Guest guest Posted March 1, 2006 Report Share Posted March 1, 2006 Hi Everyone, Is there anyone on this list using LDN for RA? I would love to gather some into for someone with RA. Thanks Aletha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2006 Report Share Posted March 1, 2006 Hi! Both MS and RA not active acording to doc who recognized the deformity of the fingers of my right hand. My maternal grandfather's fingers turned at right angles to his poor hands. I consider MS the genetic consequence to this autoimmune disease. Best. Shirley Lotz --- Aletha Wittmann <Aletha@...> wrote: > Hi Everyone, > > Is there anyone on this list using LDN for RA? I > would love to gather some > into for someone with RA. > > Thanks > Aletha > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2006 Report Share Posted March 1, 2006 My Mom has RA. She is on LDN for one month thus far. She is also on low dose Minocin M/W/F per a separate protocol. The use of LDN is meant to up modulate her immune system as well as to help with urine/bowel controls and fatique. She also has many MS like symptoms: shooting pains and some tremor. I would like to know more people treating RA with LDN as well. Regards, Sheng Lin --- Aletha Wittmann <Aletha@...> wrote: > Hi Everyone, > > Is there anyone on this list using LDN for RA? I > would love to gather some > into for someone with RA. > > Thanks > Aletha > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2006 Report Share Posted March 1, 2006 Hi Shirley, That is great news. As far as improvements: what have you noticed in regards to the RA and the MS? Thanks Aletha Re: [low dose naltrexone] RA > Hi! Both MS and RA not active acording to doc who > recognized the deformity of the fingers of my right > hand. My maternal grandfather's fingers turned at > right angles to his poor hands. I consider MS the > genetic consequence to this autoimmune disease. Best. > Shirley Lotz > > --- Aletha Wittmann <Aletha@...> wrote: > >> Hi Everyone, >> >> Is there anyone on this list using LDN for RA? I >> would love to gather some >> into for someone with RA. >> >> Thanks >> Aletha >> >> > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2006 Report Share Posted April 23, 2006 Dear Trish~ I too am alone and single and have learned that it helps to interact with others like you're doing here and don't try to go it alone. From what I've read there's more people helped with some of the medications than hurt. It's just up to each of us to monitor our responses to the medications, make our doctors aware of our " issues " with our illness and our meds, and make adjustments accordingly. Sometimes it will mean trying different meds and sometimes it will mean trying different doctors. I approach things with a " it is what it is " attitude and try to make the best of it. You'll find a lot of great ideas about how to cope on this site and a lot of support on the bad days. Don't let RA or the fear of meds control you. Try to be strong and take it on! *smile* IAN [ ] RA > Hello Everyone > I have just been diagnosed with RA and bo am I scared to take any pf > the medications after eradinga bout them/ > I am looking for some support as I am single and alone > Umm not sure what else to write here > Trish > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2006 Report Share Posted April 24, 2006 In a message dated 4/23/2006 9:38:22 AM Central Standard Time, sleepysea66@... writes: Hello Everyone I have just been diagnosed with RA and bo am I scared to take any pf the medications after eradinga bout them/ I am looking for some support as I am single and alone Umm not sure what else to write here Trish welcome Trish! You definately have come to the right place for suooprt and information! Our moderators and a go above and beyond when lookfing for answers to our questions.... thanks gals! At first you will have all kinds of emotions about this, and that is normal. But know you arent alone in this! Are you taking any medication? HUGS talk soon. http://www1.myspace.com/julz2kidz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2006 Report Share Posted April 26, 2006 Welcome Trish, Being diagnosed with RA is very overwhelming. This is a great place to be, so glad your here. What type of meds are you starting? It's very important to treat the RA with meds to stop the progression of the disease. If you need to chat, you can email me anytime, Tawny --- In , " sleepysea66 " <sleepysea66@...> wrote: > > Hello Everyone > I have just been diagnosed with RA and bo am I scared to take any pf > the medications after eradinga bout them/ > I am looking for some support as I am single and alone > Umm not sure what else to write here > Trish > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2006 Report Share Posted April 29, 2006 Hello Ian Thank you for your Email I have been Prednisone and now the Doctor wants to put me on Methotrexate I have read up on this stuff and they dont want me on Prednisone My fear comes from past reactiosn like panic attacks to other drugs ive had man this is so hard i keep active and stuff Ian would you please send me email to sleepysea66@... Kindest regards Trish Ian <ianchicago@...