is this so painful to do these meds only when we are trying to heal ourselves. Is this really going to work. If I have to retreat will I be able to handle it again?
These last few weeks are consuming all my power and energy that I have left. I truly do understand why I need to do more than 48 weeks. I know that it is only for my benefit and may/can possible up my chances slightly to stay clear of this virus. I understand all of that. I just want this treatment to be over. I just want to have my life and myself back.
I'll be able to discuss things with my GI on the 16th. Discuss things like how much longer will I have to do the meds....period. Discuss what I tell you all on this forum and what we all discuss with each other....never. He will never begin to understand. He really wants to and is so compassionate towards me and his other patients.....but he will never begin to understand.
I feel so bad for you having to go through all this!! I just have no idea on this stage of the game...where you are at I mean! Its of course,,,easy for me to say,, Continue on but when I get to 48...I might not still have this happy go lucky...fresh idea because I'm in the beginning. What we need here is someone coming into this thread thats at the last weeks and having to go on!! This would help from someone...hands on experience! Again...I think about your struggle all the time to go another 12 weeks and you are definitely in my prayers!!
I feel so bad for you. I can only imagine how you must be feeling. At 10 weeks, I cannot let myself think about how much longer I will probably be doing this. How old will I be when I am done? Am I buying myself some quality time? Will I feel as good as I did 7 or so years ago when I am finally done?
I am trying to take it a day at a time; maybe an hour. There are times when I don't feel terrible, I try to grab onto those times for all I am worth.
dtr: several others have reported a feeling of being overwhelmed on being told they need to go on for X more weeks just as they were staggering to the finish line. The last stages of tx can be so difficult it seems important to adjust one's mental countdown timer in advance : if you're going to do extended tx make that decision early on so you can prepare for it. Unfortunately, Drs don't seem to be sensitive to this. This is a hard moment - once the news settles in you'll find the strength to keep on marching. It might also help to evaluate the extended tx decision yourself rather than simply take your Dr's recommendation as this involvement will make it easier to take on the commitment. There's little data, none conclusive, so it comes down to judgment. I spent a lot of time wondering about extended tx in the 30s and finally decided against it but have no real confidence that this was the "right" decision. All the best - it will get better.
twotells - I believe BobK posted that link. IMHO, the projectsinknowledge site is full of useful CME information and is a very good resource.
I am sorry you are going thru such a horrific time. I just came out of my phase about 1 week ago, to my surprise. I felt like you, and wondered if I would ever enjoy life again. I can only imagine how devestating it is to hear that your tx needs to be extended. Did your GI give you any indication during tx that this may happen? ( I had my appt. this morning, and that thought crossed my mind)......that thought froze me in my tracks. It is something that none of us would want to have to do..I am sorry you need to extend tx...just remember, YOU CAN DO THIS.......my GIPA was sharing positive and hopeful information about SVR rates.....and tx (and extented tx, etc)
I always stare out the window at nothing like you do ....but it can be very meditating and grounding.....
Downthisroad, I was really down and out for a couple of months, feeling pretty depressed, no energy...no amibition....and really feeling like there was no joy.......it finally did pass. Please let us know what you need to do next. Many hugs to you and your family.
Take a deep breath and relax for awhile. Good. Now think about what you would say to someone else in your situation and how you might provide them some encouragement. Think about the pros and cons of doing the extended tx. I know that finding out so late in the game is a real shock but just try to take a deep breath and think things through before making a decision.
Luckily for me, my doc has already planted the seed in my mind that I may do an additional 12 wks. I'm now on 21/48 or 21/60??
It's tough for me to imagine doing the extended time but, on the other hand, I want to give these meds the best chance I can of kicking this dragon's butt.
Good luck with your decision. We are here with you whenever you need us.
Does anyone know what would likely happen to an elderly person (75-80) w/ a chance of an alcoholic liver damage who gets exposed to Hep C ? 1 of my parents may have been exposed by me a couple of years ago b4 I was diagnosed, and it's been on my mind alot lately. Any advice welcome! Joni
While I don't know what would happen I can't imagine anyone that age going through treatment. I'd guess if they were tested and positive the best thing they could do is quit drinking, if they haven't already and forget about it?
I'm so sorry you're feeling so helpless. It sure does get rough at the end. I'm 42/48 and feel and look like someone threw me down and beat me with a bat. Makes it hard to stay tough. Just remember WE understand. I hope tomorrow brings a better day for you.
