Aa
48 weeks coming to an end of Friday the 13th
I started my Triple incivek Treatment Friday May 13th 2011 I will take my last Riba pill Friday April 13, 2012. Hmmm....
Since I found out that I had HCV it became somewhat of an obsession with me, studying it, thinking about it, worrying about it, etc. I needed to try and take the opportunity to get rid of it.
My 4week vl was questionable und or not, so I ended up doing 48 weeks. I became und somewhere between week 4 and 12. What a bunch of huey! Those stupid VL tests have caused more anguish for many than the sx themselves!
I wish that I could say that treatment was easier than it was for me. I think I had most of the negative treatment sx for most of my treatment. One thing after another it seemed. One thing that was never in danger for me was my WBC or ANC, so in that regard I have been lucky. I suffered from severe anemia and have been on procrit since week 5.
In the same circumstances knowing what I know now, If I had the chance to do it again I would because I was stage 2, (I feel like that was questionable could have been a stage 3) over 50, no other major health problems, had a chance to be in an excellent dosing study with the incivek. ($$saved) . I still spent a lot on all kinds helper drugs even with insurance. I am a CT allele which really needs the DAA for extra lift in SVR chances, Only working part time for myself as a caregiver to seniors. (go figure).
Now, On the other hand, Right now, I feel like this treatment has about ruined me physically and mentally. At the end of treatment, I feel like an elderly woman, look like one, act like one. Not that there is anything wrong with that but for a 53 year old I feel like Ive lost 20 years. Ive lost 20 lbs. lost half my hair,I can't hardly carry on a conversation(repeat my self over and over), cant think clearly, drive a car barely, I have spurts of motivation but not long lasting. I am obsessive. ocd about bad food, dirt, trying to get some order in my life. I have grossed myself out so many times on treatment that I cant imagine. Even though I have a husband and two teenagers I did not have a great support system. I feel like not being properly cared for when I needed it the most really exasperated the treatment difficulties. Hopefully I will be able to get past that resentment.
I have had bi-polar type episodes that make me go from very angry(rant), too happy, so sad (crying all the time). full of guilt, embarrassment, hatred, needy, I loose my temper around my family at the drop of a hat. I wonder if I will ever be normal again, OMG! What the hell is in this stuff that screws with the human body so severely!!!!
I feel rode hard and hung up wet!
I cant advise anyone to do this or not to do this but I would really think it thru and look at all the options so carefully. Once you get started, stopping is just not a option unless a life threatening situation arises. Or you are not responding to treatment. This is a HUGE commitment. You have to be completely dedicated to this. This can be very tough for many. Adhearing to the dosing regimen can be difficult. You better get ready for a fight! A real battle! These meds are mega powerful! Have an array of sx from mild to severe. Like I said, Some of them can be life threatening. I just hope the researchers come out with something much better for treatment soon. . I really had no idea what I was getting into.
I will have my 48 week VL test Friday April 13th. I think I actually get to stop the Riba Thursday evening. All left over meds will be returned. . And Now as of this coming Friday I will play the SVR waiting game. That is also a bunch of Huey. I will be sooooo relieved when this is over. I will then head off to my other docs that I have ignored and get caught up. Getting my teeth cleaned is first on the agenda. If Im going to walking around with a huge smile on my face I want the ole choppers lookin good!
The only other thing I can say is, I wish everyone who decides to do the current treatment options available, all the best and mostly achieve SVR! I appreciate all the support I have gotten here. I dont think I would have gotten thru treatment with out it. I know there are worse diseases with even more severe treatments in our world. HCV Treatment is no walk in the park. But its not the hardest. Even though it doesnt seem like it while your doing it. I started cleaning out my med drawer. Wow, Im looking forward to actually putting something in there like stationary or fuzzy socks.
Since I found out that I had HCV it became somewhat of an obsession with me, studying it, thinking about it, worrying about it, etc. I needed to try and take the opportunity to get rid of it.
My 4week vl was questionable und or not, so I ended up doing 48 weeks. I became und somewhere between week 4 and 12. What a bunch of huey! Those stupid VL tests have caused more anguish for many than the sx themselves!
I wish that I could say that treatment was easier than it was for me. I think I had most of the negative treatment sx for most of my treatment. One thing after another it seemed. One thing that was never in danger for me was my WBC or ANC, so in that regard I have been lucky. I suffered from severe anemia and have been on procrit since week 5.
In the same circumstances knowing what I know now, If I had the chance to do it again I would because I was stage 2, (I feel like that was questionable could have been a stage 3) over 50, no other major health problems, had a chance to be in an excellent dosing study with the incivek. ($$saved) . I still spent a lot on all kinds helper drugs even with insurance. I am a CT allele which really needs the DAA for extra lift in SVR chances, Only working part time for myself as a caregiver to seniors. (go figure).
