I guess it went ok. I do know I like this RD. She was very nice, and seemed to listen to what I had to say. She did not "Umm Humm" or give me smartass remarks for replies to my questions or my answers. She wrote down most of what I said.
She said she knew both of my previous RD's and wanted to know why I did not stay with them and what treatments they had me on.
She asked what I was on now, told her Humira. She asked when I started it I told her Feb '06. She asked when my last bloodwork was I told her Feb '06. Then she looked up from my folder in the middle of writing, and looked shocked. Then she finished writing and got up and said before we go any further I am sending you off for blood work that way I will have the results back tomorrow.
So, I walked down the hall got nicely stuck, not JABBED!, and listened to the blood tech talk about her bad week and how her hubby decided for divorce over the weekend and kicked her outta the house, and how she was going to have to find somewhere to live, and no one will take her in. I just listened to her and told I was sorry to hear about it all. And then I told her I was afraid of needles and showed her my bruise from my last blood work I had and she said she would be gentle and she was. I made sure I told her about my bruise and how the nurse just JABBED me, so she would not take pent up anger out on my arm
Then I went back to my room, and I had to undress to just under-roos, and wear a paper gown. She checked me for "tigger points", she listened to me breath, she moved and flexed my joints, she even poked my in the abdomen and bladder.
I got dressed and we talked about Chronic Fatigue Syndrome and I asked her to take a look at my EBV tests to see if I could take my Humira this Saturday, and she tried to explain the results to me but I just did not grasp it. I only got this much of it... I do not have active EBV, I did have it at one time in my life, and EBV tests are not a really good test to do for CFS with people that have RA, because of the inflammation, and if your RA is not under control it will make the EBV tests high, because it is measuring inflammation in your organs and some other stuff I forgot about.
So she said I probably do not have Chronic Fatiuge Syndrome. I have Fibro. My RA is out of control and by the looks of my joints has been out of control for a long time and was not treated aggressive enough.
She said she wants me to go on Remicaid, since I have IC and that is probably what is helping me have bladder infections. And with Remicaid she can give me a dose of antibiotics before my infusion and it would help me to not get infections, like I would if I stayed on injectables.
She is having me wean off the pred. She said she did not want me on pred anymore. So, I have 100 5mg pred pills to wean me off within 2 weeks.
She said she was going to take me off Amitriptylin and put me just on Triptylin for my IC, as Amitriptylin makes you fat and the fat is hard to get off. I asked her "Just like the pred?" and she smiled and said yes.
Then I think that was all. I did write down a bunch of stuff but did not bother to give it to her as, the papers they gave me when I was filling them out said the first visit was mainly for diagnostic testing and to help her to learn about your case and the following visits she will begin treatments.
So, I just went along with it, and did not worry about it.
But she did say the burning in my shoulders blades was more than likely from my fibro.
So... I am suppose to get a call back within the week to set up my next appointment and then we will go from there.
Oh and she RXed me Darvacet, and I asked her if Darvacet was better than LorTabs and she smiled and said no and asked why. I told her because I have pain that LorTab 7.5 does not even help with and it just makes me sleep and when I wake up I am still in pain. She asked me when it was that I got this pain, I told her when I was weaning off pred and when I got down to 2.5mg and she said that if the Darvacet did not help with the pain while weaning off to call her and she was RX me something more.
I think she thought I was a pill popper but the weird smile and look on her face when I asked her if Darvacet was better than LorTabs. I explained to her I did not take nothing for my pain and if I did it was IBU, as I need to stay functional to watch my son. I also told her I still had LorTabs left over from my last wean off pred that I called my RD for when I could not take the pain and IBU was not cutting it, and He RXed me 15 of them which was to last 5 days, but I only took them for 2 days.
So... I guess it went ok. I really do like her.
Sorry so long... but I had to get it all out Oh and in combo with Remicaid, she is going to put me on Imuran. Since MTX made me worse, which she said she had patients say that to her as well, and I refused to go back on Arava.Joonie, I kinda have a good feeling about her. I'm glad that you actually like her, and I agree, your RA has been out of control for too long. Don't be afraid to call her, because I really think she's the kind that WILL listen to you! I WISH I COULD HUG YOU!!!!!!!!!!!!!!!!!!!!!!!!
woo Joonie we were getting very worried. Sounds like everything over all went pretty well. Are you wore out too? I think I like how your new dr talks, pretty smart
Yeah, I am sore and tired, and my shoulder blades are burning from sitting up for so long. Appt was at 2:30, got there at 2:00 did not get to back a room until after 3:00, and then the rest was with her and bloodwork, got to leave around 4 something and was home by 5:30. It is a 45 min drive. She was closer than I originally thought.
Well.....it looks like a big change for you all the way around. Sounds like a great doc Joonie, I'm happy for you. It'll be nice to see you feeling better.
I know the feeling, I had to go twice today! My neck and shoulders are on fire
I am glad you wrote in detail. Thanks and hugs to you!!!!
