Guest guest Posted March 18, 2000 Report Share Posted March 18, 2000 June, You may have been struck with this disease later in life than some of us, but your pain is still the same. Sorry you have been hurting so much. I'm glad you're going to ask about the prosorba. I hope you enjoyed your time with . a ----- Original Message ----- From: JUNE DIXON <juner24@...> < onelist> Sent: Thursday, March 16, 2000 1:48 PM Subject: [ ] prosorba > From: JUNE DIXON <juner24@...> > > a,I have been very interested in all the comments and articles on > the prosorba treatment. I recall Dr. Keystone discussing this at a forum > several months ago. The idea of this does not bother me but I am leery > of trying it. I plan on asking my rheumy about it next visit. I feel > badly complaining about pain when you are all so young and suffering > much more than myself but some days I just can't tolerate the pain. I > really was counting on the Celebrix to be a miracle but alas,the past 2 > weeks my left knee and hip have made it difficult to walk. > The upside to my life is that is here for a few days. > Hugs to everyone > June > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2000 Report Share Posted March 24, 2000 , I know someone from asa who has completed all 12 infusions (or whatever they are called) of prosorba. I'm sure she will share with you her experience. Her name is Tina (aka krissyjo). She has posted her experience on alt support arthritis (hope it's OK I mention that site here). Her email address is krissyjo@.... There was also another lady who had started on it from ASA but she had problems and had to stop after about the 3rd or 4th time. Good luck. Tery Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2000 Report Share Posted March 25, 2000 Tery and all, Anything that helps us get information and feedback is ok here, except of course those for profit. ASA is a great place to get feedback about different drug treatments. There are hundreds of subscribers, many that have tried it all. http://www.deja.com/usenet/ is the link to the public discussion groups. a ----- Original Message ----- From: <tjones500@...> < onelist> Sent: Friday, March 24, 2000 5:51 PM Subject: Re: [ ] Prosorba > From: tjones500@... > > , > I know someone from asa who has completed all 12 infusions (or whatever they > are called) of prosorba. I'm sure she will share with you her experience. > Her name is Tina (aka krissyjo). She has posted her experience on alt > support arthritis (hope it's OK I mention that site here). Her email address > is krissyjo@.... There was also another lady who had started on it from > ASA but she had problems and had to stop after about the 3rd or 4th time. > Good luck. Tery > > ------------------------------------------------------------------------ > PERFORM CPR ON YOUR APR! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > 1/2121/4/_/478567/_/953938325/ > ------------------------------------------------------------------------ > > URL to change your membership options: /group/ > RA-support website: http://www.rasupport.webprovider.com/ > Our chat room: www.delphi.com/RheumatoidArth1/start > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2000 Report Share Posted March 25, 2000 , If you use the link a gave and put prosorba in the search box, they will give you all the posts on that topic. I just looked them over and they are interesting. Pat At 07:05 PM 03/24/2000 -0500, you wrote: >From: " a " <aA@...> > >Tery and all, > >Anything that helps us get information and feedback is ok here, except of >course those for profit. ASA is a great place to get feedback about >different drug treatments. There are hundreds of subscribers, many that >have tried it all. http://www.deja.com/usenet/ is the link to the public >discussion groups. > >a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2000 Report Share Posted March 25, 2000 Tery, Thanks for recommending this. I had not thought of it and they do have good info. Pat At 05:51 PM 03/24/2000 -0500, you wrote: >From: tjones500@... > >, >I know someone from asa who has completed all 12 infusions (or whatever they >are called) of prosorba. I'm sure she will share with you her experience. >Her name is Tina (aka krissyjo). She has posted her experience on alt >support arthritis (hope it's OK I mention that site here). Her email address >is krissyjo@.... There was also another lady who had started on it from >ASA but she had problems and had to stop after about the 3rd or 4th time. >Good luck. Tery > >------------------------------------------------------------------------ >PERFORM CPR ON YOUR APR! >Get a NextCard Visa, in 30 seconds! Get rates as low as >0.0% Intro or 9.9% Fixed APR and no hidden fees. >Apply