Now, On the other hand, Right now, I feel like this treatment has about ruined me physically and mentally. At the end of treatment, I feel like an elderly woman, look like one, act like one. Not that there is anything wrong with that but for a 53 year old I feel like Ive lost 20 years. Ive lost 20 lbs. lost half my hair,I can't hardly carry on a conversation(repeat my self over and over), cant think clearly, drive a car barely, I have spurts of motivation but not long lasting. I am obsessive. ocd about bad food, dirt, trying to get some order in my life. I have grossed myself out so many times on treatment that I cant imagine. Even though I have a husband and two teenagers I did not have a great support system. I feel like not being properly cared for when I needed it the most really exasperated the treatment difficulties. Hopefully I will be able to get past that resentment.
I have had bi-polar type episodes that make me go from very angry(rant), too happy, so sad (crying all the time). full of guilt, embarrassment, hatred, needy, I loose my temper around my family at the drop of a hat. I wonder if I will ever be normal again, OMG! What the hell is in this stuff that screws with the human body so severely!!!!
I feel rode hard and hung up wet!
I cant advise anyone to do this or not to do this but I would really think it thru and look at all the options so carefully. Once you get started, stopping is just not a option unless a life threatening situation arises. Or you are not responding to treatment. This is a HUGE commitment. You have to be completely dedicated to this. This can be very tough for many. Adhearing to the dosing regimen can be difficult. You better get ready for a fight! A real battle! These meds are mega powerful! Have an array of sx from mild to severe. Like I said, Some of them can be life threatening. I just hope the researchers come out with something much better for treatment soon. . I really had no idea what I was getting into.
I will have my 48 week VL test Friday April 13th. I think I actually get to stop the Riba Thursday evening. All left over meds will be returned. . And Now as of this coming Friday I will play the SVR waiting game. That is also a bunch of Huey. I will be sooooo relieved when this is over. I will then head off to my other docs that I have ignored and get caught up. Getting my teeth cleaned is first on the agenda. If Im going to walking around with a huge smile on my face I want the ole choppers lookin good!
The only other thing I can say is, I wish everyone who decides to do the current treatment options available, all the best and mostly achieve SVR! I appreciate all the support I have gotten here. I dont think I would have gotten thru treatment with out it. I know there are worse diseases with even more severe treatments in our world. HCV Treatment is no walk in the park. But its not the hardest. Even though it doesnt seem like it while your doing it. I started cleaning out my med drawer. Wow, Im looking forward to actually putting something in there like stationary or fuzzy socks.
Best Answer
Congrats on making all the way. I know it's been a long tough road for you and remember when you had adjust to hearing about extending tx to 48 weeks with that questionable 4 week und. This will soon be behind you and hopefull HCV, too. Hope life begins to return to normal very soon. Better days ahead. Good luck to you.
Better late than not at all. I thank pooh for giving me a link to your post, as I have not been on lately. Lydia, that was a wonderfully well written and informative post. Thank you for all the expressions and emotions you have shared. I can really relate to the "grossing myself out" one - as I do that too. ( The Victrelis makes me belch and I thought I was keeping that at home, but I am beginning to wonder if it has carried to the office).
How is the jet lag -- not having to take all the dreaded meds so often. I hope you have had a stock of procrit and can continue that after tx. (My first tx my hemotologist told me to contine it until it was gone) I hope you get the VL results soon and do keep us posted about the "reentry" and how you feel. Like working dog said, it has been a pleasure (if that is how I can put it) treating with you.
bean
How is the jet lag -- not having to take all the dreaded meds so often. I hope you have had a stock of procrit and can continue that after tx. (My first tx my hemotologist told me to contine it until it was gone) I hope you get the VL results soon and do keep us posted about the "reentry" and how you feel. Like working dog said, it has been a pleasure (if that is how I can put it) treating with you.
bean
Hi Lydia: Thanks for sharing your feelings from the heart. I completed triple therapy this week (Incivek) and can certainly relate to much of what you wrote. You fought the hard fight. Most importantly, you were still standing when the battle was over. :-) Cheers, GB
Thank you everyone for reading and responding, It made me quite tearful. I love and cherish them all. Some of us have been together treating about the same time and have had some good laughs about our situations as we nod our heads in agreement while reading posts. Others ,the veterans when I came here, taught me almost everything I know about HCV. ( I was very ignorant) As the newer diagnosed come aboard, those of us doing triple therapy have probably scared the bajeebies out of many, and at the same time said yeah, it was bad but were still here and SVR! it was worth it! We're here for you when you need us!
This is to The best, funny, knowledgeable, controversial, sympathetic, caring, Witty (should I keep going?) folks in cyberspace . CHEERS!
Lydia
This is to The best, funny, knowledgeable, controversial, sympathetic, caring, Witty (should I keep going?) folks in cyberspace . CHEERS!
Lydia
Congrats on finishing your 48 week treatment and for sharing your experiences. You really hit it on the nail when you said, `This is a HUGE commitment. You have to be completely dedicated to this. ` Sooo very true!
