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Question for those who have been on or are...

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Kayleen Elliott

Posted Friday, November 06, 2009 8:32 PM

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Last Login: Friday, November 06, 2009 8:32 PM
Posts: 182, Visits: 221

I had my first infusion almost a week ago. It went well, with no apparent reactions. I took Benedryl and 650mg Tylenol per my drs instructions. For the first few days after the infusion, I noticed only that I felt kind of wiped-out.

Since I've had RA for so long (25 years) I know when something is different. What I'm noticing now is that I'm having periods of time where I feel really good, followed by periods where I feel "flarey". This sounds like regular old RA, of course, but it's not my usual pattern. Something's different -- it's difficult for me to put my finger on it. For now, the best I can do is to say that my usual high's are higher and my lows are lower. As in, if I am going to have a high, I'm going to feel better then I normally do. And vice versa. I have nausea that I don't normally have, also, which I know is a possible side effect of Orencia. The highs will pop up out of nowhere but are infrequent and short-lived, so I'm having more lows then highs.

I'm not liking this because basically I'm just feeling sicker. Things were bad enough the way the were -- I didn't need for them to get any worse.

Has anybody else on Orencia (or any biologic, come to think of it) felt this way? Better yet, does anyone have a layperson's explanation for what is going on in my body? As in, this is actually a good thing and here's why. Thanks in advance for any ideas.

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Aimee (Aims)

Posted Saturday, November 07, 2009 8:18 AM

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Kayleen,
This is a great topic and one that I thought about posting. I am due to start Ritutan on the 19th and would like to know what to expect. You can research side effects but I would like to hear from people that have taken the meds and know what happened to them. I would like to know so I would know how to prepare. We live 2 1/2 hours away from where I will recieve my infusion and we don't know if we should spend the night in Nashville just in case I don't do well or not.

I know it has to be un-nerving for you not knowing if what you are feeling is normal or not. I hope your good days become more than your bad days.

As always, sent with warm hugs and love,
Aims

.8cc mtx, Humira, folic acid, prednisone, trazadone, ultrum 300, lortab 10, cymbalta, lasix, hctz and cal w/ vit-d

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SusanOnWhidbey

Posted Saturday, November 07, 2009 10:43 AM

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Last Login: Today @ 2:10 PM
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[/size][size=4]Kayleen, having failed Enbrel and Humira, I went to Orencia. There was no change for three months that I could identify. I told the rheumy it was time to try something else, but he urged me to stick with it one more time. I agreed - only because I have so much faith in this man who walks on water. Well, that next time was the trick!

Apparently others have had the same experience with having to give it extra time. But I tell you that now it's like an army of bullfighters stationed at every joint, waving away the monster with their red capes.

So please hang in there for several months. I so hope that the matadors will soon start doing their thing for you too!

SusanOnWhidbey

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