LOL, I needed some good humor today. I will make sure stabbing people is on my list of things NOT to do and hope I don't get my lists mixed up. I do live alone so chalk one up for staying in isolation, seclusion and otherwise being a hermit.
Sorry for being all pissy Gail. I do hope everyone who needs AD's gets them. I would hate to be the one getting stabbed cuz I talked someone out of getting meds.
Ron
James10500 said
Jun 21, 2011
We all know these meds effect us all differently. There is no single answer for anyone. I think if you live alone, it's one thing you really don't need to get along with others if you experience RIBA rage.Lashing out on the Internet probably works, there are many places to do that. But when the sx induced by the medication start to effect your relationships and you can handle the sx induced from the meds by adding AD's I suggest people take them.
"Gee officer sorry I stabbed him in the chest with a kitchen knife, but I just didn't want to run to the medicine cabinet to deal with the serious sx of the medication I'm on." ......lol. Cracks me up.
Peace Y'all,
James
Ron Gilbert said
Jun 21, 2011
Ok Jan, thanks for letting me know.
Thanks Steff, an encouragement as always.
Hi Kirstin, so glad to hear about the sleeping pills. Now there is one I would gladly take if I was having any trouble sleeping. I just cant function if I don't sleep. Keep up the great work.
Ron
jan said
Jun 21, 2011
Hi Ron,
I have no experience at all with Ads and no idea if they would have helped. I was like you and didn't want to take any exrta drugs what so ever. Didn't even take paracetamol' I know my mental state was nearly unbearable and I was close to stopping tx sometimes. Listening to people on here that took ADs gave me the impression that tx was mentally easier for them. My specialist did not mention Ads before or during tx, I didn't know they were an option. Maybe it's different in america.
Wishing you the best,
Jan x
greenqueen said
Jun 21, 2011
Hi Ron,
It's always a personal choice whether or not to take any extra meds along with tx, as it is the same choice whether a person decides to treat or not. A lot of people here have taken Anti D's dung tx and found them helpful, but not everyone feels the same way. We all deal with it it our own way and I certainly wouldn't want you to feel odd because you don't want to take any extra meds.
I didn't take Anti'D's, as I'd had a bad experience with them a few years before.
Love Steff xx
Kirstin said
Jun 21, 2011
I hear ya Ron
Ron Gilbert said
Jun 21, 2011
Hi Jan,
My comment concerning the idea that everyone here should be on AD's was directed at the forum in general, not at you. The post I got in response did a good job of confirming how there is an underlying tone here that everyone on tx should be on AD's.
My question to you Jan was "how do you know they would have helped you?" "What experience do you have with taking AD"s?"
Call my an odd-ball. Its ok. I know Im fighting the trend here. I am a sceptic and proceed with extreme caution when it comes to doctors and medications. Drugs do different things to different people at different times depending on the individual situation. I'm just saying that Im not going to take a chance on having a bad experience with AD's and the drugs Im already on. I don't know what they will do to me and I have no experience with them.
I probably shouldn't get started, lol because I could really unload, lol. But I will say that Doctors are telling people NOT to take "too much" Vitamin D (more than 300 units) because of "toxicity" issues! What a flipping JOKE! Are you kidding me??? I have had toxic sludge pouring out of my backside for 8 weeks "running" (pun intended) lol. And DR has the nerve to tell me NOT to take Vit D??
NO JOKE, AS MANY AS 50% OF PEOPLE ON TX HAVE FAILED BECAUSE OF NOT GETTING VITAMIN D.
It makes me mad as h*ll that Dr pushes, more drugs, more drugs, more drugs, without regard to things he dosn't make money off of. He has have the system stacked against us.
We have to look out for our own best interest because Dr is busy running a multi-billion dollar industry. "More drugs" will never be my first option for dealing with problems and it irritates me to no end that when people show up in this forum they are told "take Ad's" "take AD's" "take AD's" by members who don't know them and are NOT Doctors.