Hello everyone: I was Dx'd last summer w/ Type 3a and it has taken this long to start the treatment. I am getting my first pegintron injection via the Schering Redipen this Friday and I must say I have some anxiety about it! I looked in on this forum a few months ago and am glad that I found it. I imagine that I will be here quite regularly and want to share in the awesome support you all give to each other, it is truly uplifting to read all of the helpful/inspiring posts.
I have a viral load of over 4,000,000, and my fibrosis rating was 3 out of 4, with the other ratings all being 1's. My enzymes were sgpt 248 and sgot 100 last summer. A couple of weeks ago, they were much lower, one was within normal limits. I don't know why this is, maybe my liver inflames and recedes or something like that. Anyway, I'm a social worker and am worried about how this is going to affect my ability to work. I am considering informing my boss b/c I don't know how bad the sides are going to affect me until it happens, but I certainly don't want to lose my job b/c I'm in treatment.
I wanted to introduce myself and say that I intend to participate in a helpful manner. God bless all of us.
Try to not think too much about it. Focus on the end result. Keep on keeping on, theres is a cure coming 'round the bend soon I firmly believe. I take anti-depprecent called Remoron sol tabs. They not only keep on an even keel but also help with a good nights sleep w/o hangover effects. My heart goes out to you but I can't wait for to announce svr clear in a little while. Us newbies don't know much about all of the sx, but the ability to talk it out with people like you makes us more confident than ever. So if you look at the excellent service you are giving us by posting makes our "unknown" journey even easier. You are an excellent motivator and have helped no telling how many folks. Please know we love you and ALL the help you given everyone (newbies too). Love and Get well soon!
your friend ~Neal~
Lucky...welcome to the group!! The sides seem to effect everyone different and you might hold off saying anything to your work until you see how you are going to do. If you had some sick leave that you could take in beginning to see how you are going to react...that would help! Good Luck!
those last weeks can be real drudgery. and i only went 28 wks- i feel guilty complaining. i think i had it in my mind that it would be over and thats all the further i could think. its hard getting extra time tacked on. you folks doing 48 or longer are absolute heros. i went 4 weeks over my alloted time due to a few things and i felt like i was in nowhere land. i zoned out a lot and still do and thats ok. we sure do get thru this one day at a time. downthisroad you are having a special prayer said for you to endure.
Thank you, I think that is really good advice! I took off Monday, and don't have to be to work until 11:30 a.m. on Tuesday. So, from Friday at 4:00 p.m. on I guess I'll be seeing how this combo therapy is going to start out. Thanks for taking the time.
That will be perfect because you will be ready to go by then definitely. The first shot for me was the worst and I'm on #8 so if this is the very same case for you...don't get discouraged because alot of people say #1 is the worst. After that first 1...not bad at all. I guess its just a big adjustment for your body the first time and of course you may be reporting back that you felt nothing! I hope that is the case!
Your news sucks and it is depressing and you have a right to be unhappy about it and to rail against whatever gave this to you. My doctor told me that he hates telling people they have C. "Yeah, but I probably did this to myself" I told him. "I was around in the 60's. I know what went on. Why you and not 10 others?" he said.
There is no reason. I am not a Christian, so I don't have the consolations that offers people. I do believe that the only thing that does matter is how one treats his world and the people in it. I don't know about God, but there has to be some essential goodness in this world.
You have taken 11 months of what sometimes feels more like poison than medicine. You can do the rest if you have to. If you need to take some time to acclimate to the news, then take it. Don't confuse the side effects of treatment with legitimate feelings.
None of us deserve this, no matter how self destructive or how innocent in the contracting we might have been. Yet we have it. So **** it, the only thing to do is fight it. (I'm at 22/48 and the thought of not clearing scares me, but I don't know what else to do except try.)
Sorry for the invective. I used get angry when my daughter would tell me how this one girl was mean to her at school. "I'm not angry AT you, I'm angry on your behalf," I'd tell her. DownTheRoad, I'm angry on your behalf. Treat yourself well. You're one of the heros.
long time no post from me but i have been lurking around.
well to make a long story short after fighting for a month
and finaly threating to sue medco health finaly sent the riba.
they had sent the peg-intron 3 weeks ago.
so i'm trying to see the hep np at the university and start treatments on friday.
will be at least 48 weeks and dr. will let me know if we need to extend near the end.
going to be a long haul for me white cell count is 1.4 so will
be neutropienic fast, h&h are good but because of the leukeamia
my platlets are at 80 and havent started treatments yet.
but after fighting with medco health since december to get the meds at long last i can get started. will try and post again friday night and let ya'll know how its going.
