RD appt + Infusion = NEVER doing that again! | Arthritis Information

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Yep... I am NEVER having an infusion, a dexa scan, and an RD appt all in one day! I was sooo tired after my infusion, that I was even more of a goon when it came time to talk to the RD.   I forgot a lot of things I wanted to ask. My ass was kicked by the benedryl. The Remicade nurse pushed the benedryl to fast and I was all messed up! I actually kept doozing off while getting my infusion. I NEVER do that!

 
My BP was 102/60... pulse 64. Lowest it has been EVER! Remicade nurse was kinda worried about it all, but told her I was put on a new BP med by cardiologist and he said it was to help with the rapid pulse. She was going to go ask RD if she wanted to still give me my infusion, since Remicade can cause low BP, but after I told her that, she decided not to. I was just to tell her if I felt weird or anything like that while getting my infusion.
 
This RD appt was a complete bummer. I learned nothing new to my problems, same run around. She did say... she did not think the reflux in my legs is what could have caused the TIA. She said she believes it was a reaction to the Remicade and for me to keep taking the Aggronox the day of and after my infusion.
 
The DEXA scan showed -2.3. She said not bad, but not good either. She wants me off the pred as fast as my body will allow me to drop. So... starting tonight I drop down to 7mg and then a month from now drop another 1mg and so on every month after until I am off of it.
 
I complained about my hip pain again. Got x-rays took. She thinks it is the pred that is messing with my hip and causing me all the problems I am having. I do not even know what she was talking about. She just kept saying it was the pred causing me the pain. I told her the pain gets better when I upped the pred to 15mg over the weekend, she said it was still the pred. She felt the "hard area" and asked me to stretch my right leg out as far as it will go. She said it was the pred. SO.... it might be the pred.
 
She said the x-rays of my hips she took today showed osteopenia. And that she is starting me on Reclast once a month. I am to take the Fosamax, plus my 1600 of calcium supplements and as much calcium I can get into my diet. Because I am predisposed to osteoporisis because of my mommy's problems she has with her brittle bones from her by-pass surgery.
 
She also upped the MTX... I am to take 5 pills on Friday, instead of 3. She said 7 pills, and then she asked how the hair falling out was going, and I told better than I thought it would go, then she said just go up to 5 pills. And if my hair is still not falling out as much when I go back to her in 8 weeks, then she is upping me to 7 pills. She said that upping the MTX might help me not to flare as much and should reduce my need for the pred. She wants me to start taking my pred around 6am, instead of before I go to sleep at night.
 
It was really just a whole appt about prednisone talk 
 
I know there was more to the appt, other than the pred talk, but I cannot remember. I just remember the parts that made me fearful. Like taking away the dreaded pred... she is talking to a pred junkie here 
 
Damn! Now I do feel like a 3030 year old mummy!
 
I forgot to ask her about the MRIs of my hands and some of what my cardiologist said. She said she was going to get cardiologist to fax her my file.
 
There was a bright side to the appt... that she not once mentioned sticking a needle in any of my joints!
 
Oh and the stupid Remicade stamped figure in my chart had a lot of circles and X's on it again. *shakes head* Just think of what it would have looked like if I had not took the 20mg of pred and decreased every day. I would have hate to of seen that many circles and X's on that poor stamped figure again.
'
I guess that is all. If I remember anything else I will let ya'll know.
 
Oh moral of the loooong story... I thought about scheduling RD appts and infusions on the same day, but after today and 5 hours of sitting in her office, not including the hour drive each way... and how messed up my mind process is really messed up after an infusion... I think NEVER!
joonie2009-07-28 22:57:46Hmmmmmmmmm? Well I was not taking pred for six months. I think what ever pain the pred could cause me? Well I do not know if I can relate to that. I guess it is better still to take the extra MTX. Scince they sure need to do something to help you. So we may not understand that the pred is causing you pain. I do understand that I would rather see you get a handle on your RA. You have had way to much swelling. We need to take better care of you Jonnie. So I really hope it helps you. for someone w/ so many issues due to RA.... you would think your RD would be a little more aggressive w/ your selected treatments....
 
If I were you.... and obviously I am not..... I would opt to be bald rather than have as much discomfort as you have.....
 
vanity schmanity, joonie......... 
 
the hair loss stops..... take biotin (ask wantto) it helps w/that.... 
I did not care about the hair loss, my RD cared about it. I did not even bring up that I have a small amount of hair I lose every time I wash my hair or that I can see my scalp again from the front straight to the back. I told her I was all for upping the MTX when she asked, and she said how about 7 pills? I said sure. Then she looked at me and asked about my hair loss. I told her it was not as bad as I thought it was going to be.
 
I have been really bald from the Arava. I mean not even biotin helped it. Only thing that helped my hair loss on that was to stop it all together.
 
The problem I have with MTX is that it makes me hurt worse for a few days after I take my dose. It started out with my toes hurting, then my toes and feet, then my toes, feet, and ankles and so on. And now it is my whole body that hurts. It is not in my head. I take the MTX on Friday evening and come Saturday my toes will be hurting and the pain spreads and then come Wednesday the pain slowly goes away. Then the cycle starts all over again come Friday.
 
I told RD about it all a couple of times, and I agreed to tuff it out and I still am. I have not complained about the pain I get after taking the MTX for a couple of visits now, because I promised I would tuff it out.
 
Everyone else gets tired and/or sick after taking their MTX dose... me I get more pain. That is my only side effect other than the hair loss, which I do not see as a side effect, just expected.
 
I wonder if RD thinks it is a osteonecrosis? I did some research on what she might have meant by it was the pred and when I typed in hip pain and prednisone... it came up with osteonecrosis. She was more saying it was the pred causing my hip pain after the x-rays she took... where she said the osteopenia was visible on the x-rays.
 
Well... RDs office called this morning... she is sending me off for yet another nuclear bone scan for my right hip again. UGH! It will be on August 24th, I believe. Oh Joy! Not! Gotta waste someones day in order to go.
 
Probably that is what she meant. She probably wants the bone scan before she says the words damage or osteonecrosis. That way she can know how bad it is or if that is what it is for sure. Let us know. Good luck with the raise in MTX. Yeah... I just thought it was odd, that she never once mentioned why and how the pred was causing my hip pain. She just kept saying "oh no it is the pred causing this problem." Or "It is the pred. we have to get you off of it."
 
RD is aggressive with treatment, it is just that she is scared of me having another TIA and that I am allergic to sulfa... so I am limited in the meds I can take to help control the inflammation. The TIA is why it took her so long to finally up the Remicade another 100mg. She did make it to where I am getting the Remicade every 4 weeks now. So... lets see how that works. She still reminded me about going to the ER if I felt wierd after my infusion and to call her if I go to the ER.
 
She really does not think the Orencia or Rituxian would work as well for me as the Remicade can and does. I do not know why she thinks that, but that is what she says anyways.
Joonie, it sure sounds like you are having a rough time!  I am sorry about that.  I hope they find some answers with the bone scan.  Try not to worry too much about it, it may be nothing other than a marker.  I sure hope so anyway. 

I have such a love/hate relationship with pred.... love how it makes you feel when you feel bad/hate how it makes you feel when you have been on it a while and the things it does to your body.  I felt that about the MTX when I was on it too.  It sounds like its a good thing RD is having you come off of it. 

Take care Joonie, and I hope you find some peace.

Hope you get some answers!I am doing well. Thanks for all the well wishes. They seemed to have worked.
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