Guest guest Posted June 7, 2003 Report Share Posted June 7, 2003 Hi all. I have been a lurker in this group for about a year now. Let me give you some background history of myself. My name is Benny. I'm 53 years old and was diagnosed with RA way back in 1986. My original rheumy put me on gold shots and prednisone. I went on to Arava and other medications that did not stop the progression of my arthritis.My new rhuemy put me on Remicade and now I am presently on Embrel, methotrexate, folic acid and motrin(for the occasional pain). Embrel has worked wonders for me. I am now back to working productively and semi-painfree. Now here's the reason I am finally making a message posting. Davy, I used to play guitar and piano but since the RA has deformed my hands I no longer play either one. I don't mean to bring you bad tidings but that's just my situation and now I'll have to live with it. My whole life evolved around creating and playing music and now I just dream about it. I suggest you see your rheumy regularly and start on a program. Don't delay as I did. There's so many different meds and different programs that you can try that weren't available to me in the old days. Keep a positive attitude. There are lots of knowledgable and informative people on this group and I know they'll help you anyway they can. Remember, think positive. Bennydavythomas <davy@...> wrote: My name is Davy . I am 32 years old. Last week, after months ofneck and shoulder pain, I was diagnosed with RA. This was not the bestnews, because I am a pianist. It hurts so bad to sit at the piano. Iam scared that I am going to hurt like this forever. My doc. put me on20 mg of Bextra a day and it has helped some, but playing still feelsimpossible. The only thing that really helps big time is lots ofIcyHot. Needless to say I reak of it:) I could really use any sugg. oradvise about all this. Just reading through the posts has reallyhelped. Thanks.DT Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2003 Report Share Posted June 7, 2003 Dear Davy: I am a professional musician, too, playing in a major symphony orchestra. I was diagnosed with RA a year ago. Luckily, it mainly affects my feet, but once in a while it does affect my hands, too. It took a year to find the right medication, but I am relatively pain free. Hang in there and keep looking until you find something that works. There was an interesting segment on Today about a week ago about Byron Janis who has also suffered with RA for much of his performing life. He recently released his first CD in 50 years! and has been able to play again since being on methotrexate. Feel free to email me directly. gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2003 Report Share Posted June 7, 2003 I'm sorry you have occasion to find this site but glad you are here given your circumstances. A summary of RA medicines with links to more information is at http://www.arthritisinsight.com/medical/meds/ . (The link defines NSAID and DMARD.) Bextra is an NSAID and you need a DMARD to slow down or stop oint damage. Minocycline is sometimes used in fairly new and mild RA. Plaquenil and Methotrexate are the next DMARDs to consider (mostly because of cost). Next comes Arava and then the really expensive ones, the biologics. Prednisone is listed under the "other medicines" because it is a corticosteroid anti-inflammatory. It usually acts much faster than the NSAIDs or DMARDs (days instead of several weeks or months). It will often stop the pain and permit you to resume almost normal functioning. As with all medicines there are some side effects. Weight gain and loss of bone density are perhaps the most common. I got RA in December 2001 and was started with 40 mg Prednisone daily. It took me about a year to get down to 20 mg after using Arava for about 6 months and Methotrexate for about 6 months. I was then started on Remicade (one of the biologics) and after about 4 months I was able to get off Prednisone for about six weeks of the eight week cycle of Remicade infusions. I suggest you call your doctor (I hope it is a rheumatologist), tell him/her how you feel, and ask about Prednisone or some other medications. You should also be on a DMARD. Also you may want to check the message board at http://www.arthritisinsight.com/cgi-bin/wsmbb/wsmbb.cgi?SB+KYWRJLLXVS/AKFCLKZQUN+config which is similar to this one. Let us know how you are doing. We want to be here to support and help you. Good luck and God bless. ----- Original Message ----- From: davythomas Rheumatoid Arthritis Sent: Thursday, June 05, 2003 12:54 PM Subject: newbiewithoutaclue My name is Davy . I am 32 years old. Last week, after months ofneck and shoulder pain, I was diagnosed with RA. This was not the bestnews, because I am a pianist. It hurts so bad to sit at the piano. Iam scared that I am going to hurt like this forever. My doc. put me on20 mg of Bextra a day