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Could my Orencia be mishandled?

I started on Orencia 8 months ago, and after 4 or 5 months I started to feel better but I never got back to how I felt prior to my last flare. Pain level at its lowest is a 4, and is generally around 5 or 6. I accepted this is my new normal, as with the exception of the few days before my infusion, (and around my menstrual cycle when I always flare) I have been able to get housework done, and interact with my kids which is really all I need. However this month my symptoms improved 0% since my infusion 2 weeks ago. It's like I never received an infusion at all.

My experience with my rheumatologist and treatment

My rheumatologist (since 2013) is fairly good about treatment, but he has also told me that my menstrual cycle doesn't affect anything (it does) and that it doesn't matter if I had Ehlers-Danlos (my orthopedic specialist told me about it, I am a 9/10 on the Beighton scale, but my rheumatologist said a geneticist needs to diagnose, and I need prior approval from my insurance which fights me on everything) I can't change rheumatologists because there are so few in my area, and I'm afraid of going through the hassle just to be stuck with someone worse. Luckily I'm moving next year.

I'm wondering if something may have happened with the solution
Anyway- I know solutions are only good for so long after they are mixed. My concern is that my doctor has another practice which his employees travel from - a good hour away - once a week to treat patients in my area. I'm wondering if the solution got too warm, or was prepared too soon since it went from working, to not working so quickly. I haven't had this experience before, but the only other infusion I tried was Actemra which kind of just fizzled out on me over time.

Seeking advice from those with infusion experience

I was wondering if anyone else that has had more experience with infusions knows if they can just suddenly go from working well, to not doing anything? My doctor said to take 10mg prednisone for a few days, but it really affects my anxiety disorder, and it is absolute hell to wean off it. Are there any other Corticosteroids that I can ask my doctor about? I just had an appointment during my last infusion, and of course said everything was good except right before my infusion. I jinxed myself. Thanks!

  1. Hi
    Thank you for reaching out. I am sorry to hear that you feel you never got back to how you felt prior to your last flare. If you haven't already done so I would recommend you have a conversation with your Rheumatologist about the continued symptoms. I was on Orencia for about 1 year 6 months. Unfortunately, I did not feel much relief from it. However, everyones body is different. Please keep us posted. Hoping for pain relief. Please continue to reach out us. Just keep swimming...Lynn Marie, "RheumatoidArthritis.net Team Member"

    1. I'm just curious to find out what happened. Have you had another infusion yet? Has your Dr given any information? My dr was talking about infusions for me at some point, but I've never had any. I hope you're feeling better!

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