Guest guest Posted June 2, 2006 Report Share Posted June 2, 2006 Nice to see you back here, Gwen! I always enjoy your posts. Sierra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2008 Report Share Posted January 2, 2008 Hi Leonie, I did not have IV antibiotics, only tablets. My dose to start was, 200 mg per day for four months, and when things improved, I went to 100mg per day,stay on that, for about three months,then when my life seem normal again, I went to 100mgs Monday,Wednesday,Saturday.This keeps all the pain away I have been on AP for about 14 months now. This worked wonders for me Regards Gwen rheumatic from North Coast Hello Leonie, Please allow me to introduce myself my name is and I live near Byron Bay in the North Coast. Like yourself I have been trying natural remedies to treat my RA. When diagnosed in Oct'05 my RF reading was considered high at 38 by my doctor. With my refusal to take all the toxic meds that the Rheumy suggested I take to myself and my doctor. My latest reading in Oct'07 was 515 as you can imagine the pain and loss of mobility that I am currently experiencing. I receive all latest e-mails from the group but for some reason cannot post anything for myself. Your e-mail has caught my eye for the following reasons. After 3 months of continually calling Dr. Mouroukas. He finally rang and explained what his approach was with this AP therapy. Like you I also am apprehensive of taking any more drugs that I have too. In speaking with the doctor he has informed me that the distance between the North Coast and Sydney would prove to be difficult in doing this AP therapy. What I would like to know if you do not mind if you do decide to do his treatment could you advise how the you find the therapy with living in Canberra, how sick you actually get. I know you haven't started yet he sounded really nice and for myself I'm quite interested in starting as I want to get better. Thank you e-mail tuffys@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 GwenIt does work? THat is certainly great to hear. Do you get infusions every month?I was hoping to get off of the prednisone...I already have osteopenia and have had to be on and off pred for over a year. I work full time and without the pred I can't function...but very worried about the bone loss. I thought I read in the Orencia info that some patients reported fatigue after the infusion. I'll try to find that for you., 47, adult onset RA----- Original Message -----From: Gwen Orel <gwenorel@...>Date: Tuesday, March 18, 2008 9:49Subject: Re: Orencia"Rheumatoid Arthritis " <Rheumatoid Arthritis >> I think it has been about a year. It does work.> I also take mtx and pred, but I must say my RA is not very > active just now.> Interesting that you also feel tired! My doc had never > heard of that but it> def has that effect on me.> > > > > From: and Schulz <snooksmama@...>> Reply-"Rheumatoid Arthritis "> <Rheumatoid Arthritis >> Date: Tue, 18 Mar 2008 09:28:14 -0400> "Rheumatoid Arthritis "> <Rheumatoid Arthritis >> Subject: Re: Orencia> > > > > Thanks for responding, Gwen. I truly appreciate it!> How long have you been on it?> I also feel very tired after the infusion.> I hope it kicks in soon, I am sooooo miserable.> Are you also on methotrexate or prednisone??> Thanks so much> , 47, adult onset RA> > ----- Original Message -----> From: Gwen Orel <gwenorel@...>> Date: Tuesday, March 18, 2008 9:24> Subject: Re: Orencia> "Rheumatoid Arthritis "> <Rheumatoid Arthritis >> > > Hi sorry, I am on orencia but hve been very busy. I think> > it does work, but> > it takes a while to kick in. I always feel very tired> > after the infusion.> > > > Gwen,> > 42, onset age 14> > > > > > > > From: and Schulz <snooksmama@...>> > Reply-"Rheumatoid Arthritis "> > <Rheumatoid Arthritis >> > Date: Tue, 18 Mar 2008 09:05:25 -0400> > "Rheumatoid Arthritis "> > <Rheumatoid Arthritis >> > Subject: Re: Orencia> > > > > > > > > > Its really hard to believe that NO ONE on this list is on> > Orencia??? WOW> > , 47, adult onset RA> > > > ----- Original Message -----> > From: snooksmama@...