> wrote: Dear Trish~ I too am alone and single and have learned that it helps to interact with others like you're doing here and don't try to go it alone. From what I've read there's more people helped with some of the medications than hurt. It's just up to each of us to monitor our responses to the medications, make our doctors aware of our " issues " with our illness and our meds, and make adjustments accordingly. Sometimes it will mean trying different meds and sometimes it will mean trying different doctors. I approach things with a " it is what it is " attitude and try to make the best of it. You'll find a lot of great ideas about how to cope on this site and a lot of support on the bad days. Don't let RA or the fear of meds control you. Try to be strong and take it on! *smile* IAN [ ] RA > Hello Everyone > I have just been diagnosed with RA and bo am I scared to take any pf > the medications after eradinga bout them/ > I am looking for some support as I am single and alone > Umm not sure what else to write here > Trish > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2006 Report Share Posted April 29, 2006 Hello Tawny Thanks for the message I dont get online much sos orry if I have taken so long replying. I'm on Prednisone 5 mg I have had panic attakcs in reaction to things like Zoloft and Prozac and now have the biggest fear of drugs It took 2 months for me to evens tart the Prednisone and i found a new Rheumatologist and he wants me tos tart taking methotrxate and folic acid Ive only just overcoem my fear and trust the Prednisone it does work but they are worried about long term effects of it I live in Australia inBrisbane and I dont quite understand the Health insurance in USA its so different ot here but I wonder a cure hasnt been found because of the money drug companies make from others miseries I ams o scared Tawny Hugs Trish tdianaok <tdianaok@...> wrote: Welcome Trish, Being diagnosed with RA is very overwhelming. This is a great place to be, so glad your here. What type of meds are you starting? It's very important to treat the RA with meds to stop the progression of the disease. If you need to chat, you can email me anytime, Tawny --- In , " sleepysea66 " <sleepysea66@...> wrote: > > Hello Everyone > I have just been diagnosed with RA and bo am I scared to take any pf > the medications after eradinga bout them/ > I am looking for some support as I am single and alone > Umm not sure what else to write here > Trish > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2006 Report Share Posted May 21, 2006 Hi there, I am taking Enbrel (plus others)and I would not be taking it if I read too much about the possible side effects. But without the treatments I don't dare think of how I would be feeling. I understand there is no cure for RA but the new biologics sure do slow down the process. Don't be scared it will only cause stress and then a flare up. Myself speaking don't believe in RA getting better by what you eat......This is a disease and needs treatments. Foods won't fix any other disease either. I do believe in eating healthy to keep the girlish figure...HEhEHEHE oh hold on, I lost that with much prednisone...... Just keep smiling and find a good doctor. pamelamary9 wrote: > I am 51, and was diagnosed with RA. It wasn't a surprize. Iam afraid > of the disease and afraid of the meds. So, I am not taking anything > now. It happened very fast. It seems within a 2 to 3 year span, my > hands totally changed. Sore, swollen, deformed, and me, well, > devastated. Pain is constant. My feet hurt in the morning. My entire > body upon waking in the morning feels like rigamortis has set in. > Funny word to use maybe, but the truth. I am trying, (and I > emphasize " trying " ) to cleanse my body of impurities through juicing, > lots of friuts and veggies (organic of course)vitamin C with > glucosamine. I hope that through healthier living, I can make all this > go away! But obviously, writing this post shows that I have doubts. > Can someone please tell me about the meds involved? I have heard awful > things about them, but don't know what is true and what's not. In > short, I need help. > Thank you > Pam > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2006 Report Share Posted July 26, 2006 The cheek pain can be from inflammation of the 3rd facial nerve, which is probably why the jaw hurts also. Even though you have RA, the inflammation is not limited to joints, it can be nerves and muscle also.l HTH Hugs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2006 Report Share Posted December 22, 2006 Hi Bonnie welcome! I am also new to the group I have been dx for 3 months. Marsha piggy2245 <elvis98542@...> wrote: Hi, my name is Bonnie and I also suffer from RA plus other medical problems. I thought getting into a support group would help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2007 Report Share Posted December 28, 2007 I am 30 years old and have been diagnosed with RA one year ago. It has been horrible. I have no energy and am sore all of the time. I am taking methotrexate and prednisone. This just does not seem to be working. I have a family with three small children. I really am desperate to find something that works. Any advise would be great! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2007 Report Share Posted December 28, 2007 I'm not a dr and I'm pretty new to RA but it happens that I had this convo with my rheumy just today. MTX seems to be working pretty well with me so far but I asked him about biologics. His response was that if I plateaued on the mtx and was not getting any better at any point or got worse, then he would start me on biologics (embrel, humira, etc) Maybe you should talk to your doctor about introducing biologics into the mix? Good luck! Kim > > I am 30 years old and have been diagnosed with RA one year ago. It > has been horrible. I have no energy and am sore all of the time. I am > taking methotrexate and prednisone. This just does not seem to be > working. I have a family with three small children. I really am > desperate to find something that works. Any advise would be great! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2007 Report Share Posted December 28, 2007 I'm sure you've told your doctor how much pain you're in. It seems like after a year, he should try something else. I have never been prescribed Prednisone, as my doctor only does that as a last resort. I have been on Methotrexate since being diagnosed, in conjunction with Plaquenil, and folic acid. I was also on Embrel for awhile, and now Remicade. I guess my suggestion is, if he isn't readily trying something else, bring it up to him and tell him that the current course of meds isn't doing the trick and you want to know what your options are. I have found that my doctor is always open to discussion on all matters concerning my illnesses. I will say this though, none of the drugs have done anything to ease the exhaustion/lack of energy. Part of that is due to the fact that I just don't sleep. He has prescribed Ambien, but I don't want to take it every night. Amy [ ] Re: RA I am 30 years old and have been diagnosed with RA one year ago. It has been horrible. I have no energy and am sore all of the time. I am taking methotrexate and prednisone. This just does not seem to be working. I have a family with three small children. I really am desperate to find something that works. Any advise would be great! ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2007 Report Share Posted December 28, 2007 I was diagnosed in may 06, and mtx did not work for me either was on predisone as well. Finally in Dec 06 I was put on enbrel which turned everything around. Due to insurance issues was off of it from the end of Jan 07 til recently a month ago. I am doing well on it. It is the best thing I can do for myself once a week. You need to talk to your rheumy tell him/her that what you are taking is not working for you and have him/her look into other drugs that will help you. -------------- Original message -------------- From: " cloudcoral " <cloudcoral@...> I am 30 years old and have been diagnosed with RA one year ago. It has been horrible. I have no energy and am sore all of the time. I am taking methotrexate and prednisone. This just does not seem to be working. I have a family with three small children. I really am desperate to find something that works. Any advise would be great! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2007 Report Share Posted December 28, 2007 > > I am 30 years old and have been diagnosed with RA one year ago. It > has been horrible. I have no energy and am sore all of the time. I am > taking methotrexate and prednisone. This just does not seem to be > working. I have a family with three small children. I really am > desperate to find something that works. Any advise would be great! > Hello. Just thought I'd suggest trying REMICAIDE infusions. You use it with Methotrexate. Admin. through IV. every 8 weeks. This is what turned my life around. I have 2 kids and wasn't able to care for them let alone dress myself. After 2 years of treatments I am 100% BETTER AND ON LOW DOSE OF PREDISONE AND METHOTREATE AND HAVE BEEN OFF THE REMICAIDE for over a year. This drug gave me and my family my life back!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2007 Report Share Posted December 28, 2007 > > I am 30 years old and have been diagnosed with RA one year ago. It > has been horrible. I have no energy and am sore all of the time. I am > taking methotrexate and prednisone. This just does not seem to be > working. I have a family with three small children. I really am > desperate to find something that works. Any advise would be great! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2007 Report Share Posted December 29, 2007 Hi... I started out around your age, a year or 2 older. I aslo had a small child close to 2 at the time. I was in between jobs so the care I got was not as aggressive as the one you have. That was close to 13 years ago. So I understand. We all understand. I have found a couple of sites below that talks about RA and the treatment options. There are many site out there on the subject. But these are a couple I wish I hadknown about and so if you get the chance take a look at some of the options. I think the johns-hopkins one lists types of meds and other treatments. Food allergies can aggravate RA also, stress will cause flares..being upset, arguments, try to keep an even mood and not get stressed out. You need to stay hydrated, get enough rest, warm baths sometimes help, get exercise ... aquatic RA exercises are best and easiest on the joints...controlling the inflammation all at the same time. I noticed a lot of times when I got the fever and chills I had allowed myself to go without enough water for my weight. Hang in there. http://www.hopkins-arthritis.org/arthritis-info/rheumatoid- arthritis/rheum_treat.html#new#new http://www.insidera.com/treatment/index.jsp " Treatments by Alan K. Matsumoto, M.D. , Joan Bathon, M.D. and Clifton O. Bingham III, M.D. While we strive to remain up to date regarding therapies for rheumatoid arthritis, you may find additional details or more current information within our " Hot News " section and also within the " Ask the Expert " Section. Rheumatoid arthritis