Good luck. My sides (I am at 22/48) turned out to be relatively OK and I have been at work almost every day. The mental effects have been the worst for me--forgetful, mentally tire easily, not as sharp--but I am dealing with it as best I can. Here's hoping yours are bearable, too.
As far as telling people, I own the business so that is a little different, but my employees all know and are OK with it. I have had some wierd experiences in telling business clients that I am in tx, so my advice is to be circumspect at work and open with your family and friends. Every situation is different, of course, so make your own decision.
Hang in there, visit us a lot, and remember that rage is a recognized side effect so when we give in to it on the board, just stand back and try not to let any spatter on you. It's going to be a ride, but at least you're not alone.
Hey, thanks for the great welcome! I have a question already. I am Rx'd 3 Ribavirin 200 mg. in the a.m. and 4 of them in the p.m. That's 1400 mg. Seems that others on this board are taking a lot less and have problems w/ sides. What do you think about 1400 mg./day???
Well I can see the shot thing doesn't get better with time if you are on 40. LOL I hate the shot! I take my shot on sunday night and its a very big production getting ready for it and psyching myself to take it!! I feel stupid as so many people here just take it! I feel so much like a baby but would do anything to get out of that shot in the stomach no less!! haha but once you get it in...I love it "Take that"!!!
I am soooooo glad that I am not the only one that does that....by the time I did my shot tonight, I was drenched in sweat, and my thin and thinning hair was matted to my head...I had to change my T shirt....what a baby I am.....and what a sight to see!!! ahhahahaha....I will be thinking of you on Sundays.....you go girl..........grab it, stab it...and deep six that darn dragon!!!!!
Lucky: Welcome to the community!
All: Well, I am about to do my 40/48 shot!!!!!!!! (My palms are getting all sweaty already) I do not think I will ever get used to the psychological apprehension of "the shot"...(the "plunge" is my hang-up) and really, it is not all that bad. So, I wonder why I have to count to 3 about 20 times.....before I can do the "hit". I am really looking forward to "scratching" off another shot date on my "countdown" list.........Take THAT, you "bleeping" dragon!
Showboat/ Hi I hope you are ot thee right now cause I really need to talk. I am hoping that you are around and see this. I am going through STUFF right now that is kinda scaring me. I am never dpressed....of course ad's help there...but up til now I have felt pretty confident..So much of what I have read lately has been scary too....I haven't read any posts today...so I am really sorry if this post is selfish....kim
1400 Riba seems high. The dosage is by body weight and there have been people who dropped from 1200 to 1000 as their weight dropped (and sx kicked in). I'd check again with your dr to make sure, that's the only one who can really say.
Same thing happened to me. On week 44 my Doc told me to do 50. Man I almost died. I was feeling pretty bad by that time, and my BC's were very low. I had a hard time walking let alone work. But I did it, only because I wanted to do all I could to beat this. Is it hard, yes, but we started something that we knew was going to be hard from the beginning. Hang in there, you are not alone.
Yikes! I don't know what I would have done if I had been in your situation at the end of treatment! I think I would feel just as overwhelmed as you. The end of my 48 weeks were the worst for me and I counted down every last second until it was over - so I feel for you. I can't imagine that your Dr. would want to extend your treatment too much longer? I know you can do it - you said you have been so strong throughout treatment - and you are! In the grand scheme of things, this is only short-term pain that you have to go through to achieve your goal. When I first came on this site about a year and a half ago, someone kept writing "keep your eye on the prize!" and I loved that - and did. Hang in there. You're almost at the finish line! Just hang in there - it will be over soon and you will feel like yourself, again. I hope you are back to yourself soon.