Ron
-- Edited by Ron Gilbert on Tuesday 21st of June 2011 03:17:44 PM
-- Edited by Ron Gilbert on Tuesday 21st of June 2011 03:18:45 PM
-- Edited by Ron Gilbert on Tuesday 21st of June 2011 03:27:25 PM
jan said
Jun 21, 2011
Hi Ron,
Pat asked if I had any sx. I was giving him an answer as I saw it from my point of view and how it was for me. I said I should have taken ADs in hind sight because I think I made it harder by not taking them but this is just my opinion and my experience. It's up to the individual how they should handle their tx. I am certainly not saying everyone should automatically take them, just that I think I should of. Only trying to help.:(
Jan x
Ron Gilbert said
Jun 20, 2011
Thanks Pat, we are not trying to take over your thread. Just having some friendly batting back and forth of thoughts. Glad to see you here posting Pat.
Thanks for the candid post Moo. It is well taken and respected. HOWEVER,
"starting a regiment of AD's a few months before starting treatment, will increase the chances of SVR"
is proof that people here think EVERYONE should take AD's with tx. Yet it is an undeniable fact that not everyone needs them.
AGAIN, I am all for those who do need AD's taking AD's. But not EVERYONE needs them
Im having just as much anxiety and fatigue and mood swings as anyone else here and probably more considering I'm taking 1400 mgs of Riba each and every day, but that does not mean I need to get on AD's. The thing is, Im not the sort to run to the medicine cabnet if there is a good chance I can deal with it on my own WITHOUT MEDICINES.
Having anxiety is part of doing tx and just because a drug "will help" does not mean its the right thing to do. So far I am doing just fine by staying calm, avoiding stressful situations, taking walks and hot showers, staying on guard over my moods.
My stand will continue to be,
"I do believe if a person has a history of true depression or is having thoughts of hurting themselves that AD's should be considered as an option"
because more drugs is not always the best answer to our problems. Iv seen ways too many people get on that slippery slope and end up with a dozen (or more) drugs to take every singe day for the rest of their lives. Its a vicious cycle that I wont ever be a part of, thank you very much.
Ron
-- Edited by Ron Gilbert on Monday 20th of June 2011 08:53:37 PM
Moocow said
Jun 20, 2011
I'm just wondering because so many people in this forum think EVERYONE here should be taking AD's as if its some sort of candy or something.
I do believe if a person has a history of true depression or is having thoughts of hurting themselves that AD's should be considered as an option.
Ron, I've done tons of research on the value of AD's and treatment- and there is a reason that using AD's as a support medication can benefit people on HCV treatment.
Interferon will depress you- even though you don't have a history of depression, this drug will depress you. Suicide attempts or successes are not uncommon with the use of interferon. The Riba messes with you in a different manner- unidentifiable anxiety is the most common.
People that have NEVER had a psychiatric event in their lives are guaranteed some type of event, marked or severe- while using these drugs. So far, it appears you just got started, so you might or might not be experiencing the mood swings that are common with this treatment regiment.
I would bet that some of us that have done treatment would recognize mood changes in you if we were sitting in the same room, conversing. Only because we have been there.
It has been proven with clinical studies that patients that use AD's in conjunction with treatment, in fact starting a regiment of AD's a few months before starting treatment, will increase the chances of SVR. So, there is a reason so many of us suggest using them for the duration of treatment, then weaning off of them.
As these drugs build in your body, changes do occur- emotionally, mentally and physically. This cannot be denied.
-- Edited by Moocow on Monday 20th of June 2011 07:25:37 PM
pmrad5 said
Jun 20, 2011
Ron,
I think Jan may have entered her post in the wrong place.
Pat
Ron Gilbert said
Jun 20, 2011
Hi Jan,
Thanks for the "AD's" advice, but no thanks.
I don't know how Pat feels about it but I'm not taking ANY additional medicinal substances unless I absolutely have too. It seems very odd to me that you would start recommending AD's (to people you don't know) a year after tx when you didn't even take them yourself. Do you have experience with AD's?? How do you know they would have helped you??