is a chronic disorder for which there is no known cure. Fortunately in the last few years, a shift in strategy toward the earlier institution of disease modifying drugs and the availability of new classes of medications have greatly improved the outcomes that can be expected by most patients. The goal of treatment now aims toward achieving the lowest possible level of arthritis disease activity and remission if possible, the minimization of joint damage, and enhancing physical function and quality of life. The optimal treatment of RA requires a comprehensive program that combines medical, social, and emotional support for the patient. It is essential that the patient and the patient's family be educated about the nature and course of the disease. Strategies are all aimed at reducing pain and discomfort, preventing deformities and loss of joint function, and maintaining a productive and active life. Inflammation must be suppressed and mechanical and structural abnormalities corrected or compensated by assistive devices. Treatment options include medications, reduction of joint stress, physical and occupational therapy, and surgical intervention. Pharmacological Strategies NSAIDs Corticosteroids Methotrexate (Rheumatrex®, Trexall®) Hydroxychloroquine (Plaquenil ®) Sulfasalazine (Azulfidine®) Leflunomide (Arava®) Tumor Necrosis Factor Inhibitors-- etanercept (Enbrel®, adalimumab (Humira ®), and infliximab (Remicade®) T-cell Costimulatory Blocking Agents—abatacept (Orencia®) B cell Depleting Agents—rituximab (Rituxan®) Interleukin-1 (IL-1) Receptor Antagonist Therapy—anakinra (Kineret®) Intramuscular Gold Other Immunomodulatory and Cytotoxic agents-- azathioprine (Imuran®), cyclophosphamide, and cyclosporine A(Neoral®, Sandimmune®) Treatment during pregnancy Reduction of joint stress Surgical approaches ... " http://www.hopkins-arthritis.org/arthritis-info/rheumatoid- arthritis/rheum_treat.html#new#new blessings, Ebony -- RA 13 years, recent sicca syndrome, OA of hip joints, etc. presently in Georgia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2007 Report Share Posted December 29, 2007 Hello! I am 35 and have FMS/MPS/CFs and RA. It is a very difficult disease and what works for some will not work for others as our systems and how we react to pain differ so much. Have you ever been on any DMARDS such as Plaquenil? I currently take Plaquenil and Sulfasalazine. The sulfasalazine is supposed to try to help my immune system from attacking itself. I can honestly say I didnt think it was helping at all because I was in so much pain still. Yet I had to recently stop it for 3 months due to severe bronchitis and I was in total agony and could not walk at all (normally I have this issue but I can walk with my cane) I couldn't even do that! New symptoms and pain were in areas that it hadnt really been before. Now as much as I hate the Sulfasalazine, now that I am back on it I have noticed an improvement. I start a more aggressive drug in a few months. There are many on the board that take biologics so I'm sure they can give you some great feedback as well! Just know that you are not alone! Gentle Hugs stephanie --- cloudcoral <cloudcoral@...> wrote: > I am 30 years old and have been diagnosed with RA > one year ago. It > has been horrible. I have no energy and am sore all > of the time. I am > taking methotrexate and prednisone. This just does > not seem to be > working. I have a family with three small children. > I really am > desperate to find something that works. Any advise > would be great! > > ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Mobile. Try it now. http://mobile./;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2008 Report Share Posted February 4, 2008 Hi , Welcome to the group. Are you taking Methotrexate, Humara, or Enbrel? Heidi M On Feb 3, 2008 11:50 PM, brenda rondy <rondybrenda@...> wrote: > hi my name is brenda i have ra for 20yrs had 1 rheumy for about 15 yrs > was lucky to find another 1 right away he has tried several things some have > worked for a ehile some havent wright now we are waiting for an infection to > clear up. talk to other people about ra i think groups are good but if you > feel you want to talk one on one feel free to email me brenda > > --------------------------------- > 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 February 4, 2008 Report Share Posted February 4, 2008 > > > hi my name is brenda i have ra for 20yrs had 1 rheumy for about 15 yrs > > was lucky to find another 1 right away he has tried several things some have > > worked for a ehile some havent wright now we are waiting for an infection to > > clear up. talk to other people about ra i think groups are good but if you > > feel you want to talk one on one feel free to email me brenda > > > > --------------------------------- > > Be a better friend, newshound, and know-it-all with Mobile. Try it > > now. > > > hedi we have tried several things rituxin was last made me sick have had an infection for a year sosn as this clears up he wants to try metxtrate we will ee if it works when i ble to take it which i hope will be soon. talk to you later brenda > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2008 Report Share Posted June 17, 2008 Hi gang, I am 50 and I have had RA for 33 years, I stay active on a bicycle. I think Embrel is the best medicine going for RA. Cheers, Mike Quote Link to comment Share on other sites More sharing options...
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