> > Date: Friday, March 14, 2008 21:34> > Subject: Orencia> > Rheumatoid Arthritis > > > > > Is anyone here on Orencia? I'd like to get others' experiences;> > > I have been on it since early November and it hasn't started> > > working yet. Have heard it could take up to 6 months? It has> > > been absolutely ROTTEN waiting for it to kick in.> > > , 47, adult onset RA> > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 Yes, I think it works-- I'm sure I would feel if it does not. I also have osteoporosis/penia and am on 2 mg of prednisone. Sorry I can't say more-- I am at work. but just wanted to let you know I feel basically the same as I did on enbrel, maybe enbrel was a little better, hard to tell. -------------- Original message -------------- From: and Schulz <snooksmama@...> GwenIt does work? THat is certainly great to hear. Do you get infusions every month?I was hoping to get off of the prednisone...I already have osteopenia and have had to be on and off pred for over a year. I work full time and without the pred I can't function...but very worried about the bone loss. I thought I read in the Orencia info that some patients reported fatigue after the infusion. I'll try to find that for you., 47, adult onset RA----- Original Message -----From: Gwen Orel <gwenorelcomcast (DOT) net>Date: Tuesday, March 18, 2008 9:49Subject: Re: Orencia"Rheumatoid Arthritis " <Rheumatoid Arthritis >> I think it has been about a year. It does work.> I also take mtx and pred, but I must say my RA is not very > active just now.> Interesting that you also feel tired! My doc had never > heard of that but it> def has that effect on me.> > > > > From: and Schulz <snooksmamainsightbb>> Reply-"Rheumatoid Arthritis "> <Rheumatoid Arthritis > gt; Date: Tue, 18 Mar 2008 09:28:14 -0400> "Rheumatoid Arthritis "> <Rheumatoid Arthritis >> Subject: Re: Orencia> > > > > Thanks for responding, Gwen. I truly appreciate it!> How long have you been on it?> I also feel very tired after the infusion.> I hope it kicks in soon, I am sooooo miserable.> Are you also on methotrexate or prednisone??> Thanks so much> , 47, adult onset RA> > ----- Original Message -----> From: Gwen Orel <gwenorelcomcast (DOT) net>> Date: Tuesday, March 18, 2008 9:24> Subject: Re: Orencia> "Rheumatoid Arthritis "> <Rheumatoid Arthritis >> > > Hi sorry, I am on orencia but hve been very busy. nbsp; I think> > it does work, but> > it takes a while to kick in. I always feel very tired> > after the infusion.> > > > Gwen,> > 42, onset age 14> > > > > > > > From: and Schulz <snooksmamainsightbb>> > Reply-"Rheumatoid Arthritis "> > <Rheumatoid Arthritis >> > Date: Tue, 18 Mar 2008 09:05:25 -0400> > "Rheumatoid Arthritis "> > <Rheumatoid Arthritis >> > Subject: Re: Orencia> > > > > > > > > > Its really hard to believe that NO ONE on this list is on> > Orencia??? WOW> > , 47, adult onset RA> > > > ----- Original Message -----> > From: snooksmamainsightbb> > Date: Friday, March 14, 2008 21:34> > Subject: Orencia> > Rheumatoid Arthritis > > > > > Is anyone here on Orencia? I'd like to get others' experiences;> > > I have been on it since early November and it hasn't started> > > working yet. Have heard it could take up to 6 months? It has> > > been absolutely ROTTEN waiting for it to kick in.> > > , 47, adult onset RA> > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 Do you get contiuous relief? Mine only lasts about 2-1/2 weeks. And, today I think that they ran it in too fast and I got a horrible migraine...does this ever happen to you? on Orencia for one year ----- Original Message -----From: Gwen <gwenorel@...>Date: Friday, February 6, 2009 22:21Subject: Re: Limping along"Rheumatoid Arthritis " <Rheumatoid Arthritis >> I've been on orencia for a few years with no side effects. > It seems > to be working fine.> > Sent from my iPhone> > On Feb 6, 2009, at 9:13 PM, Elliott > <tobytoby99350@...> > wrote:> > > Orencia did not work at all for me, exept side effects > also > > affecting my lungs, where i had to go to the hospital , > haing > > pneumonia. Hope you will have luck with it .> > wishing you the best .> > Marika> >> > From: <karenbeyke@...>> > Rheumatoid Arthritis > > Sent: Friday, February 6, 2009 2:06:04 PM> > Subject: RE: RE: Limping along> >> > Rituxan only lasted about 2.5 months for me (and they said 4-> 6 > > months). So I’m about to try Orencia.