Guest guest Posted November 23, 2007 Report Share Posted November 23, 2007 > > >Hello all, > > I am new to the group. I will be getting explanted before the > > end of the year. I am looking for a supportive doctor. Any advice?.... > >Jean > >I am in sdale, Arizona...I hope I am utilizing this website correctly... > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2007 Report Share Posted November 23, 2007 I hope you are using one of the recommended doctors from our list on . We have some horror stories from women who have gone elsewhere. Lynda At 12:12 PM 11/23/2007, you wrote: > > > > > >Hello all, > > > I am new to the group. I will be getting explanted before the > > > end of the year. I am looking for a supportive doctor. Any >advice?.... > > >Jean > > >I am in sdale, Arizona...I hope I am utilizing this website >correctly... > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2007 Report Share Posted November 23, 2007 > > > > >Hello all, > > > I am new to the group. I will be getting explanted before the > > > end of the year. I am looking for a supportive doctor. Any > advice?.... > > >Jean > > >I am in sdale, Arizona...I hope I am utilizing this website > correctly... > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2007 Report Share Posted November 23, 2007 ,You're doing fine . .. If you'll add your reply to the top of the page, it will be easier to read . . . But that doesn't matter, we can see it anyway.Yes, please tell us your story! Denver may be the closest to you . . . Dr. Huang. . . Someone may have another recommendation though.I should be in Mesa in January. Maybe we can meet.Hugs,Rogene Re: New Member > > > > >Hello all, > > > I am new to the group. I will be getting explanted before the > > > end of the year. I am looking for a supportive doctor. Any > advice?.... > > >Jean > > >I am in sdale, Arizona...I hope I am utilizing this website > correctly... > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2007 Report Share Posted November 23, 2007 > > > > > > >Hello all, > > > > I am new to the group. I will be getting explanted before the > > > > end of the year. I am looking for a supportive doctor. Any > >advice?.... > > > >Jean > > > >I am in sdale, Arizona...I hope I am utilizing this website > >correctly... > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2007 Report Share Posted November 23, 2007 > > > > > > > > >Hello all, > > > > > I am new to the group. I will be getting explanted before > > the > > > > > end of the year. I am looking for a supportive doctor. Any > > > advice?.... > > > > >Jean > > > > >I am in sdale, Arizona...I hope I am utilizing this > > website > > > correctly... > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > <!-- > > #ygrp-mkp{ > border:1px solid #d8d8d8;font-family:Arial;margin:14px 0px;padding:0px 14px;} > #ygrp-mkp hr{ > border:1px solid #d8d8d8;} > #ygrp-mkp #hd{ > color:#628c2a;font-size:85%;font-weight:bold;line- height:122%;margin:10px 0px;} > #ygrp-mkp #ads{ > margin-bottom:10px;} > #ygrp-mkp .ad{ > padding:0 0;} > #ygrp-mkp .ad a{ > color:#0000ff;text-decoration:none;} > --> > > > > <!-- > > #ygrp-sponsor #ygrp-lc{ > font-family:Arial;} > #ygrp-sponsor #ygrp-lc #hd{ > margin:10px 0px;font-weight:bold;font-size:78%;line-height:122%;} > #ygrp-sponsor #ygrp-lc .ad{ > margin-bottom:10px;padding:0 0;} > --> > > > > <!-- > > #ygrp-mlmsg {font-size:13px;font-family:arial, helvetica, clean, sans-serif;} > #ygrp-mlmsg table {font-size:inherit;font:100%;} > #ygrp-mlmsg select, input, textarea {font:99% arial, helvetica, clean, sans-serif;} > #ygrp-mlmsg pre, code {font:115% monospace;} > #ygrp-mlmsg * {line-height:1.22em;} > #ygrp-text{ > font-family:Georgia; > } > #ygrp-text p{ > margin:0 0 1em 0;} > #ygrp-tpmsgs{ > font-family:Arial; > clear:both;} > #ygrp-vitnav{ > padding-top:10px;font-family:Verdana;font-size:77%;margin:0;} > #ygrp-vitnav a{ > padding:0 1px;} > #ygrp-actbar{ > clear:both;margin:25px 0;white-space:nowrap;color:#666;text- align:right;} > #ygrp-actbar .left{ > float:left;white-space:nowrap;} > .bld{font-weight:bold;} > #ygrp-grft{ > font-family:Verdana;font-size:77%;padding:15px 0;} > #ygrp-ft{ > font-family:verdana;font-size:77%;border-top:1px solid #666; > padding:5px 0; > } > #ygrp-mlmsg #logo{ > padding-bottom:10px;} > > #ygrp-vital{ > background-color:#e0ecee;margin-bottom:20px;padding:2px 0 8px 8px;} > #ygrp-vital #vithd{ > font-size:77%;font-family:Verdana;font-weight:bold;color:#333;text- transform:uppercase;} > #ygrp-vital ul{ > padding:0;margin:2px 0;} > #ygrp-vital ul li{ > list-style-type:none;clear:both;border:1px solid #e0ecee; > } > #ygrp-vital ul li .ct{ > font-weight:bold;color:#ff7900;float:right;width:2em;text- align:right;padding-right:.5em;} > #ygrp-vital ul li .cat{ > font-weight:bold;} > #ygrp-vital a{ > text-decoration:none;} > > #ygrp-vital a:hover{ > text-decoration:underline;} > > #ygrp-sponsor #hd{ > color:#999;font-size:77%;} > #ygrp-sponsor #ov{ > padding:6px 13px;background-color:#e0ecee;margin-bottom:20px;} > #ygrp-sponsor #ov ul{ > padding:0 0 0 8px;margin:0;} > #ygrp-sponsor #ov li{ > list-style-type:square;padding:6px 0;font-size:77%;} > #ygrp-sponsor #ov li a{ > text-decoration:none;font-size:130%;} > #ygrp-sponsor #nc{ > background-color:#eee;margin-bottom:20px;padding:0 8px;} > #ygrp-sponsor .ad{ > padding:8px 0;} > #ygrp-sponsor .ad #hd1{ > font-family:Arial;font-weight:bold;color:#628c2a;font- size:100%;line-height:122%;} > #ygrp-sponsor .ad a{ > text-decoration:none;} > #ygrp-sponsor .ad a:hover{ > text-decoration:underline;} > #ygrp-sponsor .ad p{ > margin:0;} > o{font-size:0;} > .MsoNormal{ > margin:0 0 0 0;} > #ygrp-text tt{ > font-size:120%;} > blockquote{margin:0 0 0 4px;} > .replbq{margin:4;} > --> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2008 Report Share Posted January 27, 2008 welcome feel free to e-mail me anytime about anything God bless take care Carla Curry <noogurl@...> wrote: Hello. I'm carla. I was diagnosed with R.A. in 2002. I have had numerous doctor visits and medications and nothing works for the pain. I would love something just to take the edge off sometimes. Right now is good. Not much pain. I am a 43yr old mother of four. I need somewhere I can chat, whine and vent with someone who understands. I also have degenerative disc disease and I work as a waitress. Go figure.LOL --------------------------------- Never miss a thing. Make your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2008 Report Share Posted January 28, 2008 Welcome, Jim! Are you in the LA area? Can you tell me about being a native natural hygienist? Thanks, Pamela Igo <jimi761@...> wrote: Thankyou for allowing me to join. I am a native natural hygienist since 1971 here is southern California, who looks forward to interacting with NN. Best Always, Jim Well done is better than well said..., Jim Igo --------------------------------- Be a better friend, newshound, and know-it-all with Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2008 Report Share Posted January 29, 2008 Yes, & I do lectures @ rawfood potlucks about native natural hygiene. Born in Santa , as were my grandfather's grandfathers then known as Kuruvungna in our Tongna language means, living in the sun. I am tri-tribal by blood, Tongva & Ajachamen & Kumeyaay. Where are you people native from? What would you like to know about natural hygiene from a native perspective? Thanks for the welcoming, Jim Pamela <calblonde1@...> wrote: Welcome, Jim! Are you in the LA area? Can you tell me about being a native natural hygienist? Thanks, Pamela Igo <jimi761@...> wrote: Thankyou for allowing me to join. I am a native natural hygienist since 1971 here is southern California, who looks forward to interacting with NN. Best Always, Jim Well done is better than well said..., Jim Igo --------------------------------- Be a better friend, newshound, and know-it-all with Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2008 Report Share Posted January 29, 2008 Native to where? Belinda > > Thankyou for allowing me to join. I am a native natural hygienist since 1971 here is southern California, who looks forward to interacting with NN. > Best Always, Jim > > > Well done is better than well said..., Jim Igo > > --------------------------------- > Be a better friend, newshound, and know-it-all with Mobile. Try it now. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2008 Report Share Posted January 29, 2008 The indigenous tribes of southern California, Kumeyaay-Ajachamen-Tongva, the place of my birth & the birth of my grandfather's grandfathers. Coastal southern Calif includes cities like LA, San Diego, & orange county areas. Would like to hear the cultural affinities of others, & ask the same question NATIVE TO WHERE, as it does not always show up in bios, etc. Best Always, Jim labelleacres <bilherbs@...> wrote: Native to where? Belinda > > Thankyou for allowing me to join. I am a native natural hygienist since 1971 here is southern California, who looks forward to interacting with NN. > Best Always, Jim > > > Well done is better than well said..., Jim Igo > > --------------------------------- > Be a better friend, newshound, and know-it-all with Mobile. Try it now. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2008 Report Share Posted January 29, 2008 My people are from Ireland. I'd like to know anything you'd like to share about natural hygiene from a native perspective. Pamela Igo <jimi761@...