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RA treatment with Actemra

Hi, I joined this forum as I’m very frustrated with my current condition. I have had RA now for the last 20 years, was comfortably treated on sulfasalazine but started an allergic reaction and got Lichen Planus. Since then I have I have tried Zeljahns, Remicade infusions, Himira for a year and most recently Orencia. Each of them work for a bit but then I get side effects and when we do MRIs, there is quite a lot of deterioration in my joints. I was on Orencia for the last six months and although my ERP and C-reactive numbers were down when he recently did an MRI of my hand, there was significant deterioration due to Tenosynovitis. I still had a lot of pain walking. My knees hurt now my left shoulder hurts. He took me off a Orencia and is asking me to start at Actemra. This would be my third Biologics and truly feel this is a really strong one and am
Scared to try it . however, I have to do some thing because I am in so much pain and most recently my shoulder is starting to hurt now Advil helps a little bit, but even that isn’t completely taking the pain away I would love to hear anyone’s experience with that Actemra and is it really true there are a lot of deaths on it. Thanks in advance.

  1. I so understand your frustration. I know we often feel like a science experiment as doctors try to find out what will work. I have used six biologic medications over the last 22 years. Two of those I used for 16 years; the others were a series of short-term failures. The other four were a string of failed attempts to find the proper medication. I tell you that so you know your experience is not unusual.

    Unfortunately, at this point in our understanding of how humans react to biologic medications, no test says one medication should work more than others. This leads to a kind of trial-and-error approach to prescribing.

    I know what you have been through is awful, but when one of these hits, it is a great outcome. I suggest you have a frank discussion with your doctor about where she sees this process going. Is there a process of elimination she uses to determine which medication order she will use?

    As I went along, I always asked my doctor at each appointment what to do next. He was forthright with his answers. We will do this, then that, then this, and so on. At the very least, that gave me a road map, and at least that was incredibly helpful. Perhaps it would help you?

    Whatever the outcome, I hope you can find some answers and feel better about the process of medication selection.

    1. Unfortunately RA is a trial and error illness. It took my doctors 20 years and over 12 different biologics before they finally found the right key for my body's particular lock. For me it was a lesser used bio called Kineret, but for each person it depends on what part of their immune system is causing their RA and unfortunately, as of now, there's no test to determine that. So we keep trying meds until one works, hopefully Actemra will be the right one for you but if not, we will be here with you for the whole journey! You are not alone. Keep on keepin' on, DPM

      1. @RA Sam How awesome that you have had such great results. My brother had the same reaction to Enbrel for his PsA. He has been in remission, thanks to Enbrel, for several years now. I hope it continues to be effective for you for a long time to come. Warm wishes. - Lori (Team Member)

      2. Hi . I hope prednisone brings you some relief while you wait for your appointment and a new biologic. This new doctor sounds wonderful. Keep us posted if you don't mind. We will be thinking of you. - Lori (Team Member)

    2. that’s awesome.,thnks for the encouragement!

      1. I completely feel you! It's so nerve-racking having to go from medication to medication. I struggle with my lack of understanding of what these meds are made up of and what the long-term effects of them are BUT Actemra works for me. It's the only one that's worked for me in the past 11 years. I've tried at-home injections and monthly infusions and they both have had the most impact on me. It's not perfect but it works for me and I know many other people have had great success with Actemra.

        Best of luck my friend. You're not alone!


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