and it has helped some, but playing still feelsimpossible. The only thing that really helps big time is lots ofIcyHot. Needless to say I reak of it:) I could really use any sugg. oradvise about all this. Just reading through the posts has reallyhelped. Thanks.DT Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2003 Report Share Posted June 7, 2003 Davy, I was diagnosed with RA in April, about 2 months ago. My Dr. in consultation with 2 Rhuemies, prescribed Prednisone 10mg and Plaquinil 200 mg daily and Methotrexate 10 mg weekly. Tonight was my third Metho dose. The Prednisone took 4 days to relieve enough pain and allow my joints to function almost normally. The only joints not affected yet are my hips, spine and jaw. My research and wisdom I have received in this group indicated that we need to IMMEDIATELY AND AGGRESSIVELY attack this disease ASAP as most deformities happen in the first 2 years of onset. I have a new nodule growing on my left thumb starting today. I can feel them when they start but after they enlarge they quit hurting for me. I have lost over 15 lbs in the past 60 days and have trouble with most anything at sometime or other durring the couse of a week. I strongly suggest you see a specialist or get your Dr. to start you on NSAIDS and DMARDS right now, like tomorrow. Our prayers are with you, God Bless and good luck, Jay > Dear Davy: > > I am a professional musician, too, playing in a major symphony orchestra. I > was diagnosed with RA a year ago. Luckily, it mainly affects my feet, but once > in a while it does affect my hands, too. It took a year to find the right > medication, but I am relatively pain free. Hang in there and keep looking until > you find something that works. > > There was an interesting segment on Today about a week ago about Byron Janis > who has also suffered with RA for much of his performing life. He recently > released his first CD in 50 years! and has been able to play again since being on > methotrexate. > > Feel free to email me directly. > > gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2003 Report Share Posted June 7, 2003 Hi all. I have just had my methatrexate increased to 25 mgs a week and 1600 mgs of anti-inflammotories but it doesn't seem to be doing much to combat the pain that i am feeling right now. Cheers, pauletteAt 19:14 7/06/03, you wrote: >Davy, > >I was diagnosed with RA in April, about 2 months ago. My Dr. in >consultation with 2 Rhuemies, prescribed Prednisone 10mg and >Plaquinil 200 mg daily and Methotrexate 10 mg weekly. Tonight was my >third Metho dose. > >The Prednisone took 4 days to relieve enough pain and allow my joints >to function almost normally. > >The only joints not affected yet are my hips, spine and jaw. > >My research and wisdom I have received in this group indicated that >we need to IMMEDIATELY AND AGGRESSIVELY attack this disease ASAP as >most deformities happen in the first 2 years of onset. > >I have a new nodule growing on my left thumb starting today. I can >feel them when they start but after they enlarge they quit hurting >for me. > >I have lost over 15 lbs in the past 60 days and have trouble with >most anything at sometime or other durring the couse of a week. > >I strongly suggest you see a specialist or get your Dr. to start you >on NSAIDS and DMARDS right now, like tomorrow. > >Our prayers are with you, God Bless and good luck, > >Jay > > > > Dear Davy: > > > > I am a professional musician, too, playing in a major symphony >orchestra. I > > was diagnosed with RA a year ago. Luckily, it mainly affects my >feet, but once > > in a while it does affect my hands, too. It took a year to find the >right > > medication, but I am relatively pain free. Hang in there and keep >looking until > > you find something that works. > > > > There was an interesting segment on Today about a week ago about >Byron Janis > > who has also suffered with RA for much of his performing life. He >recently > > released his first CD in 50 years! and has been able to play again >since being on > > methotrexate. > > > > Feel free to email me directly. > > > > gloria > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2003 Report Share Posted June 7, 2003 Dear Jay & Davy, I have been diagnosed with RA for about 4-5 years, maybe longer, for it began in my ribs. Fortunately the joints in my fingers have stopped swelling, though now it has decided to take up residence in my ankles and most other joints. I have learned, through many other things in my life, that a good spirit, and love and appreciation for even waking up daily are godsends. When I hurt badly, I do go to bed, but I don't dwell on it. Seems doctors kind of put us near the bottom of their list when it comes to help. My grandmother had it, my Father had it as well. Both of them received no help - but the one thing that did help them was their gusto for living and their gusto to work