NOW! >1/2121/4/_/478567/_/953938325/ >------------------------------------------------------------------------ > >URL to change your membership options: /group/ >RA-support website: http://www.rasupport.webprovider.com/ >Our chat room: www.delphi.com/RheumatoidArth1/start Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2000 Report Share Posted March 27, 2000 Last March, one year ago, I was very excited about the Prosorba Column. I did a lot of research on it and even found out where the dialysis machines are located in Key West and that the attachments to the machines for RA use have to be ordered by the case. I checked the price for a case and figured that I'd just order the whole case for myself. I wanted to be the first person in Key West to try this new procedure. Then, I had my appointment with my RA specialist. She would not prescribe it for me and said that it was a last resort only. I would have to try out every other medicine out on the market for RA first before it could be prescribed for me. I'm certain that no in the lower keys has used this procedure yet because the only RA specialist in this area WILL NOT prescribe it. Good luck to the person trying to get it. Let me know if you can find a doctor that will prescribe it and how it works. It appears to me that with the internet, we get more information than the doctors get. In my opinion, most doctors are so busy seeing patients that they don't take the time to get information on the newest things out there. My doctor had never heard of Prosorba and I had to send her all the info on it and then she still wouldn't prescribe it. Maybe it's because I live in a rural area...maybe larger cities have doctors that are more willing to try new techniques. Delaine Key West Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2000 Report Share Posted March 29, 2000 Hi , When Esther was about ten years old the doctors at Children's Hospital in Phila. wanted us to do a procedure that sounds like Prosorba. Isn't that when they filter the blood somewhat like dialysis? She never responded to any of the arthritis medications except for Prednisone. At that time this was really new and we were afraid of it. Sometimes I wonder if maybe we should have gone through with it. But at that time, we felt they were going to use her as a guinea pig. That was 20 years ago. ~ Carol ~ ----- Original Message ----- From: Valued Compaq Customer <ruf-caimi@...> < onelist> Sent: Monday, March 27, 2000 7:45 AM Subject: [ ] Prosorba > From: " Valued Compaq Customer " <ruf-caimi@...> > > Delaine, > Your doctor probably didn't know about Prosorba because it was just > approved a short time ago for Ra, patients. It has been aroud for a while > for other diseases. It's true it is used when everything else has failed. > I have tried almost every drug and either it did nothing or I am allergic > to it. I was allergic to the Gold, plus it did structural damage to my > kidneys. I am allergic to celebrex. Enbrel and Remicade are not options > for me at this time, I have a problem with infections. I take 13 drugs a > day, some for the RA, are vioxx, pred, mtrx, folic acid, fosamax, still I > need 2 to 4 tylenol arthritis a day. > I am afraid to do this, but I'm thinking I don't have much choice. I will > know better in two weeks, I keep researching it though. Any information > you have would be appreciated. There are problems with procedure that may > make it impossible for me to take. I have terrible veins, I am also severe > anemic, and have hypertension. You can not be on an Ace Inhibator, and I > am. I would have to stop taking it 72 hours before each procedure. I know > my family doctor will not like that. Insurance companies are paying for > the whole thing, it cost per procedure 15,000 to 18,000 and there are 12 > procedures. It is very expensive, however, unlike enbrel insurance > companies pay everything. > If you want more information on it, I have a lot. > > > ------------------------------------------------------------------------ > DON'T HATE YOUR RATE! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > 1/2120/4/_/478567/_/954161078/ > ------------------------------------------------------------------------ > > URL to change your membership options: /group/ > RA-support website: http://www.rasupport.webprovider.com/ > Our chat room: www.delphi.com/RheumatoidArth1/start > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2000 Report Share Posted March 30, 2000 Esther, Things were much different 20 years ago. I probably would have done the same thing. I'm sure you made the right decision. a ----- Original Message ----- From: " Esther & Carol " <cheerios2@...> < onelist> Sent: Tuesday, March 28, 2000 11:26 PM Subject: Re: [ ] Prosorba > From: " Esther & Carol " <cheerios2@...