Aa
Treatment
Hi
I treated about three years ago with pegasys/and copegus. I stopped treatment after 19 weeks due to an infection in the eye which frightened me, and also emotional problems encountered at work because I stupidly refused to take antidepressants (I literally went off at work).
I want to get well, though, and get on with my life. So, I am considering trying Pegintron/Riba this time (which I hear is much more difficult than pegasys). I need advice.
Does it make sense to try again with a harsher treatment or am I only fooling myself. I can't live like this anymore. I am so lonely. My last "friend" left when I stopped treatment. If I am approached by potential mates, I always find some excuse as to why there can be no relationship as opposed to telling of my infection. I feel so guilty sometimes thinking to myself "if you only knew the real reason I don't want to go out with you."
I am 51, female, 1a, and last bio showed stage 1, grade 4. The treatment was working, by-the-way.
Alone and very lonely
I treated about three years ago with pegasys/and copegus. I stopped treatment after 19 weeks due to an infection in the eye which frightened me, and also emotional problems encountered at work because I stupidly refused to take antidepressants (I literally went off at work).
I want to get well, though, and get on with my life. So, I am considering trying Pegintron/Riba this time (which I hear is much more difficult than pegasys). I need advice.
Does it make sense to try again with a harsher treatment or am I only fooling myself. I can't live like this anymore. I am so lonely. My last "friend" left when I stopped treatment. If I am approached by potential mates, I always find some excuse as to why there can be no relationship as opposed to telling of my infection. I feel so guilty sometimes thinking to myself "if you only knew the real reason I don't want to go out with you."
I am 51, female, 1a, and last bio showed stage 1, grade 4. The treatment was working, by-the-way.
Alone and very lonely
I completely agree with Jim's last post...maybe just meet people and see how it goes, sometimes when we lower our expectations, things can happen on their own, cause the situation isn't charged so much with our own expectations, etc...
Perhaps get a fibroscan or some type of present diagnosis on your current liver condition, and see if you can wait for the more enlarged trials, or one coming sooner...course these are all your decisions, we're just giving you our takes based on the little info you gave us...whatever you decide to do, I wish you the best of luck...and remember, many have told people they were involved with, and these people decided to stay, probably has a lot of do with the charecter of the person, and level of commitment...
Perhaps get a fibroscan or some type of present diagnosis on your current liver condition, and see if you can wait for the more enlarged trials, or one coming sooner...course these are all your decisions, we're just giving you our takes based on the little info you gave us...whatever you decide to do, I wish you the best of luck...and remember, many have told people they were involved with, and these people decided to stay, probably has a lot of do with the charecter of the person, and level of commitment...
I'll admit having Hep C, certainly isn't a relationship "plus", but a number of our members were in similar circumstances to yourself and were able to form or keep a relationship. Keep in mind, while sexual transmission is possible, it's uncommon, and even less common from woman to man, and even less, common if you use a condom. Put it all together, and there probably isn't any real risk. But of course I can understand why you'd just want to put the whole issue aside and just treat. The newer treatmesnt protocols (like VX-950)are shorter (24 week maximum) so that much help some with your eye issue and many believe that within 3-10 years treatments may be offered without interferon at all. I'm sure you'll make the decision best for you but in the meanwhile, try and get out there and meet people. You just may be surprised that every man isn't like your ex-partner.
-- Jim
-- Jim
My last bio was in June 2005. I understand it is recommended to take one every three years. The next one is scheduled for June 2008. Also, if I am to use Pegasys again, it means stopping treatment the first time was a waste.
The eye problem is my biggest concern. I have seen an opthomalogist since using the Pegasys, and found out that I no longer have 20/20 vision and now require glasses.
The social problem is secondary, but still a problem. (No man is an island) Remember, I disclosed my illness before, and my partner eventually left. Most people who have informed partners probably were involved before finding out they were infected. Its not so easy as a single person.
I know I have to make a decision. However, if I do wait, I can see it's going to be a lonely trip not because of my attitude, but reality. Not many people will want to risk their health for the sake of a relationship.