I'm just wondering because so many people in this forum think EVERYONE here should be taking AD's as if its some sort of candy or something.
I do believe if a person has a history of true depression or is having thoughts of hurting themselves that AD's should be considered as an option.
As for me, I understand that this is a TEMPORARY tx plan that I CHOSE to take. So far, I have been able to keep all this in perspective and don't need additional medicines.
Ron
jan said
Jun 20, 2011
sided effects:- hair loss. fatigue. rash. over active thyroid. brain turned to scramble egg. I managed without any additional drugs for side effects but looking back I should have taken anti depressants. This would of helped a lot with the mental side of things which I found the hardest to cope with. 12 months post tx and everything is back to normal, thyroid returned to normal when tx finished.
Love Jan x
pmrad5 said
Jun 18, 2011
Yeah,
I don't know that much about the drugs I just know they will be free lol. I have health ins.
I probably could get incivek, but I thought I would try this route first
Pat
Ron Gilbert said
Jun 18, 2011
Looks like they make"inhibbies"
pmrad5 said
Jun 18, 2011
It will be a newer drug combo from Pharmesett.
Kirstin said
Jun 18, 2011
Thanks Pat, gotta say, it felt good to find out I was UND. A day I wont ever forget
I am 3a as well, lucky I suppose in this fight.
So you'll be doing the combo treatment with the added telaprevir/Incivek?. Yor chances are great my friend, it will be you soon . I am only on Interferon & Riba & see, UND already. You asked about SX's.. I am not sure of the added ones due to the new drug but ATM for me, apart from the norm that everyone seems to go through I haven't been too bad. Like everyone says, it's hard some days but very very doable. You dont have to be nervous, although understandable. My best advice, which came from the best possible source, the people here, is to just relax, take it easy on yourself, don't drink, eat plenty of healthy food & start with the Vit D now.
I have my fingers crossed & sending my best wishes your way for the start of your trial xxxx
pmrad5 said
Jun 18, 2011
Kirstin,
Way to go on being UND. I hope its me soon too. Hopefully will start clinical trial at Duke in the next month.
Pat
Kirstin said
Jun 18, 2011
Pat, the red spots on your chest are called spider naevi.. My chest was covered in them, I also had several on my upper arms. Since I stopped drinking & started TX most have disappeared & the rest have faded dramatically. I am UND (I am on my 6th week of treatment), & I kinda knew that before I had my labs done that I would be, I just got the feeling I was going to be due to the fading.
pmrad5 said
Jun 18, 2011
thanks for comments folks. I'm just a little nervous right now. Jan, did you have many sx?
I have had itching which has gotten better lately. I have a few red dots on chest/neck. Like you i stopped drinking in Jan. relapse a couple of times but otherwise clean. I am now dealing with some mild to moderate rectal bleeding (bright red) I don't believe its related to hep c.
thanks again
Pat
jan said
Jun 18, 2011
Hello Pat,
I am 51 and was infected with hep c for around 30 years or so. I drank frequently and during the last few years drank heavily. When I found out I had hep c I stopped drinking and started treatment. I had moderate liver damage. Treatment was successful and my specialist said my liver would return to normal. My genotype was 3a.
I haven't touched alcohol since, 2 years this july.
I hope this puts your mind at rest a little. When I found out I had hep c all I could think about was the amount of alcohol I had drank and how sure I was that my liver would be totally useless. I was lucky.
Love Jan x
Kirstin said
Jun 17, 2011
Hi pmrad5,
I dont know about drinking heavily for 30 years but I can tell you of my experience. I never drank, not a drop of alcohol for most of my life until a few years ago. Because of the Hep C & drinking for that relatively short time I now have heavy Stage 1 scarring/fibroisis. I was told that with HepC that for every one drink we have we are causing 7 drinks of damage to our liver. You could be different though, I have my fingers crossed & good luck on the bx
Ron Gilbert said
Jun 17, 2011
My Dad drank heavy for that long and has no problem with his liver. He never had a biopsy but he is 83 years old now, so.... what the h*ll.... LOL.