> wrote: Yes, & I do lectures @ rawfood potlucks about native natural hygiene. Born in Santa , as were my grandfather's grandfathers then known as Kuruvungna in our Tongna language means, living in the sun. I am tri-tribal by blood, Tongva & Ajachamen & Kumeyaay. Where are you people native from? What would you like to know about natural hygiene from a native perspective? Thanks for the welcoming, Jim --------------------------------- Be a better friend, newshound, and know-it-all with Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2008 Report Share Posted January 29, 2008 Cannot speak for Ireland directly simply because I am not from there & have no voice for that part of the world & their traditions. Natural Hygiene clearly relates to all indigenous cultures anywhere in the world. NH needs spokes persons from every indigenous footprint across the globe as it relates to native nutrition, tradition, culture, language, customs....before the age old wisdom's are lost forever & or become difficult to re-kindle. All I can mention is my own personal experience. Once I met a guy from Ireland who is a musician, he gave me a complementary copy of his CD. One of his songs spoke of certain American Indian tribes contributing to the aide of Ireland in the 1800's @ a time when American Indian peoples were suffering great loses yet still able to give to Ireland during the Irish potato famine. This musician, whose name I can not recall right off, spoke out how thankful he was of the American Indian for showing support to Ireland during that time. Best Always, Jim Pamela <calblonde1@...> wrote: My people are from Ireland. I'd like to know anything you'd like to share about natural hygiene from a native perspective. Pamela Igo <jimi761@...> wrote: Yes, & I do lectures @ rawfood potlucks about native natural hygiene. Born in Santa , as were my grandfather's grandfathers then known as Kuruvungna in our Tongna language means, living in the sun. I am tri-tribal by blood, Tongva & Ajachamen & Kumeyaay. Where are you people native from? What would you like to know about natural hygiene from a native perspective? Thanks for the welcoming, Jim --------------------------------- Be a better friend, newshound, and know-it-all with Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2008 Report Share Posted January 29, 2008 Hmmm I'm native to Brooklyn, NY but both my parents were born and raised in Finland. I spent 10 of my adult years there working and learning all sorts of interesting things. Belinda > > > > Thankyou for allowing me to join. I am a native natural hygienist > since 1971 here is southern California, who looks forward to > interacting with NN. > > Best Always, Jim > > > > > > Well done is better than well said..., Jim Igo > > > > --------------------------------- > > Be a better friend, newshound, and know-it-all with Mobile. > Try it now. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2008 Report Share Posted January 31, 2008 I’m an American mutt. Unknown quantities of English, Irish, ish, German, Norse (my maiden name!) and my grandfather was supposedly ¼ American Indian but we can’t trace it back officially. Something about our relative skipping out on the census that was done. Both sides of my family are very very unhealthy and that side is pretty much over 55.. gone. Grew up on ketchup & wonder bread sandwiches and as adults they love their hostess cup cakes, frito chili pie with “American cheese” and margarine. As much as I’d LOVE to explore that I wouldn’t even know where to start. The side of my family I can trace back goes pretty far but it’s still a mix of things though mostly European I suppose. =) So, unable to do that I try to judge my body by how it is now and what is making it unhealthy. I have to limit my carbohydrates or my blood sugar goes crazy and the insulin resistance gets worse. It is great to see you are keeping the traditions alive. So many are lost to us and it is weird to feel disembodied from my culture. Dawn From: [mailto: ] On Behalf Of labelleacres Sent: Tuesday, January 29, 2008 5:57 PM Subject: Re: NEW MEMBER Hmmm I'm native to Brooklyn, NY but both my parents were born and raised in Finland. I spent 10 of my adult years there working and learning all sorts of interesting things. Belinda > > > > Thankyou for allowing me to join. I am a native natural hygienist > since 1971 here is southern California, who looks forward to > interacting with NN. > > Best Always, Jim > > > > > > Well done is better than well said..., Jim Igo > > > > --------------------------------- > > Be a better friend, newshound, and know-it-all with Mobile. > Try it now. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2008 Report Share Posted April 14, 2008 Welcome Jan! I look forward to learning more about you and your husband! Peace and fabulous smellies! Katrina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2008 Report Share Posted April 15, 2008 Hi Lilly! Welcome to the group! You have come to a very supportive, caring place filled with wonderful supportive people. There is always an understanding shoulder here! Always advice to be shared, questions answered, vents to be heard. We also are kept updated by recent medical advances and studies! You sound exactly like I sounded! About feeling like you were missing out on your youth, and that you are the only one in your family to have this illness! That used to be my mantra! I was diagnosed with CFS at the age of 19 while in college. I didn't quite buy into the diagnosis because it felt surely as if I was dying. I did a special diet my doctor put me on and that seemed to put it into remission a couple of years later. At the age of 28, I came down with all of these really odd symptoms. I was in such pain, and couldn't feel one side of my body. I was bedbound. Finally, at the age of 30 they diagnosed Fibromyalgia and myofascia pain syndrome. Then 2 years later, it was the inflammatory arthritis that hit. It began in the knees. Bilateral patellar femoral syndrome was diagnosed. I was sent to sports med and ortho docs who both also ruled it was inflammatory and not mechanical. Except for elevated CRP, Sed, Westegren, and the anti ccp, my labs, ANA and RF are normal. It took a couple of years for them to decide it was inflammatory arthritis and the pains began to spread. So I was started on Plaquenil, then 9 or 10 months ago Sulfasalazine. I've had to stop this med for 3 months due to bronchitis and again now for an upper respiratory infection. I've been off it so much its hard to tell what it does at times. It's really hard when one feels like they are missing out on their youth. For the longest time, I had no support system. My family supported me but it was really hard for anyone to get. All of the people I talked with that had my illness were several years older. They had much wisdom to offer me and I made great friendships. The area that I struggled with was these people had lived full lives, had their children, married, and had retired from their career early, but had been able to work at it for several years. I was disabled by the age of 30 (I am now 36). I hadn't been through what they had. Most of them had long happy marriages before their health went bad. They didn't have to worry about trying to date while chronically ill. I felt so alone and isolated. I vented, I journaled, I learned to create a new life around the illness (well still trying to atleast). Through it all, I have had hope though, that tomorrow will be better than today. That each day medical advances are being made. That each day the pain will be felt a little less! lillynn99 <lillynn99@...> wrote: Hello all... I'm a new member seeking some kind of support mainly mentally with my illness. I've been diagnosed with rheumatoid arthritis since the age of 21. I am now 26 and have now just recently been diagnosed with fibromyalgia. It's been rather difficult to live a normal life these passed couple of years. I feel like I've been robbed of my youth. So many limitations I must now face... I was in denial at first thinking that I was misdiagnosed... then reality hit and yeah... I had to accept the fact that I do have a chronic illness. It's been hard to cope and I feel like no one in my family quite understands what I'm going through. Especially me being the only one with this illness. Yes... lucky me huh? No one else in my family has this illness. It's gotten so bad that I've been on and off of prednisone... so being a once thin individual I've packed on about 40lbs... and I'm sick and tired of the insults and criticism from my family and friends... Okay... enough complaining... Such is life... between 0000-00-00 and 9999-99-99 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2008 Report Share Posted April 15, 2008 Wow... and I thought I had it bad! Oh my goodness I am sooo sorry to hear that it happened to you at even a younger age. It seems like with this illness it's followed by other illnesses... I guess that's what happens when your immune system is working against you. Your message was so touching. It's nice to know that there's someone out there that can relate to how I'm feeling. I've lost friends over this. Not too long ago my best friend of 12 yrs told me she wanted to end our friendship because she didn't feel like I made enough of an effort to hang out with her. Her exact words were... " I'm sorry you have a chronic illness but using your sickness as an excuse to not hang out with me is getting old " . It was like a dagger to the heart. Like I get to choose whether or not I get my flares. I have my good days and my bad days. So... I've been pretty depressed. Seeing a psychologist on a regular basis though because I actually did become suicidal. Like yourself I