Thanks
The eye problem is my biggest concern. I have seen an opthomalogist since using the Pegasys, and found out that I no longer have 20/20 vision and now require glasses.
The social problem is secondary, but still a problem. (No man is an island) Remember, I disclosed my illness before, and my partner eventually left. Most people who have informed partners probably were involved before finding out they were infected. Its not so easy as a single person.
I know I have to make a decision. However, if I do wait, I can see it's going to be a lonely trip not because of my attitude, but reality. Not many people will want to risk their health for the sake of a relationship.
Thanks
To put it another way, first get a biopsy or some other indication (Fibroscan, blood marker tests)of how much liver damage you have. Then get a good medical evaluation of your eye problem and how treatment with the current drugs might effect your eyes, including if it would make any difference which Peg you used. Best people to see on this would be: (1)a liver specialist (hepatologist) -- they treat more people so are more familiar with side effects -- and (2) A good opthamologist with some familiarity of Hep C treatment.
Once you know the above, then you can make the decision to treat or not with more complete information. If you do decide to treat, definitely look into the VX-950 (telaprevir) trials as one possiblity. If you decide to wait, make sure you're hooked up with a good hepatologist who can appropriately monitor your liver.
-- Jim
Once you know the above, then you can make the decision to treat or not with more complete information. If you do decide to treat, definitely look into the VX-950 (telaprevir) trials as one possiblity. If you decide to wait, make sure you're hooked up with a good hepatologist who can appropriately monitor your liver.
-- Jim
Of course none of us are doctors here, but that said it's unclear that the eye infection would repeat itself on re-treatment, and even more unclear if it would make a difference (in terms of the eye infection) if you switched from Pegasys to Peg Intron. In other words, you might or might not get it regardless of the Peg. This is an issue to discuss with a good liver specialist and probably an opthamologist, although it may be hard to find an opthamologist familiar with Hep C treatment.
My main point was that the Pegasys apparently got your viral load down the first time, so it would probably do the same thing the second time. But again, I'm not telling you to treat, in fact getting a biopsy and then waiting for better treatments would be my personal choice, assuming of course your liver damage hasn't significantly progressed. But that's me. Hopefully, you will be able to change your attitude about having Hep C and socializing, but if you can't, and Hep C totally takes over your life, then treating now may make more sense -- assuming of course that your liver specialist and opthomologist give you a green light.
All the best,
-- Jim
My main point was that the Pegasys apparently got your viral load down the first time, so it would probably do the same thing the second time. But again, I'm not telling you to treat, in fact getting a biopsy and then waiting for better treatments would be my personal choice, assuming of course your liver damage hasn't significantly progressed. But that's me. Hopefully, you will be able to change your attitude about having Hep C and socializing, but if you can't, and Hep C totally takes over your life, then treating now may make more sense -- assuming of course that your liver specialist and opthomologist give you a green light.
All the best,
-- Jim
Thank you for your response to my thread. I find your recommendations helpful. However, do you really feel I should try the Pegasys again considering the medical problems I had.
Antidepressants may help the emotional part, but remember I had the eye infection from the Pegasys. My vision has deteriorated some since too.
Antidepressants may help the emotional part, but remember I had the eye infection from the Pegasys. My vision has deteriorated some since too.
People are different and react differently to the meds. I've used both Pegasys and PegIntron. Both were effective in getting the viral level to zero - I responded to both. When I compare (this is just me) the way the two make me feel the term I like to use is that I have found Pegasys to be 'less rude' than Pegintron. Since the major objective is getting rid of the virus and you have established 'success' in repsonding already, might consider with going who brung you to the dance.
As for relationships. HCV is no more of a reason to avoid a relationship than having diabetes. There may be some conversations to have later, but there's no reason that hcv shouuld banish you to or from the island. I've been married for 20 years (hcv for more than 30) and my wife and kids are fine. They dislike me for other reasons.
As for relationships. HCV is no more of a reason to avoid a relationship than having diabetes. There may be some conversations to have later, but there's no reason that hcv shouuld banish you to or from the island. I've been married for 20 years (hcv for more than 30) and my wife and kids are fine. They dislike me for other reasons.
