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Medical Forum / Diseases and Disorders / Arthritis / July 2005Saw my RD today......long
Talk about being blessed! I have the best RD in the world!!! He is soooo easy to talk to about things and sooooo good about listening and working things out with his patients. A true patient advocate! I don't need to tell you all, that I was pretty nervous about this appointment as I wasn't sure whether he would want me to make a decision today or not regarding the enbrel and my infections. We talked it over in quite a bit of detail and his recommendation was that I stay on the enbrel at least until some of the newer meds coming down the pipeline are approved. His reasoning was that yes, I have been having a lot of infections, but he felt the infections were easier to deal with than the organ and joint damage I was experiencing before we started the enbrel, and the infections are reversible, the organ/joint damage is not! He looked back through my records and said since starting the Enbrel I have not had any of the pericarditis, iritis, scleritis, saliva gland inflammation, or other organ involvement I had been having and my joints seemed to have quieted down considerably so that I have had less steroid injections as well. He said we just need to be extra vigilant about watching for infections and treating them aggresively at the first sign of any. I actually felt a great deal of relief after talking all of this through with him. He will dictate a note informing my lung doctor about all of this and letting him know if he has further concerns to contact him directly and not wiegh me down with those types of decisions! I see the lung doctor next week, so hopefully he will have the note from the RD by then. We talked quite a bit also about the abatacept and he is anxious for it to be approved. Me too! He injected both thumbs at the base today as they have gotten so swollen and painful lately that I can hardly hold a book or anything with them. Ouch, those were some painful injections, but I am hopeful they will bring some quick relief. My RD said he really admires all of his patients because he said that those dealing with stuff like RA, Lupus, AS, etc are some of the toughest people he knows who endure a great deal and yet always seem to smile and laugh off things. He said they always teach him a thing or two and it is an honor for him to be able to treat all these people! Did I mention I love my RD and what a true blessing he is! I shared with him what that nurse told me in the hospital, and wow! I thought he was going to go right through the roof! He was so angry and said that nurse should not only be reported for such obvious unprofessionalism, that if it were up to him, she should also be fired! Yikes......he was really angry....never saw him get that angry before! Anyway, I am feeling a lot better about things and a lot less stressed out about things. Phew!!! Maybe tonight I can finally get some decent sleep!!! Sorry this is so long, and thanks to all of you for listening to and putting up with my whining these last few weeks!!! May each of you be pain free and as blessed as I am!!! Hugs! Donna G I can certainly see why you love this doctor. He's a real gem. Glad to hear you have him behind you and let's think "No Infections" in the future. Ann It sounds to me like you have a fantastic Rd. He is so understanding and compassionate. I am pleased too that he took seriously your comment regarding the nurse. I am glad that you won't have to go off enbrel. Once we find something that works we certainly do not want to "beg trouble" by changing/ Rose @}>->-- Being educated means that rather than fearing the unknown, one seeks to understand it. RB Please remove "Ima" to reply. Donna, God bless your RD. There aren't too many like him! Gwen > Talk about being blessed! I have the best RD in the world!!! He is > soooo easy to talk to about things and sooooo good about listening and [quoted text clipped - 56 lines] > > Donna G I'm rather new to this world - what is abatacept? The past couple of days is the first I have heard about it. So nice to hear about a good RD, or any doctor. Loujean >Talk about being blessed! I have the best RD in the world!!! He is >soooo easy to talk to about things and sooooo good about listening and [quoted text clipped - 56 lines] > >Donna G > Talk about being blessed! I have the best RD in the world!!! He is > soooo easy to talk to about things and sooooo good about listening and [quoted text clipped - 56 lines] > > Donna G Hi Donna G,,,, It took every word. I do not even know your doctor but he/she needs a hug and to be told that he/she is appreciated. I have gone back on Enbrel after 7 months of remission from the TB medicine. Good thinking on the new medicine ya know,,,,, KJ is in the trials for that stuff. May God bless you more than your RD. Harv :) Tell him next time you see him that I love him from afar. lol So, when do you think he is going to attack the nursing staff at that hospital... Duckie > Talk about being blessed! I have the best RD in the world!!! He is > soooo easy to talk to about things and sooooo good about listening and [quoted text clipped - 56 lines] > > Donna G  Signature_('> (_<_) _ _('< -quack (_<_) _ __('< *QUACK!* <_{__) _('< "|,,|_" (_<_) _('< "AFLAC!" (_<_) hey, I think I love your RD too and I've never met him! Let him know he's made lots of people happy by taking such good care of you. SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare If you whined these last few weeks I sure missed it. I can't imagine you whinning. I am so glad you got such a great RD. I hope all things work out for you well. You deserve a break and not a arm or leg. You take care and heal up get well and come back to us when you can. SignatureLove and hugs to all Good thoughts coming your way too. Squirrely Jo > Talk about being blessed! I have the best RD in the world!!! He is > soooo easy to talk to about things and sooooo good about listening and [quoted text clipped - 56 lines] > > Donna G Thanks everyone for your support during all of this. I soooooo appreciate it! And, SJ, thanks so much as usual for your thoughtfulness in sending me such a lovely card. You are just too much! Even in the midst of all your trials you still take the time out to send encouragement to others!!! What a blessing!!! Hugs! Donna G Your welcome Donna, you know how much this card ministry means to me. I just like to make others know that