Guest guest Posted January 25, 2002 Report Share Posted January 25, 2002 That's wonderful Maya! I'd sure like to be able to walk and feel good. Maybe I should suggest that next time I see the doc. I have Reiters' also and I live in California, too. Peggy MAYA APPUHN wrote: THANK YOU REMICADE!! I was scared to do it, but the Remicade has brought my pain level down completely. I am almost walking normally and painfree THREE DAYS LATER after the first infusion- just the muscles are weak. TRY IT TODAY - I no longer need the Morphine for breakthrough pain. And I can't wait to get off the Duragesic. I'm off the Methotrexate, too. The prayers worked. When I decided I no longer wanted to be sick or be a " victim " of circumstance, I got better. Strange coincidence. TRY REMICADE NOW. - With love, Maya in the City of Angels 31/female, Reactive Arthritis, HLA-B27 negativeGet more from the Web. FREE MSN Explorer download : http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2002 Report Share Posted January 25, 2002 Remicade has its place, but it also has some problems, so please be cautious. http://www.remicadealert.com/ Peggy Beaubien wrote: > That's wonderful Maya! I'd sure like to be able to walk and feel good. Maybe I should suggest that next time I see the doc. I have Reiters' also and I live in California, too. > Peggy > > MAYA APPUHN wrote: THANK YOU REMICADE!! I was scared to do it, but the Remicade has brought my pain level down completely. I am almost walking normally and painfree THREE DAYS LATER after the first infusion- just the muscles are weak. > > TRY IT TODAY - I no longer need the Morphine for breakthrough pain. And I can't wait to get off the Duragesic. I'm off the Methotrexate, too. > > The prayers worked. When I decided I no longer wanted to be sick or be a " victim " of circumstance, I got better. Strange coincidence. > > TRY REMICADE NOW. > > - > With love, > Maya in the City of Angels > 31/female, Reactive Arthritis, HLA-B27 negativeGet more from the Web. FREE MSN Explorer download : http://explorer.msn.com > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2002 Report Share Posted January 27, 2002 I wrote about my FULL REMISSION from Reiter's. there are some lawyers who are jumping at the bit to find something wrong with the treatment called REMICADE. I took the risk and prevailed - it would have been worse to continue on the Morphine/Prednisone/Methotrexate ferris wheel. I'm really unhappy with the response I received from the chronic pain group in general. Hello, I found a solution to my chronic pain problems so I guess I don't belong in the group anymore but I feel it is my duty to inform other arthritis patients of the miracle I have experienced. The risks were worth it (I don't have any recurring infections or heart problems) - 3 days later I was walking with no problem. I had more problems and side effects from Prednisone alone. Peggy wrote: " That's wonderful Maya! I'd sure like to be able to walk and feel good. Maybe I should suggest that next time I see the doc. I have Reiters' also and I live in California, too. Peggy " Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2002 Report Share Posted January 27, 2002 The risks were worth it (I don't have any recurring infections or heart problems) - 3 days later I was walking with no problem. I had more problems and side effects from Prednisone alone. > I do not like steroids, beyond the fact i had some temporary blood sugar problems they didn't touch the burning pain either.It also aggravated another medical condition I have. Plus I read that for back problems that steroids long term can do more harm than good, contributing to osteoporosis and even leaking out disc fluid, scary! Too much to have going on just for temporary relief, when there are other things out there that can help more and have less bad things accompanying them. I have found a new Neurologist as of Friday, an hour from my house- I had to go to the emergency room while visiting my friend to make sure I did not have a bladder infection I had really bad pain down in groin and it hurt when I urinated, no infection so it was just something with the L5/s1 area perhaps, that is what this doctor is going to determine. He seems nice. I am not sure if he'll help with the pain we'll see. He did give me soemthign to help sleep at night in the meantime an antidepressant that is supposed to help this way, I think it's an older tricyclic. I hope it doesn't make me put on weight, i struggle to keep mine down so that there's less pressure on my back. Well, I am still waiting to hear back from the dr. in upstate NY they are still hard to communicate with but i get the idea they may be able to help me more with this pain. The only thing that would stop me from going there would be if I could possibly find someone else who takes my insurance and who i can talk to on the phone which this doctor does not do, he charges when they do talk to you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2002 Report Share Posted January 27, 2002 maya, while I'm sure all of us are glad that you are in full remission.. it is understandable that concerns about it would be posted.. so that everyone with it doesnt go out and think it will automatically work for them... I'm very glad it helped you.. but I'm also glad that the other information about it was posted... I hope it continues to work for you. Serena --- MAYA APPUHN wrote: > I wrote about my FULL REMISSION from Reiter's. > there are some lawyers who are jumping at the > bit to find something wrong with the treatment > called REMICADE. I took the risk and prevailed > - it would have been worse to continue on the > Morphine/Prednisone/Methotrexate ferris wheel. > I'm really unhappy with the response I received > from the chronic pain group in general. > > Hello, I found a solution to my chronic pain > problems so I guess I don't belong in the group > anymore but I feel it is my duty to inform > other arthritis patients of the miracle I have > experienced. The risks were worth it (I don't > have any recurring infections or heart > problems) - 3 days later I was walking with no > problem. I had more problems and side effects > from Prednisone alone. > > Peggy wrote: > > " That's wonderful Maya! I'd sure like to be > able to walk and feel good. Maybe I should > suggest that next time I see the doc. I have > Reiters' also and I live in California, too. > Peggy " Get more from the Web. FREE MSN Explorer > download : http://explorer.msn.com > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2002 Report Share Posted