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53 year old with JRA and disease progression

I am 53 years old and have had JRA since I was 2 years old. Over the years, I have gradually lost physical functioning (going from being able to do pivot transfers independently to now having to use a walker with the help of a personal care attendant). Until the last few months, I have been able to function fairly well and taking Humera had kept my symptoms in check. Recently, however, my pain has increased significantly to the point where now I find it very difficult to get out of bed in the morning, even with the use of my walker. I have severe hip deterioration in both hips with the left hip being worse. I am afraid to bear weight on my left hip because the hip feels as if it is going to give out. I have seen an orthopedic surgeon but am not a candidate for surgery. The surgeon told me I have no femoral cap surrounding my hip joint. I am concerned about the progression of my disease and the possibility of falling. Is there anyone on this site who is similar in age to myself and with an early onset of the disease who can share information with me?

  1. Hi Valerie, I was also diagnosed at age two with JRA and have had an aggressive progression. I'm now 39 years old. In my case, I use a motorized wheelchair to get around (can walk with a walker short distances, even shorter without). In previous years I had both my knees and hips replaced. Few questions for you about your note. What has your rheumatologist said about your increase in pain and difficulty getting around? Any room for adjusting medications? Really understand the feeling when you describe your hip--I have been there. Would it be possible to get a second opinion about surgery? You are right to be concerned about your disease progress and preventing falling (I have been there too as I broke my leg in a fall, thankfully didn't require surgery). Wondering if it may help to consult with a physical therapist and or occupational therapist to see if any therapy can help and/or identifying falling hazards that can be avoided. Glad you reached out as it helps to talk with others in similar situations. Best, Kelly

    1. Dear Kelly:

      Yes, I do see a rheumatologist regularly and have an appointment this Friday to see him to discuss further pain management options. Currently I take Humera every other week, 20 mg. and ibuprofen twice daily, 600 mg. each dose. I use a power wheelchair for mobility except for transfers and brief walking exercise in which case I use a platform walker. My difficulty is that I am having increasing pain, even when using a walker, especially when getting out of the bed in the morning. I have even considered using a hoyer lift to get out of bed in the morning but am hesitant to take this step due to fear of losing muscle tone. As far as getting a second opinion from an orthopedic surgeon, I am short in stature and have brittle bones, so these are complicating factors. I have seen various surgeons over the years and they do not recommend surgery, saying it's possible surgery could make my situation even worse, less stable.

      Thank you.

      Valerie

      1. Valerie, How did your appointment go? Any guidance from the doctor on pain management? Definitely understand your concerns about losing muscle strength/tone if you start using a lift to assist with getting up. It's a difficult balance--pain versus strength. Do you think a physical therapist could help with guidance for maintaining your strength if you started using the lift to decrease your pain? Best, Kelly

    2. Hello Valerie, My name is Tammy and I was also diagnosed at the age of 2. I am 26 years old now. It started in my ankles and knees, as I got older my JRA started to move to other joints. My hips are affected because my knees are bent at a angle and I walk on my toes to be able to stand up straight. And because of that my hips are affected. I am working on getting both knees replaced. I'm nerviest about the surgery. Its is hard to live with arthritis for anyone especially when your a child. I have been taking Humera for many years, and before that i used embrel. My doctor said to me sometimes the body can become immune to the medication. That is what happened to me my body was immune to embrel so Doctor put me on Humera. I'm using a cane now because some days I'm in a lot of pain and other days the pain is manageable. I also use the came for stability when i walk and stand. I use to thing that I shouldn't use the came because I am to young. I finally realized that using the cane is better for my pain and i can walk further and better. I was wondering if there is anything that I should know because i get my knee surgery?
      Thank you for your time.

      Thanks,
      Tammy

      1. Hi Tammy, I have a similar story as yours and had total knee and hip replacements when I was ages 15-16 because of severe joint damage. The surgeries can be great for improving your pain and motion, but the recovery can be difficult. My recommendation is to strengthen your body as much as possible before the surgery with physical therapy. The stronger you are before surgery, the better for the recovery. Additionally, during the recovery do all the PT you can manage. It can be hard and exhausting, but the earlier you get moving the better the results. Happy to answer any other questions you may have. Best, Kelly (RheumatoidArthritis.net Team)

    3. Thank you Kelly for the response. My rheumatologist has placed me on a short-term treatment of 20 mg of prednisone to deal with my severe pain issues. He is also going to consider switching me from Humera to another biologic as he thinks the Humera may have lost its efficacy. He wants to find one that will also be effective against my ulcerative colitis. I've had PT as recently as this fall and it may be helpful again once I get this pain under control.

      1. Hi Valerie, Checking in to see how you are doing. Did the prednisone help with the pain? Is the Humira working yet? Hope you are feeling better! Best, Kelly (RA.net moderator)

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