My RD is Disappointed | Arthritis Information

Well... I had my first RD visit since having the stroke and all the testing that came along with it.

I was sitting there and she came in asked how my pain was doing and then told me to get undressed and then she done the joint check and marked it on the little remicade diagram. Then she said she would be back. Well... she came back told me all the changes to my meds she was doing and then told me she would be right back.

Then I waited and waited and then heard her go into another room with a patient. It was an older lady who did not want her joint aspirated and I guess she overwhelmed my RD.

So then her assitant came in handed me my RXs and my blood work paper and told me I could leave. I was like but she said she would be back and I was not thru talking to her. So she told RD what I said and then she said she would be back when she got done aspirating that older ladies joint.

15 mins later... she came in and asked what I needed to talk to her about then I told her about me having my stroke and all. And she just looked shocked. I told her I tried to get GP's office to fax my file to her but they have not yet. I even had RD's receptionist to call them and ask them to fax my file to her while I was waiting in the lobby area. But they did not. *rolls eyes* I even called Tuesday to give GP's receptionist the fax # so she could fax it to my RD. but they did not.

Anyways...

After I told her all I knew, she looked at me and said she was disappointed, but not with me but with how the situtation is looking. She said I responded nice to the Remicade, but with what all that I told her she cannot let me keep taking the Remicade.

She is not sure if it was the remicade that caused me to have high BP, but from the looks of my Remicade file... it looks that way.

I told her about the nodules on my thyroid, and she said that would cause it too, but only if my thyroid bloodwork came back not good. Which I told her that GP said the thyroid bloodwork was good.

She looked more disappointed than me. She said she does not know what to do.

SO... she said she was going to call my GP and talk to him and see what he thinks about it all. She is going to talk to another RD about the situation. Then she after the thyroid Dr faxes them their report and all. She will make a decision.

She said if no Remicade then she will switch me to Orencia, but I will have to wait 8 weeks before I can start it. She said that was disappointing as well, because I will revert back. SHe said she is hoping that I will respond to Orencia like I did Remicade.

I go back to her on May 5th. That is when she will make the decision on what to do.

Oh and she is going to wean me off the prednisone, starting when I go back. I did not have a chance to mention the weaning to her, she brought it up. She had the same thoughts I had that being on 10mg and I still had swelling, that it was not helping me. PLUS, she said the pred could be causing some of my side effects to go haywire.

Oh and she put me on Ultram ER and Ultracet for my pain. I told her I was out of Darvocet, but did not want anymore, but something else. SO she gave me those. SHe said I can take up to 8 Ultracets a day.

She upped my Nortriptyline to 50mg. I have to do a week of 40mg and then the next week 50mg and hold.

She said most of my odd pains were fibro. And my right leg & hip area is fibro. So I am going with it is fibro. Probably not fibro, but this is the same pain I had when I was told by the ER in Ocotober that it was muscle spasms and RA.

She just kept sighing and saying how disappointed she was. I think it hurt her feelings more than it did mine. But of course, I had already figured she was taking me off.

I asked her if I could stay on the Remicade because the BP meds was controlling me, and she said no, that high BP is a side effect of the Remicade and not a good one.

I asked her if it turns out that it is the nodules on my thyroid causing my High BP and rapid pulse and it gets corrected without BP pills could I stay on Remicade, and she said that is something she is hoping for, but from the way my BP & pulse slowly raised over infusions, starting from normal to pre-pre hypertension, she does not think that is the case, but she could be wrong.

Soo... that is all I can remember in a nutshell.

So... looks like more pain, problems, and stiffness in my near future. Because she wants me off the pred before I start Orencia, or at least down pass 5mg, she said she is aiming for 1.5mgs of pred, before I start Orencia.

Good LUck and God Bless You Joonie! you are trooper and an example to all of us. wonderwoman

The only silver lining to that whole appointment is that you can tell your RD really cares about you. That's a good thing. That means she is going to do a lot of thinking about what she can do next to treat you. She has already told you she will be putting her head together with other doctor's to try and come up with a brain storm.

I'm sorry you are having such a bad time with everything. Sending prayers up that taking you off the Remicade and replacing it with Orencia will do the trick for you and cure you of the other ills you suffered due to the Remicade.

Thanks for the luck & blessings wonderwoman!

Oh and I forgot.... I was sooooooooo close.... She had wrote in my Remicade file that I was to be bumped up to 400mg of Remicade my next infusion, that was before I told her about the stroke and all. She was thinking that me on 400mg every 6 weeks would have gotten the ole RA under more control, and adding an anti-inflammatory to the mix. I was excited, but then I had to tell her about the stroke and all... and that went out the window.

She asked me why I did not tell her all of what I told before she wrote in my Remicade file, I told her because she was talking and I am not one to interrupt people when they are talking, that I was brought up that it was rude. She told me for now on if she is talking and I have something to say just interrupt her. I was like ok next time I will.

Well... my knees are throbbing and my back too from all the sitting up I done today. So I am going to go lay down in my bed and watch some tv and take a pain pill.
((((((((JOONIE)))))))))I just googled Remicade side effects and I did not see this one before - hernia (bulge of tissue through the wall of the abdomen).