To his credit he did quit after that 30 year run. I really don't think he would be 83 now if he hadn't quite the non-sense.
Ron
-- Edited by Ron Gilbert on Friday 17th of June 2011 11:27:18 PM
pmrad5 said
Jun 17, 2011
Hi guys and gals,
This may be a dumb ? but has anyone out there drank heavy for 30 yrs. and been infected for 20 and had minimal to moderate fibrosis on bx. I'm hoping for that myself. Should have bx in next 2/3 weeks.Had ultrasound and blood work in Jan. showed OK but I've heard bx only sure way to diag. cirr.
Pat
Male 47 infected 89-90 heavy drinker since 80 geno 1 vl= 2.7 mil
Keep up the fight !
James
Very good James,
LOL, I needed some good humor today. I will make sure stabbing people is on my list of things NOT to do and hope I don't get my lists mixed up. I do live alone so chalk one up for staying in isolation, seclusion and otherwise being a hermit.
Sorry for being all pissy Gail. I do hope everyone who needs AD's gets them. I would hate to be the one getting stabbed cuz I talked someone out of getting meds.
Ron
"Gee officer sorry I stabbed him in the chest with a kitchen knife, but I just didn't want to run to the medicine cabinet to deal with the serious sx of the medication I'm on." ......lol. Cracks me up.
Peace Y'all,
James
Ok Jan, thanks for letting me know.
Thanks Steff, an encouragement as always.
Hi Kirstin, so glad to hear about the sleeping pills. Now there is one I would gladly take if I was having any trouble sleeping. I just cant function if I don't sleep. Keep up the great work.
Ron
Hi Ron,
I have no experience at all with Ads and no idea if they would have helped. I was like you and didn't want to take any exrta drugs what so ever. Didn't even take paracetamol' I know my mental state was nearly unbearable and I was close to stopping tx sometimes. Listening to people on here that took ADs gave me the impression that tx was mentally easier for them. My specialist did not mention Ads before or during tx, I didn't know they were an option. Maybe it's different in america.
Wishing you the best,
Jan x
Hi Ron,
It's always a personal choice whether or not to take any extra meds along with tx, as it is the same choice whether a person decides to treat or not. A lot of people here have taken Anti D's dung tx and found them helpful, but not everyone feels the same way. We all deal with it it our own way and I certainly wouldn't want you to feel odd because you don't want to take any extra meds.
I didn't take Anti'D's, as I'd had a bad experience with them a few years before.
Love Steff xx
I hear ya Ron
Hi Jan,
My comment concerning the idea that everyone here should be on AD's was directed at the forum in general, not at you. The post I got in response did a good job of confirming how there is an underlying tone here that everyone on tx should be on AD's.
My question to you Jan was "how do you know they would have helped you?" "What experience do you have with taking AD"s?"
Call my an odd-ball. Its ok. I know Im fighting the trend here. I am a sceptic and proceed with extreme caution when it comes to doctors and medications. Drugs do different things to different people at different times depending on the individual situation. I'm just saying that Im not going to take a chance on having a bad experience with AD's and the drugs Im already on. I don't know what they will do to me and I have no experience with them.
I probably shouldn't get started, lol because I could really unload, lol. But I will say that Doctors are telling people NOT to take "too much" Vitamin D (more than 300 units) because of "toxicity" issues! What a flipping JOKE! Are you kidding me??? I have had toxic sludge pouring out of my backside for 8 weeks "running" (pun intended) lol. And DR has the nerve to tell me NOT to take Vit D??
NO JOKE, AS MANY AS 50% OF PEOPLE ON TX HAVE FAILED BECAUSE OF NOT GETTING VITAMIN D.
