Onboard with Orencia

I remember the timeline of my medications perfectly. The day I couldn’t get out of bed, my doctor put me on a high dose of prednisone. A few more after that, I had a diagnosis and my rheumatologist added pain medication. A month later my doctor talked to me seriously about Methotrexate. I knew what it was and I resisted for a good few weeks. I eventually gave in because the steroid just wasn’t cutting it and why not add a chemotherapy drug I saw my mother on all those years ago.

Waiting for the new treatment regimen to kick in

Those first weeks were rough. I guess my Rheumatoid Disease felt better but my body certainly did not. I had chills that didn’t correspond to my pill date, my eyelashes fell out and I was vomiting like nobody’s business. We tried different supplements and ways to take MTX but ultimately, the biggest change came when I switched to a self-injection. I had no more nausea and my hair started to grow back as it got used to the medication.

This was all fine and dandy except by itself, Methotrexate wasn’t doing enough to control my symptoms. I still experienced a massive amount of pain and swelling. It was time to add some other DMARDs (which I couldn’t tolerate, at all).

Cue the biologics

At the time of my diagnosis, there were some new ones on the market. I thankfully did not have to think of Rituxin or Remicade. Two I knew about already because my mum was on them. I am actually not sure why my doctor and I never considered them. I vaguely remember him saying he did not think they would work or they were not safe for me. I’m speculating here because we didn’t spend a great amount of time speaking about those two.

I started on Enbrel relatively quickly and within a few weeks, I felt awesome. I worked full time as a veterinary technician. I lowered my prednisone dose and I had energy, stamina, and mobility! Unfortunately, the medication plateaued and within a few months and it only controlled 60-ish% of my symptoms. Nope, sorry, not good enough. I’ve always been ambitious so can’t I expect that from my medications, too?

After Enbrel, I was on Humira for a spell but quickly moved onto the Orencia subcutaneous (or, under the skin) self-injections. They were alright, I got through an India trip with them, but, they just last throughout the month. I needed something more powerful to control my symptoms. Cue the IV infusion.

When a treatment feels effective

W-O-W.

The day after my first sit-down I went for a 4-hour hike. I felt SO GOOD. I felt NORMAL. Unfortunately, that amazing feel didn’t happen again. Don’t get me wrong, the infusion worked every month but I just didn’t feel that burst ever again. Theoretically, as the medication built up in my system, the more even-keeled the effects. I was okay with that as long as I felt well most of the time.

Over the years, I switched out from the Orencia because it plateaued and my rheumatologist and I wanted to see if something worked better. Nothing ever did.

As of now, Orencia is my lifelong partner and I’m happy with it. It’s not perfect but it has controlled my RA symptoms enough that I enjoy a relatively symptom-free life.

What are your experiences with Orencia? Did it work for you? Did it not?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (6)
  • Dorca
    5 months ago

    Hey I really enjoyed your story. Thanks for sharing it always helps to know you are not alone. I was diagnosed in 1998 and I have been through almost all biological and have not severe side affects, thank God.
    In 2002 or 2003 I was one of the trial members for Orencia and it kept me going for about 9 years before it stopped working. I am grateful for the years that it was some what under control. Today, i’m on Rituxan and i’m headed to my 65th year of life! Life is good and God is better. Keep up the good fight and do what is right for you. Godspeed

  • Monica Y. Sengupta moderator author
    5 months ago

    Hey Dorca!! Thank you so much for the lovely comment and sharing your story!

    I am so sorry the medications stop working for you. The same happens to me occasionally but I really hope it doesn’t with Orencia!

    Happy early Birthday!!! I am glad you are feeling good. I hope you have a great day.

    Thanks again for commenting!!! ~Monica

  • Jo J
    5 months ago

    Thank you for posting a story on a med that is giving you positive results. My course hasn’t been as long as others, but I am leaving Humira and Enbrel behind and starting Remicade this week. I’m ready!

  • Monica Y. Sengupta moderator author
    5 months ago

    Hey Jo J! Thanks so much for commenting on my article! I have my fingers crossed (as best as I can, lol) for you!

    Richard already shared some great information so I will just repeat what he said about hearing from you. If you are comfortable I would love to know how you are doing with the Remicade! ~Monica

  • Jo J
    5 months ago

    Thank you Richard and Monica. I had my first infusion today and it went well. I’m a bit fatigued tonight – but who knows how many factors are at play with that?

  • Richard Faust moderator
    5 months ago

    Hi Jo J. Wishing you the best with the Remicade. You may already have much of this information, but thought you might be interested in this overview from our editorial team: https://rheumatoidarthritis.net/treatment/remicade-side-effects-safety-review/. Feel free to keep us posted on how you are doing or with any questions. Richard (RheumatoidArthritis.net Team)

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