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Interferon-Ribavirin support groups
I am a single parent of a beautiful talented daughter, and I was recently diagnosed with HCV positive(chronic). I have the kind of HCV positive(chronic) that does not respond so wellto interferon treatments.
I have choosen to try this Interferon-Ribavirin therapy regardless with hopes of getting better. I start this therapy soon after the new year.I live in Bend,Oregon and feel I need to attend a support group either for Interferon-Ribavirin therapy users or HCV positive(chronic) patients.
Do you know if there are support groups in my area???? I have very limited resources and no PC of my own, I am using a friends today to contact you. Any advice of help you could offer would be sincerely appreciated!!!
Thank you for your time and consideration,
T./cleanliver
I have choosen to try this Interferon-Ribavirin therapy regardless with hopes of getting better. I start this therapy soon after the new year.I live in Bend,Oregon and feel I need to attend a support group either for Interferon-Ribavirin therapy users or HCV positive(chronic) patients.
Do you know if there are support groups in my area???? I have very limited resources and no PC of my own, I am using a friends today to contact you. Any advice of help you could offer would be sincerely appreciated!!!
Thank you for your time and consideration,
T./cleanliver
I'll get on it and see what I can find...I'm sure others will to, the best of luck to you...
Here are a few websites with some places in Oregon that have support groups (though they probably overlap somewhat):
<a href="http://hepatitis-central.com/hcv/support/or/toc.html">First site</a>
<a href="http://herpes-coldsores.com/std/hepatitis_support_groups.htm">Second site</a>
<a href="http://www.scn.org/health/hepatitis/supportg.htm">Third site</a>
One of your best bets might be to call around to any gastroenterologist or hepatologist doctor's offices in the Bend area and ask them where the local Hep C support group is. Other places to try calling are the local hosptials in your area (especially if there is a teaching hospital nearby). Quite often the support groups meet in a hospital setting.
May God's blessings and mercy be upon you.
TnHepGuy
<a href="http://hepatitis-central.com/hcv/support/or/toc.html">First site</a>
<a href="http://herpes-coldsores.com/std/hepatitis_support_groups.htm">Second site</a>
<a href="http://www.scn.org/health/hepatitis/supportg.htm">Third site</a>
One of your best bets might be to call around to any gastroenterologist or hepatologist doctor's offices in the Bend area and ask them where the local Hep C support group is. Other places to try calling are the local hosptials in your area (especially if there is a teaching hospital nearby). Quite often the support groups meet in a hospital setting.
May God's blessings and mercy be upon you.
TnHepGuy
Good luck with your treatment. I'm a 1a - my count was 34 million when I began treatment back on 9/1/05 & I'm VERY happy to report that I was undectable @ my 12 week test (yahoo!!) I will remain on treatment till the bitter end (48 weeks - treatment is a daily shot of infergen & rib 4x per day) I find this site to be extremely informative - see what you can do about getting a computer as there are some great sites out there that can help.
allright!!! congratulations on undetectible status...big drop!-wish you all the best,Good Luck
AWSEOOOOME!!! That is great news for you, thanks for sharing it with us. Gives me hope.
Don
Don
My best to you! :) I don't know how you do daily shots...I'm doing 3 weekly, 15 mcg, well actually about 18 mcg cuz I suck every last drop out of the vial...and it's about to kick my butt. The day following the shot I am basically worthless, I sleep a lot. It's going to be a long 48 weeks...I just started 12/2...hopeful it will get better as the weeks pass. Anxious to have 4 week PCR to see if it's even working on me, perhaps an undetectable will make it a little easier to get through. :)
Congratulations on your 12 wk!! that is awesome! I was also undetectable at 12 wks. I will do #14 thurs. i know you are on daily shots (wow) what week are you on??
cleanliver - Welcome. A computer will be your friend in this. Adequate computers can be had for free or cheap - same with internet access as long as you have a phone line. Let me know if you want further info.
Kayray - That is so great! You must be on Cloud 9!
2irish - Congrats again to you, too. What happened to the thread where you posted your news? Are threads going missing, or am I cracking up?
Kayray - That is so great! You must be on Cloud 9!