> >> >> >> > > >> >> >> > From: rheumatoid_arthriti sgroups (DOT) com [mailto: > > rheumatoid_arthriti sgroups (DOT) com ] On Behalf Of > and > > Schulz> > Sent: Friday, February 06, 2009 5:40 AM> > rheumatoid_arthriti sgroups (DOT) com> > Subject: Re: RE: [rheumatoid_ arthritis] Limping along> >> >> >> > I think that statistically, Rituxan usually does work. Its > just that > > some people have a bad reaction like I did and can't complete > their > > first infusion.> >> > I wish you good luck and hope that it is your miracle!!!!> > , adult onset RA, mom to Rob, juvenile arthritis> >> > ----- Original Message -----> > From: roger pitcher <smartdog_8hotmail (DOT) com>> > Date: Friday, February 6, 2009 4:17> > Subject: RE: [rheumatoid_ arthritis] Limping along> > rheumatoid_arthriti sgroups (DOT) com> >> > >> > > as long as i'm limping i think i will consider myself lucky!> > > Seem to hve been in a constant state of flare up so just getting> > > up is the problem. Me like a lot of u just like to read and> > > probably don't contribute enough. Thanks for the replies about> > > rituximab will hve to try and hope that i am 1 of the lucky ones> > > it works on.> > >> > > rheumatoid_arthriti sgroups (DOT) com From:> > > angie_phea (DOT) comDate: Thu, 5 Feb 2009 19:59:57 -0800Subject:> > > Re: [rheumatoid_ arthritis] Limping along> > >> > >> > >> > >> > >> > >> > >> > > Hello I,m Angie from Texas thanks for sharing. I was first> > > diagnosed when I was just a teen it started in my right> > > foot,know it is also in my left hip and my left thumb.I,m still> > > trying to get disability but they won,t even look at my case> > > because I,m still working full-time. Any suggestions.> > > angie_phea (DOT) com> > > From: Forsythe Curran <DJ_Currancomcast (DOT) net>Subject:> > > Re: [rheumatoid_ arthritis] Limping along"rheumatoid> > > arthritis" < rheumatoid_arthriti sgroups (DOT) com >Date:> > > Thursday, February 5, 2009, 3:35 PM> > >> > >> > >> > >> > > ME TOO!> > > I have had a tremendous amount of pain in the last month.> > > Here in Colorado the weather changes from summer to winter and> > > then back again all in one week's time. I find that the> > > low pressure systems seem to create more stiffness and pain with> > > or without pain meds. ----- Original Message -----From:> > > "hlflatau" <hlflatau (DOT) com>"rheumatoid arthritis"> > > <rheumatoid_arthriti sgroups (DOT) com>Sent: Thursday,> > > February 5, 2009 12:51:42 PM GMT -07:00 US/Canada> > > MountainSubject: [rheumatoid_ arthritis] Limping along> > >> > >> > >> > > We may be limping along, but there are probably many of us like> > > me,who are simply reading and not contributing. Don't count us> > > out, justask for more input/challenges. You know how we get about> > > taking on new things....hBy the way, are there an inordinate> > > number of people who have a postholiday flare? This was my> > > first, but seem to hear about a lot of others.> > >> > >> > >> > >> > >> > >> > >> > > ____________ _________ _________ _________ _________ > _________ > > ________> > > Time for a change? SEEK and you shall find.> > > http://a.ninemsn. com.au/b. aspx?URL= http%3A%2F% > 2Fmsn%2Eseek% > > 2Eco%2Enz% 2FID%5FSEEKNZMAI N%5FUSR%2FPages% 2Falliance% > 5Fhomepage% > > 2Eascx%3FComeFro m%3Dmsnnz% 26tracking% 3Dsk%3Atl% > 3Asknz%3Amsnnz% > > 3A0%3Ahottag% 3Aflirt & _t=757263783 & _r=SEEKNZ_tagline & _m=EXT> >> >> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 My Ra is not that active right now, hard to tell whether it's the drugs or not but it does seem to last. No headaches but I do often feel fatigued after an infusion.Sent from my iPhoneOn Feb 6, 2009, at 10:54 PM, and Schulz <snooksmama@...> wrote: Do you get contiuous relief? Mine only lasts about 2-1/2 weeks. And, today I think that they ran it in too fast and I got a horrible migraine...does this ever happen to you? on Orencia for one year ----- Original Message -----From: Gwen <gwenorelcomcast (DOT) net>Date: Friday, February 6, 2009 22:21Subject: Re: Limping along"Rheumatoid Arthritis " <Rheumatoid Arthritis >> I've been on orencia for a few years with no side effects. > It seems > to be working fine.