Yet Another Chapter in my RA Story. . . .

2 years post diagnosis. Had symptoms 5 years prior to diagnosis. Feet are a royal mess (That’s where this whole saga started.) I just started on Orencia (my third biologic.) I had a good run with Cimzia, about 4 months of almost total remission and then about 3 months ago things stated falling apart…again! Such is the roller-coaster ride that we are on. I just got the second “loading” infusion this week. I will return in 2 weeks for the third and after that monthly infusions. I am not seeing any relief yet. Here’s hoping that it kicks in SOON. I have some living yet to do and I’m tired of the couch! With that out of the way I’m thankful to be alive and still able to fight this monster that we here do battle with. If you have read any of my posts here you know that my attitude from the get-go has been one of “I will not give in.” That has not changed, nor will it! RA may (and does, sometimes) knock us down but to stay down is not an option. God bless us all and keep fighting!

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Comments

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  • Richard Faust moderator
    2 years ago

    Hi Dave,
    Sorry to hear that you are having these difficulties finding a treatment regimen, but glad to see the positive attitude. This article from one of our contributors looks at switching biologics: https://rheumatoidarthritis.net/living/switching-biologics/. Also, as you are probably aware, it can take a while for the new drug to fully go into effect.

    Thought you might also appreciate this article from one of our other contributors on how attitude is everything: https://rheumatoidarthritis.net/living/attitude-is-everything/. Wishing you the best and keep us posted on how you are doing. Richard (RheumatoidArthritis.net Team)

  • Dave author
    2 years ago

    Thanks Richard! I appreciate the encouraging words! I will return in the morning to the infusion center for my 3rd loading dose of Orencia. It seems that things are beginning to calm down. As I said in my original post, this is my 3rd biologic and I realize that most meds used to treat RA do take an extended period of time to take effect. I find it ironic that the only drug that I have had any experience with in this crazy ride that works immediately is Prenisone and we all know that the relief we get from it is an illusion!!! That is ok, though, I welcome the illusion when it is needed and the relief that it brings is sweet even though I know that it is not gonna last. As for the attitude thing, my motto, even a long time before RA has been this: “If there is nothing I can do about a situation thee is no use in me wasting good time and energy fretting and worrying over it and if there is something I can do I need to get busy and do it.” I’m doing what can to fight RA with the meds and lifestyle changes as much as is possible so that pretty much puts things out of my hands. I enjoy the good days and let the rest take care of itself. I know that some people have a harder time than others with keeping things in perspective. I am blessed with an eternally optimistic outlook by nature and I realize that not everyone has that in their make-up. We just have to stay in the fight and as you said as much as possible keep a positive attitude. Thanks again for the encouragement! Dave

  • enya
    2 years ago

    Hello Dave,
    Sorry to hear that things are not where you want them to be at the moment. You are so very right about the “roller-coaster ride” of this affliction. It started to me in my feet too, got to a point I could not walk without awful pain in the heel. So very quickly feet became a mess for me too. It all started changing when I went on Paddison program for RA. Did not really believe it, but was in so much pain and depressed that was ready to try anything at all. When I saw some improvement in pain, I went gung-ho with it. I was lucky and within 3 months my pain was under control and swelling started to go down. Only been on it for 1.5 years so far. One thing that worked in my favor was that I did not go on any of heavy RA drugs before the program. They are still sitting on a shelf as a reminder to stay firm. What really helped me was joining Paddison forum and talking to people who were doing it for much longer than me and had it much harder than me. I learned both courage, discipline, support and tons of useful information about alternatives to chemical treatments.
    Wishing you all the best in your fight for live and health.

  • Erin Rush moderator
    2 years ago

    Dave, I am so glad you refuse to let RA keep you down! While I am sorry Cimzia quit working for you, I am glad you are trying out another biologic. I, too, hope it kicks in and you start getting some relief from the pain very soon. I know RA may try to keep knocking you down, Dave, but I am happy that you never let it win. I suspect that no matter what happens, RA is not going to have the last word with you! I hope you are able to break up with your couch for the summer and get out and do some living very soon. Please feel free to keep us posted on your next infusion, if you would like. Keep fighting and thanks for sharing your positive spirit with the community! I’m so glad you’re a member. Best, Erin, RheumatoidArthritis.net Team Member.

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