2irish - Congrats again to you, too. What happened to the thread where you posted your news? Are threads going missing, or am I cracking up?
hey, i thought it was ME! I kept looking for it because i wanted to reply and i can't find it. that is crazy...now we have to figure out what was so offensive??? maybe a$$ was thrown in a few times?? Anyway, thanks so much to you & everyone elase for your good wishes. I am wondering, truly, how are you doing now? I know you are always so upbeat & that is so helpful to all of us but you also have a lot of sides, right? how much longer for you??
The vanishing thread syndrome has happened to me a few times in a couple weeks it seems. I guess poop-in-the-bed discussion has gone the way of the unmentionable female appendage. Or maybe it was the swat to the derrierre? Uh-oh - now this thread's in trouble!
Call me an idiot, but I'll take playful humor - misguided as it may be - over mean spirited name calling anyday.
I'm doing OK, thanks. Better for your asking. Had a couple rough days last week with the anemia, but I'm limping along OK again. Looks like I'll get off light with 24 weeks - I'm at about 15 now. Hopefully I'll end the race at fulldose - but I wouldn't be shocked to see them yank a riba pill on me soon.
How are you hanging?
Call me an idiot, but I'll take playful humor - misguided as it may be - over mean spirited name calling anyday.
I'm doing OK, thanks. Better for your asking. Had a couple rough days last week with the anemia, but I'm limping along OK again. Looks like I'll get off light with 24 weeks - I'm at about 15 now. Hopefully I'll end the race at fulldose - but I wouldn't be shocked to see them yank a riba pill on me soon.
How are you hanging?
i am with you, goof. and the unmentionable female appendage thread was the best laugh i have had in some time! laughter is the best medicine, yes??? anyway, i am doing surprisingly well & am afraid if i talk about it too much, i might jinx myself! afterall, i am only on #14/48 (tomarrow night). so far, it is doable, after the anemia issue was cleared up. But what i wonder is your hgb is still pretty low & obviously, you are pretty tough to be limping along at full dose. since you cleared at appropriate times, couldn't you lower it a bit? for comfort sake? when they made me lower mine from 1000 to 800, i felt worlds different. then again, you have only 10 more weeks to go. i am sure you know what you are doing but i think you keep a lot of your complaints to yourself and just hope you are doing as well as you sound! we need you!
What is the deal w/the missing threads????? Anyone??
What is the deal w/the missing threads????? Anyone??
What unmentionable appendage thread? awwww, you guys didn't tell me about this???maybe I should go back to work,ha ha! Goof, rather be in an "idiot's paradise" then a boxing ring any day....
angie! i did call yesterday twice, you were biz...didn't leave a message. are you in tomarrow? i have a day home.
angie! i did call yesterday twice, you were biz...didn't leave a message. are you in tomarrow? i have a day home.
Thanks for the concern - I'm not going to let 'em deep six me just yet. As long as I'm not asked to walk or think, I seem to do OK. 'Course that does limit one's activities.
Too bad about the zapped thread - I think I may have had a pithy response to forsee's glad-bag humor, but since that was yesterday - I don't remember :(
Hey how about that clever 'To' tag to the left? Who said I'm not running on all my cognitive cylinders? Huh?
Too bad about the zapped thread - I think I may have had a pithy response to forsee's glad-bag humor, but since that was yesterday - I don't remember :(
Hey how about that clever 'To' tag to the left? Who said I'm not running on all my cognitive cylinders? Huh?
Hey, don't they screen calls in Chicago? he he...you gotta say it's you on the line...for all I know it's some ex-boyfriend foaming at the mouth about his blown up car or something, ha ha! On my trail with bared fangs! Oh, I loved not wisely but too well....
And I'm getting blind as a bat over here so I can barely read the caller ID! Old age, who invented that?? maybe the guy who wrote Logan's Run was on to something!....I think I'm drifting into the arena of the unwell!!!better sign off... Can you imagine me on tx! YIKES!
And I'm getting blind as a bat over here so I can barely read the caller ID! Old age, who invented that?? maybe the guy who wrote Logan's Run was on to something!....I think I'm drifting into the arena of the unwell!!!better sign off... Can you imagine me on tx! YIKES!
Hi, May I speak to Angie? It's 2irish calling.
Two Irish? Is this a conference call?
No. Just me. Listen - just tell her it's 2irish on the phone.
It's a remarkably clear line - are you sure your calling from overseas?
I'm not overseas. I'm 2irish. TWO-IRISH.