> > Sent from my iPhone> > On Feb 6, 2009, at 9:13 PM, Elliott > <tobytoby99350 > > wrote:> > > Orencia did not work at all for me, exept side effects > also > > affecting my lungs, where i had to go to the hospital , > haing > > pneumonia. Hope you will have luck with it .> > wishing you the best .> > Marika> >> > From: <karenbeykecomcast (DOT) net>> > Rheumatoid Arthritis > > Sent: Friday, February 6, 2009 2:06:04 PM> > Subject: RE: RE: Limping along> >> > Rituxan only lasted about 2.5 months for me (and they said 4-> 6 > > months). So I’m about to try Orencia.> >> >> >> > > >> >> >> > From: rheumatoid_arthriti sgroups (DOT) com [mailto: > > rheumatoid_arthriti sgroups (DOT) com ] On Behalf Of > and > > Schulz> > Sent: Friday, February 06, 2009 5:40 AM> > rheumatoid_arthriti sgroups (DOT) com> > Subject: Re: RE: [rheumatoid_ arthritis] Limping along> >> >> >> > I think that statistically, Rituxan usually does work. Its > just that > > some people have a bad reaction like I did and can't complete > their > > first infusion.> >> > I wish you good luck and hope that it is your miracle!!!!> > , adult onset RA, mom to Rob, juvenile arthritis> >> > ----- Original Message -----> > From: roger pitcher <smartdog_8hotmail (DOT) com>> > Date: Friday, February 6, 2009 4:17> > Subject: RE: [rheumatoid_ arthritis] Limping along> > rheumatoid_arthriti sgroups (DOT) com> >> > >> > > as long as i'm limping i think i will consider myself lucky!> > > Seem to hve been in a constant state of flare up so just getting> > > up is the problem. Me like a lot of u just like to read and> > > probably don't contribute enough. Thanks for the replies about> > > rituximab will hve to try and hope that i am 1 of the lucky ones> > > it works on.> > >> > > rheumatoid_arthriti sgroups (DOT) com From:> > > angie_phea (DOT) comDate: Thu, 5 Feb 2009 19:59:57 -0800Subject:> > > Re: [rheumatoid_ arthritis] Limping along> > >> > >> > >> > >> > >> > >> > >> > > Hello I,m Angie from Texas thanks for sharing. I was first> > > diagnosed when I was just a teen it started in my right> > > foot,know it is also in my left hip and my left thumb.I,m still> > > trying to get disability but they won,t even look at my case> > > because I,m still working full-time. Any suggestions.> > > angie_phea (DOT) com> > > From: Forsythe Curran <DJ_Currancomcast (DOT) net>Subject:> > > Re: [rheumatoid_ arthritis] Limping along"rheumatoid> > > arthritis" < rheumatoid_arthriti sgroups (DOT) com >Date:> > > Thursday, February 5, 2009, 3:35 PM> > >> > >> > >> > >> > > ME TOO!> > > I have had a tremendous amount of pain in the last month.> > > Here in Colorado the weather changes from summer to winter and> > > then back again all in one week's time. I find that the> > > low pressure systems seem to create more stiffness and pain with> > > or without pain meds. ----- Original Message -----From:> > > "hlflatau" <hlflatau (DOT) com>"rheumatoid arthritis"> > > <rheumatoid_arthriti sgroups (DOT) com>Sent: Thursday,> > > February 5, 2009 12:51:42 PM GMT -07:00 US/Canada> > > MountainSubject: [rheumatoid_ arthritis] Limping along> > >> > >> > >> > > We may be limping along, but there are probably many of us like> > > me,who are simply reading and not contributing. Don't count us> > > out, justask for more input/challenges. You know how we get about> > > taking on new things....hBy the way, are there an inordinate> > > number of people who have a postholiday flare? This was my> > > first, but seem to hear about a lot of others.> > >> > >> > >> > >> > >> > >> > >> > > ____________ _________ _________ _________ _________ > _________ > > ________> > > Time for a change? SEEK and you shall find.> > > http://a.ninemsn. com.au/b. aspx?URL= http%3A%2F% > 2Fmsn%2Eseek% > > 2Eco%2Enz% 2FID%5FSEEKNZMAI N%5FUSR%2FPages% 2Falliance% > 5Fhomepage% > > 2Eascx%3FComeFro m%3Dmsnnz% 26tracking% 3Dsk%3Atl% > 3Asknz%3Amsnnz% > > 3A0%3Ahottag% 3Aflirt & _t=757263783 & _r=SEEKNZ_tagline & _m=EXT> >> >> > > Quote Link to comment Share on other sites More sharing options...
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