You have to do what you HAVE to do.....listening to you put these words down in text...I wonder if you are HERE...standing here BESIDE me ....cause you can eloquently verbalise feelings that have been haunting to me lately, feelings that I have not been able to put in words...at least to the point that anyone here (with me) understands......THAT makes me feel useless. BUT we HAVE fought this hard and long....there has been tooo much invested here....everthing that we ARE and we HAVE.... to be exact. You CAN"T give up...for NO reason.....do NOT deprive yourself of any chance you have to DANCE around the fire... while we roast DRAGON WEENIES and marshmallows (mmmmm smores)and Tell DRAGON TALES.... We CAN do this...and I will be here as well many others, you are also very fortunate to have a husband who can empathize with you...or at least listen to your ravings....LOL.... I will be fighting along beside you. Kim
Hey...I have spent the last couple hours trying to catch up on the last few days of threads...either I am a really slowwww reader or there is some remarkabkle brain fog problems going on here..hahahaha. Anyway, I just wanna say...it gave me some time to calm down...cry ..and smile...and eventually laugh....this is why I come here. I am sorry if my first post to you sounded like I was ready tolock myself in the bathroom with a rope, some pills (anything butttt riba), a razor,,,some electrical objects and a tub full of water....LOL..I am better now.....I had my first serious bout of riba rage today...and I let it out on my spouse and daughter. I felt like sh##. And the worse part of it is I wasn't mad at them...I was mad at myself..(and I feeling sorry for myself I might add) ..and I took it out on them...All xcause no-one woke me up to make dinner cause I have been sleeping all the dam# time, I felt totally useless...and well I don't need to go on. You don't have to send rev's straight jacket to me....reading the last 2 days of post have put things back in perspective.....thanks, kim
<a href="http://www.projectsinknowledge.com/index.html">Projects In Knowledge</a>
is a great website. They also have a mailing list -- I just received a study on fibrosis this morning from them. You can download a copy (or read it in html by going here >> <a href="http://www.projectsinknowledge.com/Init/G/1664/index.html">Monitoring of Hepatitis C Progression:
Assessment of Fibrosis Using Liver Biopsy
and Noninvasive Markers</a>
Downthisroad, hang in there as best you can. My last 2 months of tx the last time were the worst for me and I probaly would have made my doc match me shot foe shot and pill for pill if he'd told me I had to keep going.
Lucky Welcome aboard!
berlynn As one Kim to another, I'm sorry things are hitting you this week the way they are. As for the Riba Rage well... as Bones on star trek would say "Damnit Jim, I'm a doctor, not Oprah" It's very hard to keep our cool when the meds work on us the way they do, we especially don't want to hurt our families and when/if we do we feel like dirt! The sides do fluctuate and let's hope that things get better. You may need ADs adjusted if things get out of hand! Hang tough, we're rooting for ya'.
Lots of people know that I am on maintenance therapy (this is week 62 out of _________). I did 50 weeks of regular, full-strength treatment (meaning 1000mg of riba per day and 180mcg of Pegasys per week) then went right to 90mcg of Pegasys. I did it for two reasons:
1. I was scared to death of stopping treatment completely. I remember nearing the end of treatment and getting pretty freaked out.
Treatment, to me (even though it is rough etc.), meant I was clear of the virus and no more damage was destroying my liver (I am Stage 3). So, odd as it sounds, it was a comforting place.
2. I want to reverse the fibrosis if I can. I want to go back to Stage 2 or 1 or 0 (like BobK did).
Last time I saw my doctor he told me I could be on this treatment for years.
What is funny is during treatment the doctor and his trusty assistant said I could stop at 48 -- they almost insisted (because treatment has made me crazy -- a real whack job -- and I refused ADs and took solace in a bottle of Xanax). After researching this damned disease and mulling over things (how long does progression for Stage 3 to 4 take - would an extension hold back that - would doing 72 weeks prevent me from developing HCC - lots of junk - emailing Dr. Ben Cecil and other doctors) I decided in my mind I would push for extended treatment. Okay, then I made a frantic call to my nurse and asked for MORE Pegasys. When I saw the doctor he acted like that is what he intended all along -- to keep going. He laughed and said Nurse Booze Bottle (name changed to protect the innocent) is a hard taskmaster, and he (the doc) would have given me 2 weeks off during the holidays. Ha, like 2 weeks off of this **** -- I mean life saving medicine -- is going to make anyone feel like their old self. Right.