too dreamnt of living a normal life, having a family. I was married and was pregnant but due to all the medications I couldn't have that baby. I had a miscarriage at 4 months and that led to the downfall of my marriage. Although it was 4yrs ago it seems like yesterday that I lost my child. I had the contractions and everything. I was rushed to the hospital in and out of conscience. All I remembered was seeing sooo much blood. All 3 nurses, their glove covered hands were drenched with my blood... it was everywhere,even on the floor. I was crushed. A part of me died that day. And then I just wanted to die along with my baby... It has been very hard to cope at times. My psychologist is encouraging me to reach out to those who have the same illness as me. I've been in isolation not wanting to talk about my problems in fear of being viewed as... " different " . Don't feel like I fit in with society. But I'm glad you understand... I just need to keep in mind I'm not alone. I am sooo sorry that you had to go through so much suffering for so long... yet I admire your attitude toward it all. Looking forward toward a better day with less pain. I am working on getting to that point. Every night I go to sleep in fear of waking up paralyzed... I was once an independent person, worked two jobs, had my own house, my own car didn't need anyone. Now I've lost it all... everything... Hello all... I'm a new member seeking some kind of support mainly > mentally with my illness. I've been diagnosed with rheumatoid > arthritis since the age of 21. I am now 26 and have now just recently > been diagnosed with fibromyalgia. It's been rather difficult to live a > normal life these passed couple of years. I feel like I've been robbed > of my youth. So many limitations I must now face... I was in denial at > first thinking that I was misdiagnosed... then reality hit and yeah... > I had to accept the fact that I do have a chronic illness. It's been > hard to cope and I feel like no one in my family quite understands what > I'm going through. Especially me being the only one with this > illness. Yes... lucky me huh? No one else in my family has this > illness. It's gotten so bad that I've been on and off of prednisone... > so being a once thin individual I've packed on about 40lbs... and I'm > sick and tired of the insults and criticism from my family and > friends... Okay... enough complaining... Such is life... > > > > > > between 0000-00-00 and 9999-99-99 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2008 Report Share Posted May 20, 2008 Welcome. There's a great bunch of people here. You'll & Dr to put in an appeal for Enbrel. It needs to be proved by the Dr that current meds are not sufficient. --- In , " ksanders58 " <ksanders58@...> wrote: > > i am a 38 year old female who was diagnosed with ra two years ago. it > came on suddenly in my knees and muscles. i began to have pain in my > feet and then wrists. it eventually led to the loss of my job, > although, due to the fact i worked for a physician he was sympathetic > but i was just missing way too much work. i have been on methotrexate > from the onset and have gone through plaquenil and sulfazine. my > insurance wouldn't cover enbrel or orencia. i also had my > rheumatologist relocate to a different state. the one i saw for the > first time two weeks ago was only concerned with my pain medication, so > now i am traveling 2 hours to continue to see my original doc.i also > have fibromyalgia and severe depression. i am hoping to find others in > my shape with hope possibly and understanding of what i face on a daily > basis. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2008 Report Share Posted May 23, 2008 Welcome Miriam. Did you choose goat milk b/c she had problems with cow milk? I am just curious. > > Hello Everyone, > > It is a pleasure to join the group. I am located in Wisconsin, but I > am originally from Brazil. My family and I are always looking for > better health nutrition and good information. Our almost 3 yo daughter > is severely allergic to few foods and has been drinking raw goat milk > since she was about 9mo. > > I will post more as time allows. Be well > > Miriam > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2008 Report Share Posted June 2, 2008 I think Enbrel is great. I started on it about a year ago. I noticed it started working in 3 weeks. Today I have more energy & can walk 1.5 miles before I'm tired. A year ago I could only take 8 inch steps and walk 20 feet. So it's done a fantastic job getting me to a much better place. > > Hi, > My name is . I am 44 years old and I have JRA.. was diagnosed > at 12 years old. > > Up until 6 months ago I have managed with NSAIDs. To be honest, I > don't know a day without pain, but it's also a blessing... if I had > late onset RA I don't know if I could cope. > I have had many surgeries.. from wrist, knuckle replacement to lower > jaw surgery. I am lucky in that I have had little to no inflammation > and stiffness. What little of that I had usually disapates in 30 > minutes or so after I start moving in the mornings. Until recently. > Now I have pain and stiffness, some days more than others (when > before it was usually a " mechanical " problem.. can't open bottles and > doors, button my clothes, etc.) Periodically I have major swelling in > one or both knees and stiffness which is new. My hands hurt even > though I am not doing anything. > I started receiving social security 5 years ago, I was a floral > designer (on my feet all day, sometimes 16 hours, working with my > hands)for 24 years. I think ceasing to work with my hands as much may > contribute to the pain I am feeling now, but I also know I can no > longer work. I draw and paint and excercise my hands when I can. > > I started seeing a new rheumatologist two years ago, and at my first > appointment, looking at my records, He asked why I am not on Enbrel. > I was afraid of the side effects, and still am. > > Recently one day I woke up and decided to stop treating the symptoms > and try to keep the RA from worsening. > > So, I am at the point to try Enbrel. My doctor is very much for it, > and he explained the TB, infections,site reaction, which he has had > experience in dealing with his patients on Enbrel. > > I would like to hear from Enbrel patients, what their experiences > have been, and what they have learned about the more serious and > possibly fatal side effects that may occur. > > I have a history of kidney stones and a couple of abnormal pap smears > (one with precancerous cells, but have been treated, and have tested > negative for cervical cancer). If starting Enbrel, will these > conditions worsen (cancer, kidney disease)? > > What lab work do I need to expect and how often? > > Is there anything I can take to help lessen the risk of infections? > > I am still afraid of Enbrel, but now I think I am more afraid of the > RA worsening and leaving me debilitated. > > Forgive me for being long winded, this a new and frightening > experience for me. > > Thank you, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2008 Report Share Posted June 2, 2008 Hi and welcome! Certainly starting a new medication can be scary. It's normal to worry about the side effects. Enbrel is the oldest anti-TNF and although side effects can be serious, they are very, very, rare. Also most of them are thought to go away if you stop the drug, so trying Enbrel can really be worth it. It was actually the first drug that my rheumatologist put me on, along with Celebrex and prednisone. Once you have the TB test and a chest x-ray, you're cleared to start it. It started working within a week and I loved how I had more energy and just felt so much better. I'm nearly ready to have my 2nd child and I've stayed on Enbrel and low dose predisone throughout, so I was comfortable deciding it was safe for me and also reasonably safe for the baby. Since Enbrel lowers TNF which is involved in the immune response, we have to be careful of infection. Your questions about risks of recurrence with kidney stones and cervical changes are good ones to ask your doc. I'm not an MD, but I wouldn't imagine the immune response is involved in kidney stones. Cervical changes can be related to HPV, but most strains of HPV (except some of the mean ones that are linked to cancer) cause an abnormal pap once or twice, and then retreat as your immune system pushes them back. I had an abnormal pap in 2000, and never again since. They goofed the HPV test, so I don't know if that was involved. Like any drug, you want to stay in close contact with your internist and your rheumatologist while you take it. When I've been sick I hold the Enbrel so my body can fight off the bug. My rheum is also quick to give me antibiotics as needed so nothing gets a foothold. I work in a medical setting every day and even then, I don't get sick that much, even with a preschooler bringing home tons of crud! As for site reactions, I didn't have one for the first 4-6 weeks, then I got a big, hot, hive. I started taking Tagamet in the morning of shot day, and then a benadryl at night. After about 6 mos the hive was hardly noticeable. Now it's just a red spot that lasts maybe a day or so. Re: labs, I just get the usual rheumatology labs every 3-6 mos of ESR, CRP, RF, CBC etc. For what it's worth, I pray that Enbrel keeps working for me b/c I feel it's given me my life back. I hope if you try it, you get the same great response. Welcome again and feel better! Kate F [ ] New member Hi, My name is . I am 44 years old and I have JRA.. was diagnosed at 12 years