It makes me mad as h*ll that Dr pushes, more drugs, more drugs, more drugs, without regard to things he dosn't make money off of. He has have the system stacked against us.
We have to look out for our own best interest because Dr is busy running a multi-billion dollar industry. "More drugs" will never be my first option for dealing with problems and it irritates me to no end that when people show up in this forum they are told "take Ad's" "take AD's" "take AD's" by members who don't know them and are NOT Doctors.
Ron
-- Edited by Ron Gilbert on Tuesday 21st of June 2011 03:17:44 PM
-- Edited by Ron Gilbert on Tuesday 21st of June 2011 03:18:45 PM
-- Edited by Ron Gilbert on Tuesday 21st of June 2011 03:27:25 PM
Hi Ron,
Pat asked if I had any sx. I was giving him an answer as I saw it from my point of view and how it was for me. I said I should have taken ADs in hind sight because I think I made it harder by not taking them but this is just my opinion and my experience. It's up to the individual how they should handle their tx. I am certainly not saying everyone should automatically take them, just that I think I should of. Only trying to help.:(
Jan x
Thanks Pat, we are not trying to take over your thread. Just having some friendly batting back and forth of thoughts. Glad to see you here posting Pat.
Thanks for the candid post Moo. It is well taken and respected. HOWEVER,
"starting a regiment of AD's a few months before starting treatment, will increase the chances of SVR"
is proof that people here think EVERYONE should take AD's with tx. Yet it is an undeniable fact that not everyone needs them.
AGAIN, I am all for those who do need AD's taking AD's. But not EVERYONE needs them
Im having just as much anxiety and fatigue and mood swings as anyone else here and probably more considering I'm taking 1400 mgs of Riba each and every day, but that does not mean I need to get on AD's. The thing is, Im not the sort to run to the medicine cabnet if there is a good chance I can deal with it on my own WITHOUT MEDICINES.
Having anxiety is part of doing tx and just because a drug "will help" does not mean its the right thing to do. So far I am doing just fine by staying calm, avoiding stressful situations, taking walks and hot showers, staying on guard over my moods.
My stand will continue to be,
-- Edited by Ron Gilbert on Monday 20th of June 2011 08:53:37 PM
Ron, I've done tons of research on the value of AD's and treatment- and there is a reason that using AD's as a support medication can benefit people on HCV treatment.
Interferon will depress you- even though you don't have a history of depression, this drug will depress you. Suicide attempts or successes are not uncommon with the use of interferon. The Riba messes with you in a different manner- unidentifiable anxiety is the most common.
People that have NEVER had a psychiatric event in their lives are guaranteed some type of event, marked or severe- while using these drugs. So far, it appears you just got started, so you might or might not be experiencing the mood swings that are common with this treatment regiment.
I would bet that some of us that have done treatment would recognize mood changes in you if we were sitting in the same room, conversing. Only because we have been there.
It has been proven with clinical studies that patients that use AD's in conjunction with treatment, in fact starting a regiment of AD's a few months before starting treatment, will increase the chances of SVR. So, there is a reason so many of us suggest using them for the duration of treatment, then weaning off of them.
As these drugs build in your body, changes do occur- emotionally, mentally and physically. This cannot be denied.
-- Edited by Moocow on Monday 20th of June 2011 07:25:37 PM
Ron,
I think Jan may have entered her post in the wrong place.
Pat
Hi Jan,
Thanks for the "AD's" advice, but no thanks.
I don't know how Pat feels about it but I'm not taking ANY additional medicinal substances unless I absolutely have too. It seems very odd to me that you would start recommending AD's (to people you don't know) a year after tx when you didn't even take them yourself. Do you have experience with AD's?? How do you know they would have helped you??
I'm just wondering because so many people in this forum think EVERYONE here should be taking AD's as if its some sort of candy or something.
I do believe if a person has a history of true depression or is having thoughts of hurting themselves that AD's should be considered as an option.