Joonie, I really think it was a good appt. She's taking an aggressive approach. The damage may not stop with Remicade but hopefully it will slow down. Don't hesitate to start Remicade infusions. It's hope for you. I take antibiotics on occassion because of urinary tract infections. Never had them before but the dmards and biologics cause them. All of us worry about you. Your new RD was very thorough and did all the right things. Biscuit, you're on a new journey and I just hope at the end you'll find the relief that you so deserve. LindyMo'Nana - Robaxin works fairly well for me when I take it. It sure works better than everything else I was given for my neck/back/should problem.
Oh and I have to get an TB test before my Remicaid.
She also said I had a lot of swelling in my knees. I was thinking... and that is with the pred, just think of what it is going to look like when I taper off.
Man there was something else, I had to say, but I forget now. It was something in one of the other posts I read that reminded me. Oh well... I guess I will post it when I remember again.
*sings* Can you feel the love tonight.... *hums the rest of the song*
Sounds like good news joonie! I have to agree with Katie in that I also have a really good feeling about her. Any doc that tries to keep their patient's off long term Prednisone is alright with me! Any idea when you'll be starting Remicade??Oh I remember what else she said. She asked me if I had Lupus, I told not that I knew of. Then she asked if my other RD's tested me for Lupus because I have the Butterfly mask, and I told yes and they never said if I did or did not. So, I was guessing I did not have it. And she said something about I could have it now and that she would test my blood for it. I swear all 3 of my RD's notice my face having that red butterfly mask as soon as they walk in the door. Hopefully she is not right and I do not have it.
Brisen - She said I could finish off my Humira I just got and then I am to come back and see her in 3 weeks, and discuss my options again, and then if I decide to do Remicaid it will be that following week.
Well Joonie, sounds like you've struck a good one at last. Now just be a good little bunny and look after yourself, stick to what she has advised, and good luck with the new meds. I sure hope you will be able to get some longer term relief.
joonie, she sounds like a gem! I know long drives are hard, but sometimes it is so worth it. I think she may be a keeper!
Thanks Jeanne
Oh and she threw in the kicker of, no more monthly co-pays for my Humira, as Remicaid would be seen as an in-office procedure and since I am on BC/BS and medicaid I would have no more co-pays for my treatments. Congrats June!!!! I am so happy to finally see you get the care and treatment you so need and so deserve. This RD really sounds like a keeper!!! I just can't tell you how happy this makes me. You deserve to have the best treatment possible and feel as good as you possibly can. Just think...this remicade is going to work for you and you will be able to get to swim meets and do all the things that you wish you could do with the kids. It really is a happy day!!!
Looks like we are going to be remicade buddies!!! And it is so much cheaper for you also!!! What a relief that has to be for you!!!
I am proud of you going and getting your blood drawn. You did just fantastic!!!
Wow, Joonie, that is good news. New RD sounds fab and just what you need. Sounds like she and you have an action plan in place.Great news. I hope you start to feel better very soon. I am curious why you haven't had bloodwork since Feb. 06???
Get some rest you had a long day. YAY!!!! Big hugs to you hun!SHE SOUNDS really nice. glad you were pleased. you mentioned fibro, how many tender points do you have, if you don;'t mind me asking? I also get burning in my shoulder blades from time to time.Joonie, I really hope this turns thing around for you. She sounds like an excelllant doctor and caring too. This is great news Joonie. This new doctor seems proactive and you so need someone working for you. Change is good....don't forget that. Sure sounds like you're headed in the right direction. Fantastic!
Joonie,
I've been wondering how your appointment was. I'm so glad you found an RD that you like and it sounds like she knows her stuff and truly wants to help you. Those types are hard to come by. Hopefully, this will the beginning of a big change for you with your RA.
Hugs,
Steph
I'm curious about the blood work thing too Joonie. I know you know enough about all this stuff to know you need to have blood work done every few months. Did your last doctor refuse to do it? WTG Joonie! I hope this is the RD that will turn your life around. I hope that the Remicade works as well for you as it does me. I spent 15 yrs. looking for something to control my RA and Remicade has given back a somewhat normal life. WOOHOO!!!!Hi Everyone, Thanks for the posts
As for the bloodwork I have not has since Feb '06. Well... That RD was forgetful, because he is getting old, he is in his mid 80's. I think he would look at my file and see the bloodwork I had in FEb '06 as my recent bloodwork, now that is my theory on it. As one time before he thought and actually remembered doing a physical exam on me, when he did not, he told me he would do my physical exam on my next visit since I was in so much pain, and he never did. BUT he "remembers" giving me one.
Reply to tender points ... she did not say I how many I had. But I can tell ya it was way more than I wanted to be pressed down on
Ahhh.... I am an internet addict... I cannot stay away from my laptop too long, unless I am not feeling well. So... no worries about me getting well and forgetting about my friends on here.
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