January 28, 2002 Maya, I don¹t think anyone¹s knocking your results on Remicade. It¹s just that there are some reports emerging that Remicade may be dangerous for some people, and those reports are coming from the company that makes Remicade, and the FDA. So far it appears that 7 out of 101 people in a study have died as a direct result of Remicade, which is alarming, and an incredibly high number of mortalities. This is from the FDA¹s home page at http://www.fda.gov/cber/safety/safety.htm: > Remicade (Infliximab) - Centocor - Clinical Alert: Congestive Heart Failure > Centocor, in consultation with FDA, is alerting physicians to potential > serious adverse effects of REMICADE in patients with CHF. Preliminary results > of an ongoing phase 2 trial in patients with moderate to severe CHF > demonstrated higher incidences of mortality and hospitalization for worsening > heart failure in patients treated with REMICADE, especially those treated with > the higher dose of 10 mg/kg. Based on these preliminary findings, and pending > additional data, precautionary measures were recommended in a " Dear Healthcare > Professional " letter. - MedWatch - October 18, 2001 > > Remicade (Infliximab) - Centocor -Black Box Warning FDA notifies health > professionals that tuberculosis and other serious opportunistic infections, > including histoplasmosis, listeriosis, and pneumocystosis, have been reported > in both the clinical research and post-marking surveillance settings. Some of > these infections have been fatal. Centocor has added a BOXED WARNING to the > labeling for the product, and the WARNINGS and ADVERSE REACTIONS sections of > the product labeling were revised. - MedWatch - October 5, 2001 For more information, I¹d suggest the link that was posted before, http://www.remicadealert.com/ . That page is a consumer advocacy group page, but it also has links to the Remicade homepage as well as the FDA. -- Robbie in FL, co-moderator chronic_pain. AS/ReA 18 + years, and still going... feralelf@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2002 Report Share Posted January 28, 2002 Maya I am sorry that you got some negative feedback here. That is a shame. I think people should feel happy for you. You did say remission--not cured. What works for some will not work for others. And, side-effects are different also. You have to weigh the risks and then do what you have to do. No one lives in our body except ourselves, so they don't know what our circumstances are exactly. I also don't think you should leave this group. we all need support whether we're hurting or not. I hope you continue to post and can be of help to others. You hang in there and don't get discouraged. Even if you did get negative vibes, there are many of us who feel good for you. Take care. Peggy MAYA APPUHN wrote: I wrote about my FULL REMISSION from Reiter's. there are some lawyers who are jumping at the bit to find something wrong with the treatment called REMICADE. I took the risk and prevailed - it would have been worse to continue on the Morphine/Prednisone/Methotrexate ferris wheel. I'm really unhappy with the response I received from the chronic pain group in general. Hello, I found a solution to my chronic pain problems so I guess I don't belong in the group anymore but I feel it is my duty to inform other arthritis patients of the miracle I have experienced. The risks were worth it (I don't have any recurring infections or heart problems) - 3 days later I was walking with no problem. I had more problems and side effects from Prednisone alone. Peggy wrote: " That's wonderful Maya! Today is the first day of the rest of my life....... --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2002 Report Share Posted January 29, 2002 Robbie wrote; " It¹s just that there are some reports emerging that Remicade may be dangerous for some people, and those reports are coming from the company that makes Remicade, and the FDA. " I wanted to let everyone know that I found a solution for Reactive Arthritis. The email I received implied that I took a very serious risk in choosing remicade. I am 31 years old, live alone, support myself and was in otherwise excellent health as a former college athlete. The greater risk is in giving up and becoming dependent on painkillers and antidepressants for the rest of my life. My stomach is seriously damaged from all these medications. The first link refers only to those with Congestive Heart Failure. I have no history of heart problems and neither does my family. In regards to the second link, my rheumatologist did a TB test (known as PPD) at the office a week before he would even let me schedule the Remicade infusion. I have improved exponentially and found the Remicade infusion rather pleasant - it has allowed me to start walking without the need for equipment. I'll let you know how the detox from the meds goes. DON'T GIVE UPGet more from the Web. FREE MSN Explorer download : http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 I hope this was not referring to my reply message about steroids. If so, please bear in mind that I was not saying that I am not glad someone is in remission (!), just relating my own personal experience which is just that and in no way meant as anything else. M > > " That's wonderful Maya! > > Today is the first day of the rest of my life....... > > > --------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 PS Also, I dont' even know what Remicade is, I must have read the post wrong, I apologize : ) M > Peggy wrote: > > " That's wonderful Maya! > > Today is the first day of the rest of my life....... > > > --------------------------------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2002 Report Share Posted January 30, 2002 I do understand, Maya, and I for one am extremely happy for you. I think everyone who has been posting is as well. I also, as you may or may not remember, have ReA. However, I have the beginnings of aorta complications due to ReA, and this news for me means that I probably won¹t be going on Remicade now. This news means that as well for a lot of ³lifers² with RS/ReA out there as well, who suffer from similar complications. So it¹s extremely important we get that information out there to them, as it could be life-threatening to take Remicade with heart problems. I honestly wish you complete remission, and long health. : ) -- Robbie in FL, co-moderator chronic_pain. AS/ReA 18 + years, and still going... feralelf@... Quote Link to comment Share on other sites More sharing options...
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