> > > Hi , > > When Esther was about ten years old the doctors at Children's Hospital > in Phila. > wanted us to do a procedure that sounds like Prosorba. Isn't that when they > filter > the blood somewhat like dialysis? She never responded to any of the > arthritis > medications except for Prednisone. At that time this was really new and we > were afraid of it. Sometimes I wonder if maybe we should have gone through > with it. But at that time, we felt they were going to use her as a guinea > pig. That > was 20 years ago. > > ~ Carol ~ > > > ----- Original Message ----- > From: Valued Compaq Customer <ruf-caimi@...> > < onelist> > Sent: Monday, March 27, 2000 7:45 AM > Subject: [ ] Prosorba > > > > From: " Valued Compaq Customer " <ruf-caimi@...> > > > > Delaine, > > Your doctor probably didn't know about Prosorba because it was just > > approved a short time ago for Ra, patients. It has been aroud for a while > > for other diseases. It's true it is used when everything else has failed. > > I have tried almost every drug and either it did nothing or I am allergic > > to it. I was allergic to the Gold, plus it did structural damage to my > > kidneys. I am allergic to celebrex. Enbrel and Remicade are not options > > for me at this time, I have a problem with infections. I take 13 drugs a > > day, some for the RA, are vioxx, pred, mtrx, folic acid, fosamax, still I > > need 2 to 4 tylenol arthritis a day. > > I am afraid to do this, but I'm thinking I don't have much choice. I will > > know better in two weeks, I keep researching it though. Any information > > you have would be appreciated. There are problems with procedure that may > > make it impossible for me to take. I have terrible veins, I am also > severe > > anemic, and have hypertension. You can not be on an Ace Inhibator, and I > > am. I would have to stop taking it 72 hours before each procedure. I > know > > my family doctor will not like that. Insurance companies are paying for > > the whole thing, it cost per procedure 15,000 to 18,000 and there are 12 > > procedures. It is very expensive, however, unlike enbrel insurance > > companies pay everything. > > If you want more information on it, I have a lot. > > > > > > ------------------------------------------------------------------------ > > DON'T HATE YOUR RATE! > > Get a NextCard Visa, in 30 seconds! Get rates as low as > > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > > Apply NOW! > > 1/2120/4/_/478567/_/954161078/ > > ------------------------------------------------------------------------ > > > > URL to change your membership options: > /group/ > > RA-support website: http://www.rasupport.webprovider.com/ > > Our chat room: www.delphi.com/RheumatoidArth1/start > > > > > > > ------------------------------------------------------------------------ > PERFORM CPR ON YOUR APR! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > 1/2121/4/_/478567/_/954304074/ > ------------------------------------------------------------------------ > > URL to change your membership options: /group/ > RA-support website: http://www.rasupport.webprovider.com/ > Our chat room: www.delphi.com/RheumatoidArth1/start > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2000 Report Share Posted March 31, 2000 Hi , I am feeling okay. A home therapist started on Tuesday named Mike. He explained to me that with arthritis joint pain the treatment is to rest the joint but with this Fibro pain and resting, the pain is increased. The Fibro pain is hurting me so. My body feels like it is in knotts. The doctor started me on Zoloft 50 mg. for the Fibro. According to the info from the drug store, it may take 2 weeks for it to begin to work. Believe it or not, I have actually liked going prone (lying on stomach) now. Mom bought me a wedge pillow and it is so much more comfortable. I still have to rotate side to side every two hours. Feels really good getting off my shoulders. I sit up in my wheelchair about 10 mins. a day so far. And the Urologists wants me to sit on the " throne " every 4 hours to try to work my bladder. I did finally go one night before bed......but, I didn't even realize I had went. Mom still has to cath me every 5-6 hours. They are going to schedule the Uro-dynamic test soon. Tomorrow I am actually looking forward to the doctor's visit to see the surgeon...........OUT OF THE HOUSE.....yippeee! I have to go by ambulance though because I can't sit in my wheelchair or the car. I am suppose to be getting the stitches out tomorrow. He may also increase my sitting up time in wheelchair. Mom says the surgery site looks really good . Thanks for asking. Hope that your hip pain eases! I can remember that pain very well. ~ Esther ~ ----- Original Message ----- From: Valued Compaq Customer <ruf-caimi@...