every muscle and bone in their body their could. My father would be helped down the alley of his home and back and did it all in horrid pain, and took it all in. I think an attitude of self-preservation, of self improvement, of self-love (that's #2 - to me - after your higher being) is the best. I do take meds, and do lie down, and of course I gripe to deaf ear.. and then it is over... no one wants to listen to a complainer - not even me! I did go to a physical therapist "the best in the field" -- who asked me, "And just what is the matter with you?" That was the last time I visited the therapist. I figured I could ask those same questions of myself. So, I write about it. My frustrations come out in words on the screen, on paper, and doctors have asked me to speak about it. It was, at one time, so bad, I could not longer write.. After "sucking it up" and continuing on, I did write again. I was in a wheelchair, gradually got rid of that, graduated to a cane, and the one day I walked with my cane around the block I will never forget! It was a gift from heaven! I now keep those 3 canes in my car truck -- they are my "just in case" canes. When I go into market with shopping carts I use them, far too many times I have fallen to my knees, and smiled! (What is one to do?) There are days I have to lift one leg out of the car and then the other... but I have decided I am GOING TO PREVAIL, not this monster which make us all so danged miserable. Sometimes in the midst of outrageous pain, I laugh, only because it releases endorphins of some sort and is nearly like a pain killer. I have a friend I have never seen in this group and we do laugh. We do grip. We all need a sounding board with someone WHO CARES AND UNDERSTANDS. Most often that is not your partner... Okay, I've said what I feel in my heart... and may God Bless Each of You. He is holding You in His hands gently.. ever so gently. Love him back. nJay Bishop <jbirdak@...> wrote: Davy,I was diagnosed with RA in April, about 2 months ago. My Dr. in consultation with 2 Rhuemies, prescribed Prednisone 10mg and Plaquinil 200 mg daily and Methotrexate 10 mg weekly. Tonight was my third Metho dose.The Prednisone took 4 days to relieve enough pain and allow my joints to function almost normally.The only joints not affected yet are my hips, spine and jaw.My research and wisdom I have received in this group indicated that we need to IMMEDIATELY AND AGGRESSIVELY attack this disease ASAP as most deformities happen in the first 2 years of onset.I have a new nodule growing on my left thumb starting today. I can feel them when they start but after they enlarge they quit hurting for me.I have lost over 15 lbs in the past 60 days and have trouble with most anything at sometime or other durring the couse of a week.I strongly suggest you see a specialist or get your Dr. to start you on NSAIDS and DMARDS right now, like tomorrow.Our prayers are with you, God Bless and good luck,Jay> Dear Davy:> > I am a professional musician, too, playing in a major symphony orchestra. I > was diagnosed with RA a year ago. Luckily, it mainly affects my feet, but once > in a while it does affect my hands, too. It took a year to find the right > medication, but I am relatively pain free. Hang in there and keep looking until > you find something that works. > > There was an interesting segment on Today about a week ago about Byron Janis > who has also suffered with RA for much of his performing life. He recently > released his first CD in 50 years! and has been able to play again since being on > methotrexate.> > Feel free to email me directly.> > gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2003 Report Share Posted June 30, 2003 I was cleaning out my files and ran across this again. I also monitor the message board at http://www.arthritisinsight.com/cgi-bin/wsmbb/wsmbb.cgi?SB+KYWRJLLXVS/AKFCLKZQUN+config and there is a keyboard musician who posts there by the name of iamshy. I think if you go to that board and post a message he will see it and maybe give you some suggestions or comfort. Good luck and God bless. ----- Original Message ----- From: davythomas Rheumatoid Arthritis Sent: Thursday, June 05, 2003 12:54 PM Subject: newbiewithoutaclue My name is Davy . I am 32 years old. Last week, after months ofneck and shoulder pain, I was diagnosed with RA. This was not the bestnews, because I am a pianist. It hurts so bad to sit at the piano. Iam scared that I am going to hurt like this forever. My doc. put me on20 mg of Bextra a day and it has helped some, but playing still feelsimpossible. The only thing that really helps big time is lots ofIcyHot. Needless to say I reak of it:) I could really use any sugg. oradvise about all this. Just reading through the posts has reallyhelped. Thanks.DT Quote Link to comment Share on other sites More sharing options...
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