old. Up until 6 months ago I have managed with NSAIDs. To be honest, I don't know a day without pain, but it's also a blessing... if I had late onset RA I don't know if I could cope. I have had many surgeries.. from wrist, knuckle replacement to lower jaw surgery. I am lucky in that I have had little to no inflammation and stiffness. What little of that I had usually disapates in 30 minutes or so after I start moving in the mornings. Until recently. Now I have pain and stiffness, some days more than others (when before it was usually a " mechanical " problem.. can't open bottles and doors, button my clothes, etc.) Periodically I have major swelling in one or both knees and stiffness which is new. My hands hurt even though I am not doing anything. I started receiving social security 5 years ago, I was a floral designer (on my feet all day, sometimes 16 hours, working with my hands)for 24 years. I think ceasing to work with my hands as much may contribute to the pain I am feeling now, but I also know I can no longer work. I draw and paint and excercise my hands when I can. I started seeing a new rheumatologist two years ago, and at my first appointment, looking at my records, He asked why I am not on Enbrel. I was afraid of the side effects, and still am. Recently one day I woke up and decided to stop treating the symptoms and try to keep the RA from worsening. So, I am at the point to try Enbrel. My doctor is very much for it, and he explained the TB, infections,site reaction, which he has had experience in dealing with his patients on Enbrel. I would like to hear from Enbrel patients, what their experiences have been, and what they have learned about the more serious and possibly fatal side effects that may occur. I have a history of kidney stones and a couple of abnormal pap smears (one with precancerous cells, but have been treated, and have tested negative for cervical cancer). If starting Enbrel, will these conditions worsen (cancer, kidney disease)? What lab work do I need to expect and how often? Is there anything I can take to help lessen the risk of infections? I am still afraid of Enbrel, but now I think I am more afraid of the RA worsening and leaving me debilitated. Forgive me for being long winded, this a new and frightening experience for me. Thank you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2008 Report Share Posted June 2, 2008 Welcome Jeanette: So happy you are feeling so good! & nbsp; Imagine, able to walk that distance. & nbsp; There is hope for all of us!!!!!! & nbsp; You are certainly in a very good place now. Hugs, Barbara From: Jeanette & lt;jhkerch@... & gt; Subject: [ ] Re: New member Date: Monday, June 2, 2008, 1:56 PM I think Enbrel is great. I started on it about a year ago. I noticed it started working in 3 weeks. Today I have more energy & amp; can walk 1.5 miles before I'm tired. A year ago I could only take 8 inch steps and walk 20 feet. So it's done a fantastic job getting me to a much better place. & gt; & gt; Hi, & gt; My name is . I am 44 years old and I have JRA.. was diagnosed & gt; at 12 years old. & gt; & gt; Up until 6 months ago I have managed with NSAIDs. To be honest, I & gt; don't know a day without pain, but it's also a blessing... if I had & gt; late onset RA I don't know if I could cope. & gt; I have had many surgeries.. from wrist, knuckle replacement to lower & gt; jaw surgery. I am lucky in that I have had little to no inflammation & gt; and stiffness. What little of that I had usually disapates in 30 & gt; minutes or so after I start moving in the mornings. Until recently. & gt; Now I have pain and stiffness, some days more than others (when & gt; before it was usually a " mechanical " problem.. can't open bottles and & gt; doors, button my clothes, etc.) Periodically I have major swelling in & gt; one or both knees and stiffness which is new. My hands hurt even & gt; though I am not doing anything. & gt; I started receiving social security 5 years ago, I was a floral & gt; designer (on my feet all day, sometimes 16 hours, working with my & gt; hands)for 24 years. I think ceasing to work with my hands as much may & gt; contribute to the pain I am feeling now, but I also know I can no & gt; longer work. I draw and paint and excercise my hands when I can. & gt; & gt; I started seeing a new rheumatologist two years ago, and at my first & gt; appointment, looking at my records, He asked why I am not on Enbrel. & gt; I was afraid of the side effects, and still am. & gt; & gt; Recently one day I woke up and decided to stop treating the symptoms & gt; and try to keep the RA from worsening. & gt; & gt; So, I am at the point to try Enbrel. My doctor is very much for it, & gt; and he explained the TB, infections,site reaction, which he has had & gt; experience in dealing