> < onelist> Sent: Wednesday, March 29, 2000 6:40 AM Subject: [ ] Prosorba > From: " Valued Compaq Customer " <ruf-caimi@...> > > Hi Carol & Esther, > What you wrote about does sound like Prosorba, and maybe she would have > been a guinea pig. I am not sure how long it has been around, I thought > only a short time. So maybe 20 years ago they were experimenting with it. > It was used for something else, but I forget what it was. I think you were > wise to be afraid of it, I am. I am not sure what I will do. > Esther how are you feeling? Much better I hope and happy to be in your > own home. > > > ------------------------------------------------------------------------ > Good friends, school spirit, hair-dos you'd like to forget. > Classmates.com has them all. And with 4.4 million alumni already > registered, there's a good chance you'll find your friends here: > 1/2623/4/_/478567/_/954329999/ > ------------------------------------------------------------------------ > > URL to change your membership options: /group/ > RA-support website: http://www.rasupport.webprovider.com/ > Our chat room: www.delphi.com/RheumatoidArth1/start > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2000 Report Share Posted April 6, 2000 , Yes, I would like as much info as possible, right now I have been taken off everything and am beginning to flare. I want some info to bring to my MD. My HMO might not go for it but I can't even think of what my life will be like shortly. Barb -----Original Message----- From: Valued Compaq Customer <ruf-caimi@...> onelist < onelist> Date: Wednesday, April 05, 2000 6:50 PM Subject: [ ] Prosorba >Hi Barb, > I can tell you, it is like dialysis. It will use up your veins. You can >not be anemic or be on ace inhibitors. Your blood pressure can not be high >either. I am looking into trying it. I have heard from a woman who had it >done. She said it was rough because you are so tired afterwards but she >felt a little better and would do it again. I will know more maybe in a >few days, if you want some web sites I can give them to you. > > >------------------------------------------------------------------------ >GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9% >Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! >1/936/4/_/478567/_/954985796/ >------------------------------------------------------------------------ > >URL to change your membership options: /group/ >RA-support website: http://www.rasupport.webprovider.com/ >Our chat room: www.delphi.com/RheumatoidArth1/start > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2000 Report Share Posted April 6, 2000 Welcome Barb, I'm currently on Arava and Enbrel. I will be trying Remicade next (if my insurance approves). I've had no problems with Arava and my liver. All test are always normal. However, it hasn't done a thing for me. This is a great group of ladies here, lots of info and the support there is! Tery Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2000 Report Share Posted April 7, 2000 Thanks all for the welcome. I was telling my very supportive husband last night that I have found a great group to corespond with. At least for now, my hands are already starting to swell and stiffen up. My Doc said he might be able to give me cortisone shots. I think that would be better right now instead of high dosing of prednisone. Btw, prednisone really bothers my bladder, it's hard to get a flow going. Anyone else experience this? Also, my labs are back, my liver count has IMPROVED!!! Thank you Lord!! It's not normal yet, but 2x higher is much better then 4!! I will do blood tests every week until normal and then probably start on enbrel or remicade. We'll see. Thanks for all of the support! Barbara -----Original Message----- From: tjones500@... <tjones500@...> egroups < egroups> Date: Thursday, April 06, 2000 9:18 AM Subject: Re: [ ] Prosorba >Welcome Barb, >I'm currently on Arava and Enbrel. I will be trying Remicade next (if my >insurance approves). I've had no problems with Arava and my liver. All test >are always normal. However, it hasn't done a thing for me. This is a great >group of ladies here, lots of info and the support there is! Tery > >------------------------------------------------------------------------ >LOW RATE, NO WAIT! >Get a NextCard Visa, in 30 seconds! Get rates >as low as 2.9% Intro or 9.9% Fixed APR and no hidden fees. >Apply NOW! >1/2122/4/_/478567/_/955037895/ >------------------------------------------------------------------------ > >URL to change your membership options: /group/ >RA-support website: http://www.rasupport.webprovider.com/ >Our chat room: www.delphi.com/RheumatoidArth1/start > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2000 Report Share Posted April 7, 2000 Barbara, I get Kenalog shots (pretty much monthly). It is prednisone just injected in the arm or bottom instead of a certain joint. Sometimes it really helps, others like this month nada. Tery Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2000 Report Share Posted April 7, 2000 Glad to see that your liver count improved, Barb. Sorry about your hands. Keep up posted. ----- Original Message ----- From: " Kendall " <bbkendall@...