Listen sweetie, you're not too Irish at all. You can't help where you were born. And to be honest, you sound more mid-western than Irish.
Listen, I want Forseegood.
Yeah. Me too. Call an optometrist - we can't can't help you. And besides, Angie's having a tryst right now.
Two Irish? Is this a conference call?
No. Just me. Listen - just tell her it's 2irish on the phone.
It's a remarkably clear line - are you sure your calling from overseas?
I'm not overseas. I'm 2irish. TWO-IRISH.
Listen sweetie, you're not too Irish at all. You can't help where you were born. And to be honest, you sound more mid-western than Irish.
Listen, I want Forseegood.
Yeah. Me too. Call an optometrist - we can't can't help you. And besides, Angie's having a tryst right now.
Hi, I have HepC of the worse (hardest to cure) type 1.
I have been on two trials over the past 3 years - one for 52 weeks and the other for 48 weeks. Unfortunately, both times after 3 months, the virus was no longer detected. After 18 months the first time it came back and after around 6 months the second time, it came back.
I am now at a standstill, as there is no other treatment/trials running currently and doctors will not justify putting me back on a trial unless I get scerosis of the liver.
It is very disheartening, as I caught this virus through being severely beaten and raped by a junkie.
Is there any other treatment/trial for this disease, as I really don't want to have it. I get sick alot, so the side effects from the interferon and rybavin didn't really worry me too much. I guess I also believed it was going to work which helped.
If someone knows of any other treatment available, I would be very grateful for your ideas/info.
Thank you
I have been on two trials over the past 3 years - one for 52 weeks and the other for 48 weeks. Unfortunately, both times after 3 months, the virus was no longer detected. After 18 months the first time it came back and after around 6 months the second time, it came back.
I am now at a standstill, as there is no other treatment/trials running currently and doctors will not justify putting me back on a trial unless I get scerosis of the liver.
It is very disheartening, as I caught this virus through being severely beaten and raped by a junkie.
Is there any other treatment/trial for this disease, as I really don't want to have it. I get sick alot, so the side effects from the interferon and rybavin didn't really worry me too much. I guess I also believed it was going to work which helped.
If someone knows of any other treatment available, I would be very grateful for your ideas/info.
Thank you
Hey, great name!
Sorry your treatments didn't stick. That's a lot of hard work! It's likely that you helped you liver during the time you were on treatment, so not all is lost by any means.
There is a promising new class of drugs called Protease Inhibitors currently in early trials. There are high hopes they will prove to be a more potent and body friendly alternative to today's standard of care. PIs may be generally available in 4 years or so, give or take.
Meanwhile, there are a number of people here who have treated more than twice with today's drugs. Infergen is a type of interferon that can work better than what most use. Also, sometimes people use higher dosages. This treatment may not be available in trials, but the drug company's may provide free meds if there's financial need.
Try introducing yourself up top in a more recent thread - many will be interested in helping you if they see your post, which they may not way down here.
Best wishes for good health.
Sorry your treatments didn't stick. That's a lot of hard work! It's likely that you helped you liver during the time you were on treatment, so not all is lost by any means.
There is a promising new class of drugs called Protease Inhibitors currently in early trials. There are high hopes they will prove to be a more potent and body friendly alternative to today's standard of care. PIs may be generally available in 4 years or so, give or take.
Meanwhile, there are a number of people here who have treated more than twice with today's drugs. Infergen is a type of interferon that can work better than what most use. Also, sometimes people use higher dosages. This treatment may not be available in trials, but the drug company's may provide free meds if there's financial need.
Try introducing yourself up top in a more recent thread - many will be interested in helping you if they see your post, which they may not way down here.
Best wishes for good health.
Hi Sheesh I To have Geno-type 1 and have been on a Clinical Trial Since June 2005. I use an Interferon Called Albuferon. I inject once every two weeks plus I take 600 mg of Ribaviron 2 twice a day. This has been fairley good for me. I have been able To tolerate the side affects pretty well. After my 3rd week on treatment my test results have been HCV Non -detectable my last test was Dec 6 2005 and I was still non- detectable. I am on a 48 week Trial and all I can do Is Hope for the best. I work In Construction and I am able to work every day. I just found this site and it seems like everyone has the same side effects. But there is some interesting topics talked about here so I will be back Thanks and good luck to all
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