with his patients on Enbrel. & gt; & gt; I would like to hear from Enbrel patients, what their experiences & gt; have been, and what they have learned about the more serious and & gt; possibly fatal side effects that may occur. & gt; & gt; I have a history of kidney stones and a couple of abnormal pap smears & gt; (one with precancerous cells, but have been treated, and have tested & gt; negative for cervical cancer). If starting Enbrel, will these & gt; conditions worsen (cancer, kidney disease)? & gt; & gt; What lab work do I need to expect and how often? & gt; & gt; Is there anything I can take to help lessen the risk of infections? & gt; & gt; I am still afraid of Enbrel, but now I think I am more afraid of the & gt; RA worsening and leaving me debilitated. & gt; & gt; Forgive me for being long winded, this a new and frightening & gt; experience for me. & gt; & gt; Thank you, & gt; & gt; & gt; Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2008 Report Share Posted June 2, 2008 WELCOME LAURA, I TO HAVE HAD JRA SINCE I WAS 5. SO PRETTY MUCH I HAVE LIVED WITH PAIN FOR WAY TOO LONG BUT I HAVE LEARNED TO DEAL FOR MY FAMILYS SAKE!!!! I WISH I COULD TELL YOU SOMETHING ABOUT THE MED YOUR ASKING ABOUT BUT I DON'T TAKE THAT ONE. THANK GOODNESS CUZ I TAKE EVERYTHING ELSE!! I HOPE YOU FEEL BETTER SOON, HANG IN THERE! GOD BLESS,MELYNDAGAMEZ 6/2/08 2:20P.M.CENTRAL TIME [ ] New member Hi, My name is . I am 44 years old and I have JRA.. was diagnosed at 12 years old. Up until 6 months ago I have managed with NSAIDs. To be honest, I don't know a day without pain, but it's also a blessing... if I had late onset RA I don't know if I could cope. I have had many surgeries.. from wrist, knuckle replacement to lower jaw surgery. I am lucky in that I have had little to no inflammation and stiffness. What little of that I had usually disapates in 30 minutes or so after I start moving in the mornings. Until recently. Now I have pain and stiffness, some days more than others (when before it was usually a " mechanical " problem.. can't open bottles and doors, button my clothes, etc.) Periodically I have major swelling in one or both knees and stiffness which is new. My hands hurt even though I am not doing anything. I started receiving social security 5 years ago, I was a floral designer (on my feet all day, sometimes 16 hours, working with my hands)for 24 years. I think ceasing to work with my hands as much may contribute to the pain I am feeling now, but I also know I can no longer work. I draw and paint and excercise my hands when I can. I started seeing a new rheumatologist two years ago, and at my first appointment, looking at my records, He asked why I am not on Enbrel. I was afraid of the side effects, and still am. Recently one day I woke up and decided to stop treating the symptoms and try to keep the RA from worsening. So, I am at the point to try Enbrel. My doctor is very much for it, and he explained the TB, infections,site reaction, which he has had experience in dealing with his patients on Enbrel. I would like to hear from Enbrel patients, what their experiences have been, and what they have learned about the more serious and possibly fatal side effects that may occur. I have a history of kidney stones and a couple of abnormal pap smears (one with precancerous cells, but have been treated, and have tested negative for cervical cancer). If starting Enbrel, will these conditions worsen (cancer, kidney disease)? What lab work do I need to expect and how often? Is there anything I can take to help lessen the risk of infections? I am still afraid of Enbrel, but now I think I am more afraid of the RA worsening and leaving me debilitated. Forgive me for being long winded, this a new and frightening experience for me. Thank you, ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2008 Report Share Posted June 2, 2008 I have been on Enbrel for over five years, and it works wonderfully well to control my pain and inflammation. As far as side effects, the only one that I have is the feeling of no pain. I don't get infections often, either. Just because all of those horrible possible side effects are listed for Enbrel, that doesn't mean that you will get any of them. I am lucky enough not to, and you may be, too. You won't know until you try. I am a lot more afraid of the side effects of RA, the crippling damage it can cause. I wish you the same good luck that I have with Enbrel. Sue On Monday, June 2, 2008, at 04:45 AM, petaldachs wrote: > > I would like to hear from Enbrel patients, what their experiences > have been, and what they have learned about the more serious and > possibly fatal side effects that may occur. > Quote Link to comment Share on other sites More sharing options...
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