> < egroups> Sent: Thursday, April 06, 2000 8:14 PM Subject: Re: [ ] Prosorba > Thanks all for the welcome. I was telling my very supportive husband last > night that I have found a great group to corespond with. At least for now, > my hands are already starting to swell and stiffen up. My Doc said he might > be able to give me cortisone shots. I think that would be better right now > instead of high dosing of prednisone. Btw, prednisone really bothers my > bladder, it's hard to get a flow going. Anyone else experience this? Also, > my labs are back, my liver count has IMPROVED!!! Thank you Lord!! It's not > normal yet, but 2x higher is much better then 4!! I will do blood tests > every week until normal and then probably start on enbrel or remicade. We'll > see. Thanks for all of the support! > Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2000 Report Share Posted April 13, 2000 , So sorry that Prosorba is not the treatment for you. But it is great that you found out before starting the treatment. Sure hope they come up with a good battle plan for ya! ~ Esther & Carol ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2000 Report Share Posted April 13, 2000 Hi, Well I saw my MD today and he said that prosorba is not approved by my HMO yet, but that there was a meeting planned next week to discuss it and get more info. He didn't think that it would be a good choice for me though. He thinks the MTX+enbrel combo will be better. Still can't do either until liver is normal, willl possibly need a biopsy. Anyone out there ever had one? I got a cortisone shot in my left pointer knuckle today. I find it soo interesting to see the different meds we are all on, and learn so much from this forum that I know if I'm to do enbrel that I'll have 1st hand experience right at my finger tips!!!! Thanks!!!! Esther, I don't know if this is of any help to you or not, but everytime I take prednisone I have trouble going to the bathroom. I have the urge just can't seem to get it out, so now I take Peridium (SP?)(it turns urine orange) it helps to relax the little muscles around the uretha. Seems to do the trick. Beverly, I don't know you but wanted you to know that I'm glad you're home. I have had 16 surgeries and hate being in the hospital. I firmly believe in the healing power of my own bed!!! Happy Thursday to all, one more day until spring break here. YIPPEEEE, time to catch up on some sleep! Bye for now, Barbara -----Original Message----- From: Valued Compaq Customer <ruf-caimi@...> onelist < onelist> Date: Wednesday, April 05, 2000 7:05 PM Subject: [ ] Prosorba >Hi Barb, > Okay here is some stuff, > 1. The company that makes it is called Cypress call them at >1-800-635-4673 > www.cypressbio.com > 2. www.pslgroup.com/dg/18d44e.htm > Prosorba Column Approved In Canada For Symptons Of Rheumatoid Arthritis > 3. http://arthritis.about.com type in Prosorba > >a, sent a few of these in and I just went and looked. about.com is >good information. I would suggest calling the company. They send you a >lot of information. If I can be of help let me know. >Good Luck, > > >------------------------------------------------------------------------ >Get a NextCard Visa, in 30 seconds! >1. Fill in the brief application >2. Receive approval decision within 30 seconds >3. Get rates as low as 2.9% Intro or 9.9% Fixed APR >Apply NOW! >1/975/4/_/478567/_/954986750/ >------------------------------------------------------------------------ > >URL to change your membership options: /group/ >RA-support website: http://www.rasupport.webprovider.com/ >Our chat room: www.delphi.com/RheumatoidArth1/start > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2000 Report Share Posted April 13, 2000 Barbara, Enbrel does not affect the liver like MTX does. We have many people here that have had fantastic results from Enbrel. How long have you been off the MTX? Were you taking it orally or injections? I hope your liver count continues to decline. Do you know if Enbrel is approved by your HMO? You're right, there is a lot of first hand experience here with Enbrel. It's helped me more than any med I've been on in my 25 year battle with this disease. a ----- Original Message ----- From: " Kendall " <bbkendall@...