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Accepting living with rheumatoid arthritis

Hi, I am a French 19 year old woman and I have been diagnosed with rheumatoid arthritis at age 7.
To tell you a bit about my story, it took me a year after my diagnosis before finding an amazing treatment that worked perfectly (roactemra). For about 6 years I lived a normal life thanks to this treatment, I could run, jump, do literally everything I wanted.
At age 14 my doctors told me my disease was on rest and it would be good to stop the treatment and see how it goes. A year later it all came back again. I got back to my treatment, but this time it didn't work as well. For 5 years now I have been unable to run, jump, stand or walk for a long time etc...
This year, the pains got worse, I did many exams and they all came back normal, my doctors are saying I "do not suffer from RA anymore" and they can't find any reason why I am constantly in pain.
For a few weeks now I decided to challenge myself and start running again (obviously progressively, since I haven't run for the past 6 years). But it went badly, to the point where my pains are unbearable and I can no longer walk without being in extreme pain.
I do not know how to get through all this, how to deal with the pain, and how to accept living a life where I am unable to do as I please.

If any of you have any tips to help me or if you want to share your story as well, feel free. I am with you in this <3

  1. I'm sorry you've been going through this.
    My experience with various drugs over the years is that SOMETIMES if I go off a drug for too long, then later start it again, it may not work. Then again, if I stay off them a longer stretch they sometimes work again. It's a crapshoot.
    Are you seeing a rheumatologist? One who understands sero-negative RA? [In your case, Juvenile RA, sero-negative]? If not, you might do well to start with that.
    Lesson here: Don't assume that because you're in remission that going off the drugs is a good idea. I've certainly been tempted to try it.....but the thought of going back to how things were is not something I'm able to deal with.

    1. Thank you for your reply, I have seen 3 rheumatologists (the first one was juvenile rheumatologist, second one in the adult department where I lived, and then I moved so I am seeing another one). After the negative serology results and the different MRIs and bloodtests that came back normal, my rheumatologist advised me to stop the roactemra and start the methotrexat because it seemed more appropriate. I have to say changing my treatment didn't change anything in my pains. Her guess is that my pains are caused by my pain perception that has been altered because I have suffered a lot as a kid (kind of like the phantom limb syndrome, it apparently happens a lot to people who have been through extreme pains and inflammations as children).
      However, it does not seem that simple and I am not sure I am completely in remission...
      I have tried many alternative ways to ease the pain, voltaren, hypnosis, electrostimulation, hot patches, doing more exercise (which is smth not really doable since I'm already in pain when I walk so imagine when I work out) etc...
      I agree with you though, I am definitely not ready to stop my treatment, there's too much to risk.
      I wonder if I should try to consult another rheumatologist but it is so hard to find a competent and involved one.

    2. Hi . Sorry so you are having these issues. As noted in this article from our contributor, Kelly Mack (full disclosure - I'm her husband), juvenile RA is significantly more likely to be seronegative: https://rheumatoidarthritis.net/living/compare-jia. Kelly was diagnosed at two years old, over 40 years ago with a very obvious case - both knees and hips replaced as a teenager and has used a wheelchair since her late teens. A few years ago her rheumatologist did a rheumatoid factor test just out of curiosity and it came back negative (she never had one 40 years ago).
      I also want to follow-up on what mentioned about interleuken-6 inhibitors. As Kelly notes in this other article, research has found that IL-6 and IL-1 are primary drivers of inflammation in those with juvenile RA and thus the biologics that inhibit them perform better: https://rheumatoidarthritis.net/living/longterm-biologic-use-jia. In Kelly's case, she started Kevzara a few years ago and it has been the first drug to bring her CRP into the normal range in her life. Of course, every person and case is different, but this may be worth a discussion with your doctor. Wishing you the best and please feel free to keep us posted on how you are doing. Richard (RheumatoidArthritis.net Team)

  2. Darn, the system gobbled up my post, so I'll try to rewrite. [Lesson to all: copy your message before you hit "post reply."]
    If you're not seeing a board certified rheumatologist for Junvenile sero-negative RA, you might want to set up an appointment.
    Since the anti-IL-6 worked for you before, you might consider sarilumab (Kevzara®).
    Lesson learned: unless you're prepared to suffer all manner of aches and pains by going on a DMARD/biologic that has been working for you, do not try going off the drug.
    I think we all at some point think we'd like to see if we REALLY need the drug. Too much to risk.


    1. Yes, this happened to me. I wrote replies to two different people and they were both posted, but incomplete and cut off. (Of course, neither time did I save them which I usually do; Murphy's Law? 😊)
      I am new to this site, so I was really embarrassed and thought I did something wrong and I've been afraid to write anything else since. I hope it will be fixed soon and then maybe I will try again by posting my introduction and story.
      I would really appreciate it if you would let me know if it's been fixed. Thanks so much. I'm glad you posted about this issue. I don't feel so embarrassed anymore.


      Joanie

    2. Yes thanks for letting me know it happened to you as well. The bug is still being worked out but I will send an update. You didn't do anything wrong! 😀

      In the meantime, since I don't know when it will be fixed, you could type out your comment and your introduction and just copy it before you hit submit. This way if for some reason the comment doesn't go through, you still have everything you wrote and can post again (hopefully that doesn't even happen).

      But absolutely nothing done wrong on your end. We are so happy to have you here. It's a great group who is knowledgeable and supportive. Welcome! - Reggie, RheumatoidArthritis.net Team Member

  3. 😉

    1. I contacted the site administrators to let them know of your concern.

  4. Look at www.lowdosenaltrexone.org. This helped me enormously.

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