Hope you treat yourself with a nice trip or mini holiday to celebrate such wonderful news!!
I cannot wait to get to the dentist for a cleaning too! lol
God bless, Anita
Hope you treat yourself with a nice trip or mini holiday to celebrate such wonderful news!!
I cannot wait to get to the dentist for a cleaning too! lol
God bless, Anita
Congratulations! You have done a very good job 48 weeks is difficult and adding the new DAA's makes it that much harder
You will feel better. At 3 weeks post tx I was UND and starting to feel better, then I had a close family member hospitalized and that set me back a bit. I am now almost 8 week post tx and having more good days than bad
I wish you the very best, may we all SVR
Dee
You will feel better. At 3 weeks post tx I was UND and starting to feel better, then I had a close family member hospitalized and that set me back a bit. I am now almost 8 week post tx and having more good days than bad
I wish you the very best, may we all SVR
Dee
lydia, congrats on finishing on friday the 13th. i'm hoping you'll start to feel much better and reach SVR. good luck with your future. belle
Congratulations ob coming so far. Tx is tough but hopefully we will soon return to normal and we are hep c free
I started tx on a Friday the 13th....HA. Either way a bad day for HCV.
Congrats to being done.
Congrats to being done.
I am glad that you are almost done! Congrats on the 47.6 weeks!
I understand what you mean about looking like an old woman and feeling like one too. You are right- the meds are some bad dudes and by the end of the process that is how you feel. However, in all likelihood you probably don't have hep c anymore. The strange thing about the tx is that all of the effects sort of sneak up on you-one minute you have one or two symptoms and then you don't have those but you have two or three more and it just goes on and on and the physical toll is great but gradual enough so some people who don't know what is going on with you don't even realize how ill you are.
When you are finished with tx you look in the mirror and wonder when you started to look like that. But soon your energy returns and the fog lifts. Then about 8-12 weeks after the tx you look in the mirror and see your old self and you look great! Your hair is thinner but you can make it look just fine most of the time with a few handy dandy hair products. By then you are feeling pretty darn awesome. That is how it was with me. And BTW you may feel ruined but probably you are not. I felt that way at the end of tx and am now 5 mos post tx. I had a lot of emotional issues too during tx but am fine now. I agree with you about waiting for those viral load tests and really believe they should test people at 3 mos after tx just for some reassurance that they are still ok. They should still test at six months for the final but six months is too long-some of the minor stuff continues and it makes you wonder. ( I still get rashes so I was tested at 3 mos and still UND). People who have done this tx deserve to know where they are to help keep the worries at bay. Thanks for your honest post. Enjoy every last one of those Ribas over the next few days! I will be thinking of you on April 13th! Congrats again and I look forward to your SVR.
G
I understand what you mean about looking like an old woman and feeling like one too. You are right- the meds are some bad dudes and by the end of the process that is how you feel. However, in all likelihood you probably don't have hep c anymore. The strange thing about the tx is that all of the effects sort of sneak up on you-one minute you have one or two symptoms and then you don't have those but you have two or three more and it just goes on and on and the physical toll is great but gradual enough so some people who don't know what is going on with you don't even realize how ill you are.
When you are finished with tx you look in the mirror and wonder when you started to look like that. But soon your energy returns and the fog lifts. Then about 8-12 weeks after the tx you look in the mirror and see your old self and you look great! Your hair is thinner but you can make it look just fine most of the time with a few handy dandy hair products. By then you are feeling pretty darn awesome. That is how it was with me. And BTW you may feel ruined but probably you are not. I felt that way at the end of tx and am now 5 mos post tx. I had a lot of emotional issues too during tx but am fine now. I agree with you about waiting for those viral load tests and really believe they should test people at 3 mos after tx just for some reassurance that they are still ok. They should still test at six months for the final but six months is too long-some of the minor stuff continues and it makes you wonder. ( I still get rashes so I was tested at 3 mos and still UND). People who have done this tx deserve to know where they are to help keep the worries at bay. Thanks for your honest post. Enjoy every last one of those Ribas over the next few days! I will be thinking of you on April 13th! Congrats again and I look forward to your SVR.
G
Congratulations on finishing up this very difficult treatement regimen. I know it was difficult and I know you had problems. Here's hoping that you recover rapidly and attain SVR in a few months. Best of luck to you.
Hi Lydia.. Congrats to you on finally finishing this up !. Wishing you a speedy recovery and look forward to hearing about your overall success..
Will
Will
Lydia.... have really enjoyed you being on the forum during my tx....you did it! got through the 48..wow! i think it will take time to get back to normal...i'll bet in 6 weeks you feel way better...i'm 5 months post now and still achy and still hgb a little low...but i'm doing great.....i hope you don't get too excited and then let down post tx because it takes a while...you may even have a couple different symptoms in the weeks following tx....the brain fog thing is one that takes time...but your a youngest and have so much time ahead...keep us posted..say hi to iggy for me.....billy
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