> < egroups> Sent: Wednesday, April 12, 2000 11:42 PM Subject: Re: [ ] Prosorba > Hi, > Well I saw my MD today and he said that prosorba is not approved by my HMO > yet, but that there was a meeting planned next week to discuss it and get > more info. He didn't think that it would be a good choice for me though. He > thinks the MTX+enbrel combo will be better. Still can't do either until > liver is normal, willl possibly need a biopsy. Anyone out there ever had > one? I got a cortisone shot in my left pointer knuckle today. I find it soo > interesting to see the different meds we are all on, and learn so much from > this forum that I know if I'm to do enbrel that I'll have 1st hand > experience right at my finger tips!!!! Thanks!!!! > > Esther, I don't know if this is of any help to you or not, but everytime I > take prednisone I have trouble going to the bathroom. I have the urge just > can't seem to get it out, so now I take Peridium (SP?)(it turns urine > orange) it helps to relax the little muscles around the uretha. Seems to do > the trick. > > Beverly, I don't know you but wanted you to know that I'm glad you're home. > I have had 16 surgeries and hate being in the hospital. I firmly believe in > the healing power of my own bed!!! > > Happy Thursday to all, one more day until spring break here. YIPPEEEE, time > to catch up on some sleep! > > Bye for now, > Barbara > -----Original Message----- > From: Valued Compaq Customer <ruf-caimi@...> > onelist < onelist> > Date: Wednesday, April 05, 2000 7:05 PM > Subject: [ ] Prosorba > > > >Hi Barb, > > Okay here is some stuff, > > 1. The company that makes it is called Cypress call them at > >1-800-635-4673 > > www.cypressbio.com > > 2. www.pslgroup.com/dg/18d44e.htm > > Prosorba Column Approved In Canada For Symptons Of Rheumatoid Arthritis > > 3. http://arthritis.about.com type in Prosorba > > > >a, sent a few of these in and I just went and looked. about.com is > >good information. I would suggest calling the company. They send you a > >lot of information. If I can be of help let me know. > >Good Luck, > > > > > >------------------------------------------------------------------------ > >Get a NextCard Visa, in 30 seconds! > >1. Fill in the brief application > >2. Receive approval decision within 30 seconds > >3. Get rates as low as 2.9% Intro or 9.9% Fixed APR > >Apply NOW! > >1/975/4/_/478567/_/954986750/ > >------------------------------------------------------------------------ > > > >URL to change your membership options: > /group/ > >RA-support website: http://www.rasupport.webprovider.com/ > >Our chat room: www.delphi.com/RheumatoidArth1/start > > > > > > > ------------------------------------------------------------------------ > 25% Off All Prints! > Buy one today at Corbis.com > 1/3357/4/_/478567/_/955597180/ > ------------------------------------------------------------------------ > > URL to change your membership options: /group/ > RA-support website: http://www.rasupport.webprovider.com/ > Our chat room: www.delphi.com/RheumatoidArth1/start > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2000 Report Share Posted April 15, 2000 a, I have been off the MTX for 6 weeks now. I was taking 15mg by injection once a week. How about you? Barb -----Original Message----- From: a <aA@...> egroups < egroups> Date: Thursday, April 13, 2000 8:05 AM Subject: Re: [ ] Prosorba >Barbara, > >Enbrel does not affect the liver like MTX does. We have many people here >that have had fantastic results from Enbrel. How long have you been off the >MTX? Were you taking it orally or injections? I hope your liver count >continues to decline. Do you know if Enbrel is approved by your HMO? >You're right, there is a lot of first hand experience here with Enbrel. >It's helped me more than any med I've been on in my 25 year battle with this >disease. > >a > > >----- Original Message ----- >From: " Kendall " <bbkendall@...> >< egroups> >Sent: Wednesday, April 12, 2000 11:42 PM >Subject: Re: [ ] Prosorba > > >> Hi, >> Well I saw my MD today and he said that prosorba is not approved by my HMO >> yet, but that there was a meeting planned next week to discuss it and get >> more info. He didn't think that it would be a good choice for me though. >He >> thinks the MTX+enbrel combo will be better. Still can't do either until >> liver is normal, willl possibly need a biopsy. Anyone out there ever had >> one? I got a cortisone shot in my left pointer knuckle today. I find it >soo >> interesting to see the different meds we are all on, and learn so much >from >> this forum that I know if I'm to do enbrel that I'll have 1st hand >> experience right at my finger tips!!!! Thanks!!!! >> >> Esther, I don't know if this is of any help to you or not, but everytime I >> take prednisone I have trouble going to the bathroom. I have the urge >just >> can't seem to get it out, so now I take Peridium (SP?)