Goodmorning all...I just got a call from my doc about 5 min ago and the biopsy came back negative for skin cancer Whewwww!!!!! I feel better allready. Sorry if I sounded like a nut case last night...mostly I have been positive through this ....but lately it has been alot harder. One day at a time...I WILL DO WHATEVER IT TAKES!!!!!!!The nurse said that it was some kind of leisons,,,she didn't think that it had anything to do woth tx.....she is from my primary docs office...so she doesn't really know. I KNOW that these places are from the tx cause I have only been itching since tx. I also set up an app to follow up in a couple of weeks cause if I keep feeling the way I have the last few days I will seriously consider uping my ad's. I'm hanging in there.kim
Has anyone tried a hoola hoop lately...my mom got some for my grandkids...I tried to do it...I used to be able to..what a laugh....hips going in all directions....hopefully my grandkids weren't traumatised by watching me try....LOL
rev..thanks for the reminder of what you have been through...and thanks for all the info you share with us. So what if we are wacked...we desrve to be with all the shi# we deal with on tx. you take care, kim
I found this article about Liverite, I know some folks are on it. I also found that sea silver or any kind of supplement with silver in it isnt safe, silver is toxic to the liver. And coral calcium isnt any better than regular old calcium, that it is of no use to the human, when to you see humans grazing on coral? I cant remember where I read it, but it made sense to me. I am embarrassed to say I bought a bottle of it and gave it to my husband 6 months to a year ago. He lived thru it thank goodness, but I wouldnt buy anymore. My mother-in-law is a big sucker for those "new alternative therapy" stuff out there.
Here are some other sites that help you weigh the pros and cons:
Liverite marketers ordered to stop improper claims. Liverite, Inc., of Tustin, California, Corinne and Steven Jacobson, and James and Sheri Grant, have agreed to settle FTC charges that they made unsubstantiated claims in Internet, radio, and print ads that their herbal products were effective against liver diseases, hangovers, and many other health problems. Under the agreement, the Jacobsons and the company will pay $60,000 in redress, and all of the defendants will be prohibited from claiming making unsubstantiated claims that any product cures or prevents any disease or disorder. The FTC's complaint indicated that Liverite's Web pages used metatags so that people searching for information about AIDS, hepatitis A, B & C, liver problems, liver disease, liver detoxification, alcohol, hangover, cirrhosis, anabolic steroids, interferon, and hepatotoxicity would be more likely to go to defendants' sites. [Marketer of dietary supplement purporting to treat liver diseases agrees to settle FTC charges: Must have adequate scientific evidence in the future. FTC news release, Aug 21, 2001]
Hey, Girlfriend....I am so sorry I was not here for you. (I am now) I just logged on....had to spend time with hubby this morning.
One thing that is hard to remember for some of us on tx about that darn Riba Rage.......is: "this too shall pass"....the guilt factor can be the most dreadful, because we hate to hurt the ones we love. My hubby was on tx a few years ago, so he can relate, BUT, we still have "stand-offs". I can spend a whole day hating myself, and feeling like an "Ogre" and the worst person in the world.....keep your family informed of the sx....(I always warn my hub, and even tho it is hard to admit that I am feeling "less than"...I lay it all out on the table before anything happens. I feel so unattractive now...(I do not even make an effort to change out of my pj's, no makeup, hair looks like the current "internet forward of the persian cat with the "bad hair day"..do not know if you know the one....I started feeling mentally better when I started to not fight any of my feelings....I felt like I had to hide my "womanly imperfections" from my man....(I was hiding from myself) One day I just had him take pictures of the back of my head.......those darn bald spots...instead of hiding them anymore....well...I only wanted one picture...and he kept saying "let me do one more" hahaha..I think he finally got that the hair loss factor DOES trigger a lot of lost self-esteem for me....I know I am rambling...sorry, just one more thing....I have no children but many nieces and nephews....of course, I have the one favorite that just adores me....(I am lucky) she is going to be 13 in April...she spends some weekends with me and brings one or two friends....we have a blast shopping, cooking, baking, dancing, singing, going to nice "big girl" restaurants, ghost stories....you know, wonderful and fun girl stuff....well I have been so sick in the last few months (getting better every day, now and feeling new zest for life) I had to cancel our last "girl time"...well, she cried and cried and I felt so guilty........I felt like the meanest bad Auntie in the entire Universee....well, she did get over it like kids do......and today is a new day. I have learned to put myself first...not easy for me....I had to learn to "respect" my health issues and lack of "everything" and make that my priority. I always know that my chaotic moments will bring with it more peace of mind...down the road.
I am here for you....................I am so sorry I did not see your post, but am so glad that you feel better...........Everyday is a new experience, and we never know when our sx's will turn our world upside down........we hopefully remember that each moment is a new beginning. I hope I am not sounding weird....I am having a weird day too. This is the first day I feel REAL ENERGY, and I feel "all over the place"....but I think that it is good, because at least I am not laying on the couch.....maybe I can clean house for 5 minutes...hahaha I am not going to overdo it....PEACE
Let me know if you would like to email each other.
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