they are thought of too. SignatureLove and hugs to all Good thoughts coming your way too. Squirrely Jo > Thanks everyone for your support during all of this. I soooooo > appreciate it! [quoted text clipped - 7 lines] > > Donna G I'm really glad you have a wonderful RA it makes all the difference. I've been very fortunate with my doctor as well. Isn't it wonderful when they really listen to you. I've been having a pretty bad recovery from TKR. You may have seen my post on the message board. Got over most of the problems then got a new one five days ago. A dry hacking cough which begins with a tickling sensation in the throat and worse at night then during the day. Didn't sleep at all last night. Saw my primary care yesterday, she doesn't know what causing this. Took blood and throat samples. You're a real inspiration, I don't think I handle things half as well as you do. I hope someday I can offer support to this board like you do. Good luck with the Enbrel, I love it. I went back on it last week but have to go off it again because of this recent development. All the best. Elizabeth >I'm really glad you have a wonderful RA it makes all the difference. >I've been very fortunate with my doctor as well. Isn't it wonderful [quoted text clipped - 6 lines] >day. Didn't sleep at all last night. Saw my primary care yesterday, >she doesn't know what causing this. Took blood and throat samples. You might want to consider the possibility of GERD - reflux. If your primary care doesn't know, have her refer you to an endocrinologist. I think I spelled it right. I get a dry cough when I've eaten something that would give heartburn to some one else. It's worth a thought - fairly easily treated. I take Nexium every day and Gaviscon after meals and if I get a bit of heartburn which feels like a spot of pain in my ribs between my breasts. (Obviously, I'm having trouble describing it.) Good luck. >You're a real inspiration, I don't think I handle things half as well >as you do. I hope someday I can offer support to this board like you [quoted text clipped - 5 lines] >All the best. >Elizabeth Interesting, my primary care said that could be a possibility. I take protonix in the morning, my PCP said to take one in the evening as well. Last night I slept sitting up and was able to sleep fairly well. Hopefully I'll be feeling better soon. Thanks for your concern. Elizabeth Well, saw my lung doctor this past week as well, and he has agreed with the RD about staying on the enbrel to control the organ and joint damage and about being very aggressive with any signs of infection! Phew, I am soooooo relieved and after seeing both of them, now feel like a huge weight has been lifted off my shoulders!!! Actually, the lung doctor said he had got to thinking about me and my situation and realized that I didn't seem to bounce back as quickly as some of his patients do with regards to my breathing issues. He said after he thought about it a bit he realized that because I have so many other health issues feeding into things, and that often times those illnesses and the medications that go with them seem to slow down the gastric motility some and tend to make the absorption of certain meds (such as prednisone) much slower. He thinks that when I get sick and have a flare of my breathing issues, that the more important thing in treating me will be to get me in right away for IV meds either in his office or in the ER so that the meds will absorb faster and be more beneficial to me faster. He said he was sorry he hadn't thought about that sooner! I am just so thankful that I have a really good bunch of doctors who will not only listen to me, but will work with me in getting through these bumps in the road as they come. I do realize that it is truly a blessing to have these doctors as so many deal with doctors that don't listen and don't work with them. Thanks again to all of you for your support and for listening to me rant and whine! You all are always in my prayers and I wish you all pain free days and compassionate caring healthcare!!! Donna G > Well, saw my lung doctor this past week as well, and he has agreed with > the RD about staying on the enbrel to control the organ and joint damage [quoted text clipped - 31 lines] > > Donna G This sounds really good. At one point when my asthma was really bad and my daughters was bad as well, we were practically approved to admit ourselves to the hospital. If either of us even caught a cold our lungs would go south on us in record time. She has more or less outgrown hers. MTX and gastric surgery helped mine a huge amount. Jo Wow, sounds like the lung man is on to something. Duckie > Well, saw my lung doctor this past week as well, and he has agreed with > the RD about staying on the enbrel to control the organ and joint damage [quoted text clipped - 31 lines] > > Donna G Signature_('> (_<_) _ _('< -quack (_<_) _ __('< *QUACK!* <_{__) _('< "|,,|_" (_<_) _('< "AFLAC!" (_<_) I share your feeling of being blessed with your doctors, Donna. Just hang onto them and don't let either move or retire! Gwen > Well, saw my lung doctor this past week as well, and he has agreed with > the RD about staying on the enbrel to control the organ and joint damage [quoted text clipped - 31 lines] > > Donna G Sorry that this went to Athena's message - I meant to answer your comment on the cough. >>I'm really glad you have a wonderful RA it makes all the difference. >>I've been very fortunate with my doctor as well. Isn't it wonderful [quoted text clipped - 25 lines] >>All the best. >>Elizabeth {{{{{{{{{{{{Elizabeth}}}}}}}}}}}} So sorry to hear the recovery from your tkr has been so rough, but glad to hear things are doing better tn that regard now. Could your cough maybe the beginnig of bronchitis or due to allergies of some sort? Having a constant cough can be so exhausting and losing sleep with it is the pits. I sure hope your doctor can get to the bottom of it soon and get you to feeling better. Sure has been a long haul for you. I am thanful, though, that you have such a loving and caring husband to watch over you!!! Tell him hello! Elizabeth, you DO support this group just by sharing your experiences with us and allowing us to learn from what you have been through. Never underestimate the helpfullness of that!!! Wishing you a much, much, smoother time over the coming months in regards to your health!!! Healing hugs and prayers to you dear one! Donna G
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