(it turns urine >> orange) it helps to relax the little muscles around the uretha. Seems to >do >> the trick. >> >> Beverly, I don't know you but wanted you to know that I'm glad you're >home. >> I have had 16 surgeries and hate being in the hospital. I firmly believe >in >> the healing power of my own bed!!! >> >> Happy Thursday to all, one more day until spring break here. YIPPEEEE, >time >> to catch up on some sleep! >> >> Bye for now, >> Barbara >> -----Original Message----- >> From: Valued Compaq Customer <ruf-caimi@...> >> onelist < onelist> >> Date: Wednesday, April 05, 2000 7:05 PM >> Subject: [ ] Prosorba >> >> >> >Hi Barb, >> > Okay here is some stuff, >> > 1. The company that makes it is called Cypress call them at >> >1-800-635-4673 >> > www.cypressbio.com >> > 2. www.pslgroup.com/dg/18d44e.htm >> > Prosorba Column Approved In Canada For Symptons Of Rheumatoid Arthritis >> > 3. http://arthritis.about.com type in Prosorba >> > >> >a, sent a few of these in and I just went and looked. about.com is >> >good information. I would suggest calling the company. They send you a >> >lot of information. If I can be of help let me know. >> >Good Luck, >> > >> > >> >------------------------------------------------------------------------ >> >Get a NextCard Visa, in 30 seconds! >> >1. Fill in the brief application >> >2. Receive approval decision within 30 seconds >> >3. Get rates as low as 2.9% Intro or 9.9% Fixed APR >> >Apply NOW! >> >1/975/4/_/478567/_/954986750/ >> >------------------------------------------------------------------------ >> > >> >URL to change your membership options: >> /group/ >> >RA-support website: http://www.rasupport.webprovider.com/ >> >Our chat room: www.delphi.com/RheumatoidArth1/start >> > >> > >> >> >> ------------------------------------------------------------------------ >> 25% Off All Prints! >> Buy one today at Corbis.com >> 1/3357/4/_/478567/_/955597180/ >> ------------------------------------------------------------------------ >> >> URL to change your membership options: >/group/ >> RA-support website: http://www.rasupport.webprovider.com/ >> Our chat room: www.delphi.com/RheumatoidArth1/start >> > > >------------------------------------------------------------------------ >Get paid for the stuff you know! >Get answers for the stuff you don’t. And get $10 to spend on the site! >1/2200/4/_/478567/_/955638334/ >------------------------------------------------------------------------ > >URL to change your membership options: /group/ >RA-support website: http://www.rasupport.webprovider.com/ >Our chat room: www.delphi.com/RheumatoidArth1/start > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2000 Report Share Posted April 15, 2000 Barb, I'm on Enbrel, but my doctor wants to add mtx injections. If my next sed rate is still high, I will go on mtx. I had tried it orally many years ago, but had severe gastric side effects. Hopefully the injections won't bother me. One of the best combinations for a lot of people is Enbrel and MTX. I had added MSM to my coctail, and it appeared to lower my sed rate. My doctor is waiting to see if it continues to keep my sed rate down, and if so I won't take the MTX. a ----- Original Message ----- From: " Kendall " <bbkendall@...> < egroups> Sent: Friday, April 14, 2000 9:13 PM Subject: Re: [ ] Prosorba > a, > I have been off the MTX for 6 weeks now. I was taking 15mg by injection once > a week. How about you? > Barb > -----Original Message----- > From: a <aA@...> > egroups < egroups> > Date: Thursday, April 13, 2000 8:05 AM > Subject: Re: [ ] Prosorba > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 <A HREF= " http://www.rheumatoid-arthritis-treatments.com/html/prosorba-therapy.php3 " \ >Prosorba: A New Therapy for Treating Rheumatoid Arthritis</A> My mother called me and said she heard about this drug for RA. Has anyone heard of this before? Janet Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2005 Report Share Posted April 11, 2005 Hi everyone- Just my two cents. I brought up the Prosorba column with my RD and he was not in favor of it. It means filtering blood and it can actually hasten the disease and make symptoms worse. I guess the RA, because of its complicated cell dysfuntion, is highly effected by an activity filtering the blood. Anyway, I am hoping they do some out with the newly researched drug NASA, NADA or something. I read a post on it. Wish Id saved it. Have a great day everyone, Deborah Quote Link to comment Share on other sites More sharing options...
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