Thanks for dropping by and welcome to the forum!
Two issues really, but of course related.
Medically, if Pegasys worked last time -- and by "worked" I mean bringing your viral load down to zero within 12 weeks -- then I'd go again with Pegasys a second time, since it should work again as opposed to trying a different interferon.
That said, given the fact you were only a stage 1 at the last biopsy, you might consider getting another biopsy or alternatively getting a Fibroscan to access your liver damage. Fibroscan is available in several trial centers in the country and selectively offered to some patients here by an MD under the screen name "hepatitisresearcher."
If it does turn out you still have little or no liver damage, a very reasonable decision would be to wait at least for the trial results of VX-950 (Telaprevir), which looks very promising in terms of reducing treatment for geno 1's to 24 weeks with higher SVR rates.
The other issue is what Hep C is doing to your life in terms of friends, mates, etc. First, you might try changing your attitude. Many of us here with hepatitis c have partners. Not on the first date, but you might find that disclosing your Hep C status to someone you're serious about and have trust in, may not get the reaction you fear. On the other hand, if you can't turn this mental corner, then maybe treating now is best for you as the virus seems to have significantly affected your quality of life. Personally, I'd work on the attitude changing part first, maybe with a therapist and if that doesn't work, go with Pegasys or try and get into the next round of VX-950 (Teleprevir) trials.
All the best,
-- Jim
Two issues really, but of course related.
Medically, if Pegasys worked last time -- and by "worked" I mean bringing your viral load down to zero within 12 weeks -- then I'd go again with Pegasys a second time, since it should work again as opposed to trying a different interferon.
That said, given the fact you were only a stage 1 at the last biopsy, you might consider getting another biopsy or alternatively getting a Fibroscan to access your liver damage. Fibroscan is available in several trial centers in the country and selectively offered to some patients here by an MD under the screen name "hepatitisresearcher."
If it does turn out you still have little or no liver damage, a very reasonable decision would be to wait at least for the trial results of VX-950 (Telaprevir), which looks very promising in terms of reducing treatment for geno 1's to 24 weeks with higher SVR rates.
The other issue is what Hep C is doing to your life in terms of friends, mates, etc. First, you might try changing your attitude. Many of us here with hepatitis c have partners. Not on the first date, but you might find that disclosing your Hep C status to someone you're serious about and have trust in, may not get the reaction you fear. On the other hand, if you can't turn this mental corner, then maybe treating now is best for you as the virus seems to have significantly affected your quality of life. Personally, I'd work on the attitude changing part first, maybe with a therapist and if that doesn't work, go with Pegasys or try and get into the next round of VX-950 (Teleprevir) trials.
All the best,
-- Jim
forgot to mention (though I think of mentioned everything, ha ha!) that I get a lot out of talking to my psychiatrist, or therapist...sometimes talking to a professional like this is great, cause they don't just tell you what people think you want to hear, like some of our intimates...and this is stuff we need to hear...
hi, this is only my opinion, hopefully you'll get many opinions...not to make this a blaming post, cause I hate to buy into blame and shame, those aren't contructive emotions in my view...but sometimes I think hep c can be a way for us to isolate and have a catch-all reason for all of our problems, whether they are related or not...it's just a disease, we just have it, it's not who we are...I have friends who are not afflicted with any disease who have the same sort of problems you have...
I don't remember if you mentioned if you have any disabilities that could prevent you from going out, etc., before (if and when) you decide to treat...and even if you do treat again, you "might" have energy sometimes, and can still enjoy things out of the house, at least sometimes...guess you have to work with that situation day by day...
Do you have any hobbies or interests that you really enjoy? sometimes the mild to moderate depression that we can have in having this disease (and sometimes coming from the disease) can take away our joy in life, and things that used to interest us are left by the wayside...maybe you can try picking them up again if this is your case? Even if you like going to museums, or something of that sort, many times there are clubs, etc connected with these types of interests and activities...