Yeah... that is a rare side effect, and I noticed about a month ago, that I had this knot just above my belly button, and mentioned it to my GP when I went to him. He pressed on it and said it was soft tissue and would go away. It does not hurt... it just feels weird.

So... I guess when I go back to my RD I should mention that "knot" above my belly button to her.

I just figured it was caused by the way I raise up out of bed... it is kind of a strain on my stomach muscle how I raise up.

I am just a hot mess. Hi Joonie, how do you cope, I really admire you, you still seem upbeat and ambitious for your treatment, it is good to see and is an inspiration for others, I will keep praying Joonie.

Could that mean that the Remicade caused the stroke, or am I way off the mark? Hugs Janie.
Well... I told RD of GP's "theory", that my BP spiked high and caused me to have the stroke, and she agreed that could happen, but was not sold on that "theory".

She thinks the Remicade is causing me to have High BP, because of how it elevated after each infusion. And before starting Remicade my BP was fine, but my pulse was a little high.

So... if you think the way RD is... then yes, the Remicade aided in me having a stroke.

Oh and she asked what all GP done in testing so far and when I got to the renal ultrasound, she asked why he done that one, I told her because I was complaining of my wright kidney area throbbing and having sharp pains sometimes. And she said that was one of the no good side effects of remicade. I told her no, I had that pain before starting remicade or even seeing her. I had that pain for a while and was told it was IC or over active bladder, by a urologist. She asked if it still felt like that, which is no... it went away when GP tapped me there, and it came back a day later, but it has not returned since having the stroke. She said... hummm.... if it comes back to tell her.

Oh and she got to see my saquatch legs LMAO! Man... I knew I should have tried to shave this morning. I thought about it, but my right leg was hurting and standing on it is painful and makes my muscles in my right leg feel tense and then it stiffens up, makes it hard to walk. I am sure she has seen worse hairier legs hehehehe!!
Aw, Joonie, you do seem to get more than your share of troubles. I hope the orencia works out.
Aw Joonie, if it's not one thing, it's another...and another.... Hang in there sweetie, it sounds like you have a good rd, it's just too bad it gets so hard for one doc to relay info to the other docs. All we can do is keep on goin'...

Hugs

Deb
Sorry you have to be in limbo for awhile, but hopefully you will feel better on Orencia! It can't possibly cause any more side effects than Remicade did for you, can it???? I'm glad your RD did spend more time with you, and I'm glad she thinks a lot of this was from Remicade - now that you are off it, you shouldn't have to worry stuff like that will happen again. Thanks for the prayers everyone, they are greatly appreciated.

Yeah, I know. But I REALLY liked how Remicade fixed me up after I got increased to 300mg. I mean I was able to use my hands and even write readable words and my writing did not even look like chicken scratch for once... it looked almost like my old handwriting. I have not been able to write like my old handwriting in years, because of my fingers being swelled and not being able to hold a pen because of how my fingers would not wrap around a pen or how they would hurt when I applied pressure to grip the pen.

I am just not sure which body part returning to hurting is going to drive me to the looney bin. The increased pain I am just not looking forward to. My pain was actually getting better.

Oh well... no need to dwell on it.

It is like when you get use to something not being like it was and then all of a sudden it changes back to how it was and then you freak a little because you do not want to go back to the old when you had gotten use to the new. But then you slowly accept going back to the old and just miss the new.

Gosh Joonie. I'm real sorry to hear that about the Remicade. I'm sure you're disappointed too to be taken off of something that was finally working. I'm real glad you insisted on waiting on the doctor and talking to her. I really wish we could get our doctors to communicate a little better. So many of these things can be connected together.

I've heard talk of a health care record system that links all the records together.....but I can't remember what it was exactly. I know these doctors are busy but what if you had just trusted your other doctor had told your RD (Like he said he would!) and then you went for another infusion? You might would have risked an even more damaging stroke. It's really dangerous.

Hope you're feeling better soon Joonie.
I was going to have to reschedule my Remicade infusion anyways... because the Remicade infusion was on the same day and at the same time as my Thyroid doctor appt, next monday.

It was kinda funny... RD asked when my next infusion was I told her Monday, and she said Oh No... we cannot be doing that. Then I was like yeah, I was going to reschedule it today because it is on the same day as my Thyroid doctor appt. She said ok good, but do not reschedule.
Joonie,
I'm glad your RD is being cautious. She sounds like a good doctor.
Sending healing thoughts in your direction.
Joonie,
You are in my prayers. Life with RA is so full of ups and downs. I recently had to stop taking Orencia, because of worsening asthma. I switched back to Humira and it is not working very well. Your post reminded me to check my BP, because every time I go on an anti-tnf my bp goes up. Well, it was elevated I will call my GP on Monday to increase my bp med. I hope the Orencia works for you. It was very helpful for me although it seems to take a longer period of time to get the full effect (like a year).
Thanks for the prayers & healing thoughts.

I am sorry to hear that about you having to go off Orencia, Isell44. I know what you mean about the Humira not working as well. I was on Humira before being put on Remicade, and the Remicade was much more effective on controlling the ole RA.

I wonder why biologicals raise blood pressure? Might have to go look that one up.

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