As for me, I understand that this is a TEMPORARY tx plan that I CHOSE to take. So far, I have been able to keep all this in perspective and don't need additional medicines.
Ron
sided effects:- hair loss. fatigue. rash. over active thyroid. brain turned to scramble egg. I managed without any additional drugs for side effects but looking back I should have taken anti depressants. This would of helped a lot with the mental side of things which I found the hardest to cope with. 12 months post tx and everything is back to normal, thyroid returned to normal when tx finished.
Love Jan x
Yeah,
I don't know that much about the drugs I just know they will be free lol. I have health ins.
I probably could get incivek, but I thought I would try this route first
Pat
Looks like they make"inhibbies"
It will be a newer drug combo from Pharmesett.
Thanks Pat, gotta say, it felt good to find out I was UND. A day I wont ever forget
I am 3a as well, lucky I suppose in this fight.
So you'll be doing the combo treatment with the added telaprevir/Incivek?. Yor chances are great my friend, it will be you soon
. I am only on Interferon & Riba & see, UND already. You asked about SX's.. I am not sure of the added ones due to the new drug but ATM for me, apart from the norm that everyone seems to go through I haven't been too bad. Like everyone says, it's hard some days but very very doable. You dont have to be nervous, although understandable. My best advice, which came from the best possible source, the people here, is to just relax, take it easy on yourself, don't drink, eat plenty of healthy food & start with the Vit D now.
I have my fingers crossed & sending my best wishes your way for the start of your trial xxxx
Kirstin,
Way to go on being UND. I hope its me soon too. Hopefully will start clinical trial at Duke in the next month.
Pat
Pat, the red spots on your chest are called spider naevi.. My chest was covered in them, I also had several on my upper arms. Since I stopped drinking & started TX most have disappeared & the rest have faded dramatically. I am UND (I am on my 6th week of treatment), & I kinda knew that before I had my labs done that I would be, I just got the feeling I was going to be due to the fading.
thanks for comments folks. I'm just a little nervous right now. Jan, did you have many sx?
I have had itching which has gotten better lately. I have a few red dots on chest/neck. Like you i stopped drinking in Jan. relapse a couple of times but otherwise clean. I am now dealing with some mild to moderate rectal bleeding (bright red) I don't believe its related to hep c.
thanks again
Pat
Hello Pat,
I am 51 and was infected with hep c for around 30 years or so. I drank frequently and during the last few years drank heavily. When I found out I had hep c I stopped drinking and started treatment. I had moderate liver damage. Treatment was successful and my specialist said my liver would return to normal. My genotype was 3a.
I haven't touched alcohol since, 2 years this july.
I hope this puts your mind at rest a little. When I found out I had hep c all I could think about was the amount of alcohol I had drank and how sure I was that my liver would be totally useless. I was lucky.
Love Jan x
Hi pmrad5,
I dont know about drinking heavily for 30 years but I can tell you of my experience. I never drank, not a drop of alcohol for most of my life until a few years ago. Because of the Hep C & drinking for that relatively short time I now have heavy Stage 1 scarring/fibroisis. I was told that with HepC that for every one drink we have we are causing 7 drinks of damage to our liver. You could be different though, I have my fingers crossed & good luck on the bx
My Dad drank heavy for that long and has no problem with his liver. He never had a biopsy but he is 83 years old now, so.... what the h*ll.... LOL.
To his credit he did quit after that 30 year run. I really don't think he would be 83 now if he hadn't quite the non-sense.
Ron
-- Edited by Ron Gilbert on Friday 17th of June 2011 11:27:18 PM
Hi guys and gals,
This may be a dumb ? but has anyone out there drank heavy for 30 yrs. and been infected for 20 and had minimal to moderate fibrosis on bx. I'm hoping for that myself. Should have bx in next 2/3 weeks.Had ultrasound and blood work in Jan. showed OK but I've heard bx only sure way to diag. cirr.
Pat
Male 47 infected 89-90 heavy drinker since 80 geno 1 vl= 2.7 mil