I know it's hard to get yourself to sign up for these types of things, I've been there....but if you just force yourself, you might find youre pleasantly surprised to find yourself enjoying your interests with other like-minded people...course, don't think that the "club" or other people are going to do all the work for you, sometimes we have to put out our hand and take the first iniative, and not get too dissapointed if we don't always get the results we want, we keep on trying...
Even if you don't find the love of your life doing these types of activities, maybe to find some friends would make you much more contented then you are now...
I think sometimes that mates-for-life show up in the most day-to-day circumstances, grocery shopping, etc...and that is sometimes because we are putting out happy, comfortable vibes and that can attract people to us...but of course, sometimes we have to work for that joy and contentment in the first place....ask yourself, if you were some person out there, would you be attracted to yourself? and then work from there....
Sometimes these things are inside jobs that we have to work on first...and of course, if youre up to it, there are more physical things to do, dancing, swimming, hiking clubs, gym classes, yoga, etc...I've heard it's a good idea to try and build up physical strength before you treat anyway...and nothing is better to relieve depression...so these types of activities work on many levels...even if it's just long walks in nature...for me my dog is really important to my happiness, as weird as that sounds...
Also, doing what you're doing now is good, to talk to other people who are on the same path with this disease can be very healing, sometimes people that don't have this just don't fully understand, like people who do...additionally, it's a way to educate yourself about the disease, the doctors, treatments, etc things that you might not know already...though I do think it's important to leave the house now and then, and not get glued to the computer ALL the time...sif you can of course...There are also hep c support groups...and if I remember correctly, there are hep c dating groups? there used to be anyway...well, that's my take on the non-medical stuff, I guess some of that type of advice you can get from here, but please rely on your doctors first and foremost...best of luck with all of this!
I don't remember if you mentioned if you have any disabilities that could prevent you from going out, etc., before (if and when) you decide to treat...and even if you do treat again, you "might" have energy sometimes, and can still enjoy things out of the house, at least sometimes...guess you have to work with that situation day by day...
Do you have any hobbies or interests that you really enjoy? sometimes the mild to moderate depression that we can have in having this disease (and sometimes coming from the disease) can take away our joy in life, and things that used to interest us are left by the wayside...maybe you can try picking them up again if this is your case? Even if you like going to museums, or something of that sort, many times there are clubs, etc connected with these types of interests and activities...
I know it's hard to get yourself to sign up for these types of things, I've been there....but if you just force yourself, you might find youre pleasantly surprised to find yourself enjoying your interests with other like-minded people...course, don't think that the "club" or other people are going to do all the work for you, sometimes we have to put out our hand and take the first iniative, and not get too dissapointed if we don't always get the results we want, we keep on trying...
Even if you don't find the love of your life doing these types of activities, maybe to find some friends would make you much more contented then you are now...
I think sometimes that mates-for-life show up in the most day-to-day circumstances, grocery shopping, etc...and that is sometimes because we are putting out happy, comfortable vibes and that can attract people to us...but of course, sometimes we have to work for that joy and contentment in the first place....ask yourself, if you were some person out there, would you be attracted to yourself? and then work from there....
Sometimes these things are inside jobs that we have to work on first...and of course, if youre up to it, there are more physical things to do, dancing, swimming, hiking clubs, gym classes, yoga, etc...I've heard it's a good idea to try and build up physical strength before you treat anyway...and nothing is better to relieve depression...so these types of activities work on many levels...even if it's just long walks in nature...for me my dog is really important to my happiness, as weird as that sounds...
Also, doing what you're doing now is good, to talk to other people who are on the same path with this disease can be very healing, sometimes people that don't have this just don't fully understand, like people who do...additionally, it's a way to educate yourself about the disease, the doctors, treatments, etc things that you might not know already...though I do think it's important to leave the house now and then, and not get glued to the computer ALL the time...sif you can of course...There are also hep c support groups...and if I remember correctly, there are hep c dating groups? there used to be anyway...well, that's my take on the non-medical stuff, I guess some of that type of advice you can get from here, but please rely on your doctors first and foremost...best of luck with all of this!
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