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53 year old with JRA and disease progression

  • By Valerie9968

    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?

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  • By Kelly Mack Moderator

    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

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  • By Valerie9968

    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

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    • By Kelly Mack Moderator

      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

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  • By Tiptoetammy17

    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

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    • By Kelly Mack Moderator

      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)

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  • By Valerie9968

    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.

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    • By Kelly Mack Moderator

      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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  • By Jillian S Moderator

    Valerie9968,
    It is good to hear back form you. I hope that the short-term course of steroids will help relieve the severe pain you have been dealing with. It sounds like your rheumatologist is working hard to address all your needs. Unfortunately, as I am sure you know, it can often take several months to know if a new medication is effective for you. If you do decide to try a new biologic, don’t get discouraged if you don’t see improvements right away.
    Once you get your current pain under control, I think PT would be quite helpful for you especially since you want to maintain muscle tone.
    Feel free to keep us posted on how the prednisone treatment works out for you.
    We are always here.
    Jillian (Rheumatoidarthritis.net Team)

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  • By Valerie9968

    Dear Kelly: Yes, the prednisone has helped with my pain greatly. The rheumatologist has me on a very gradual tapering off now. I am on 7.5 mg. daily, down from 20 mg. initially. In about a month I will be off the prednisone entirely. Meanwhile, he has discontinued the Humera which I had been on for 15 years with the thought that it may have lost its efficacy. I am now on a new biologic, golfamimab (sp?) otherwise known as Symphoni. Hopefully, this new medication will treat the inflammation which the doctor believes caused the flare-up of my symptoms. My bloodwork showed a spike in my inflammatory markers. The reduction of pain has meant that I have been able to resume walking with my walker for exercise. And I have not had to resort to using a hoyer lift. Thank you for checking in with me.

    Valerie

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    • By Kelly Mack Moderator

      Hi Valerie,

      So glad to hear the increased prednisone worked! I have found that it can work wonders in relieving inflammation and pain! How is the Simponi working for you? Notice any difference yet? I have heard a few stories recently about a biologic losing efficacy and that switching to another can help. Hope that works for you too! Best, Kelly

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  • By Mariah Z. Leach Moderator

    Hi Valerie ~

    How’s it going weaning off the prednisone? Having done it myself I know that it can be a difficult process sometimes! And the Simponi? How is it treating you? I had a similar experience with Enbrel – it worked really well for me for years then, shortly after my second son was born, seemed to just…stop working as well as it used to. The good news is that my new biologic is the best one I’ve had yet, so I hope that you get similar positive results!

    Hang in there and remember that we are here to support you!

    ~Mariah~ (Site Moderator)

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  • By Valerie9968

    Hello Kelly and Mariah:

    Unfortunately, weaning off the prednisone has brought the pain and stiffness back and I am having more difficulty with transfers (especially in the morning). Originally, I was on 20 mg. and now I am down to 5 mg. In a couple of days that will go down to 2.5 mg. So far, Simponi doesn’t seem to be helping me. I plan to contact my rheumatologist and tell him what is going on. Don’t know if he will up the prednisone or not. I know docs don’t like you to be on prednisone for very long due to the side effects so am not sure what he will say… I feel like I’m caught between a rock and a hard place — the prednisone really helps with the pain and gives me more mobility but has serious side effects. Yet if I’m not on the prednisone, I don’t feel as stable in my transfers and worry about the possibility of falls and am less inclined to walk for exercise due to the pain. I use a walker for transfers and walking exercise but otherwise use a power wheelchair. Any advice or support you could offer me would be greatly appreciated..

    Valerie Brown

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    • By Kelly Mack Moderator

      Hi Valerie, Really sorry to hear that the Simponi isn’t working and that you are feeling worse as the prednisone has been stepped down. I have been there and can definitely relate. Has your doctor brought up any other biologics or treatment as possible alternatives? It is really important for you to feel stable enough to do transfers and get around as you need to, so perhaps your doctor will agree that more prednisone is better (even though the side effects are a negative trade off). I also use a walker, power wheelchair, and can only walk/transfer short distances. Discussions with my doctor often focus on balancing my quality of life now versus the negative consequences of drugs for the future (ie- prednisone). Sometimes I may lean towards taking care of now because that will get me to the future! But I think these things are good things to talk about with your doctor in order to work on creating the best possible balance. When do you see your doctor again? Thing of you–Best, Kelly

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  • By Mariah Z. Leach Moderator

    Hi Valerie~

    At this point, I think that speaking to your rheumatologist is probably the best thing you can do. He is the one with the most expertise about your individual RA symptoms and can help you come up with a “battle plan” to move forward. I recommend being very honest and up front with your doctor about your various thoughts and concerns. While it is true that many people experience negative side effects when on prednisone over the long term, this is not true for everyone. Some people stay on a constant dose of predisone – while others use bursts when needed. One thing that might help you and your rheumatologist decide the best way to move forward is to evaluate the side effects of prednisone and consider your short and long term goals. RA treatment is almost never perfect – it is always a balancing act of pros and cons – so it would be helpful to know which goals are most important to you so that you can try to address those first as you make a plan for the long term.

    Best of luck and please remember that we are here to support you.

    ~Mariah~ (Site Moderator)

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  • By ThatsLucy

    Hi All–My name is Kristen. I found that the steroids (pills and injections) only hastened my joint deteriorations, but that’s me…I’m 62 and have had JRA since age 10. I too have a joint (LT shoulder) that doesn’t have a “head” (deteriorated) left to do a 4th replacement. So I guess when we get to this stage the docs just treat the pain. It’s either that or cut the limb off, right? Wait, doesn’t that mean we might be a candidate for a bionic replacement? Maybe they would only do that if it were the only functioning limb…See, I’m right-handed, but because I had my right shoulder replaced 4 times and lost my bicep, I eat w/my left, pretty much everything else too but write, which is challenging now. What a predicament, huh? Best wishes to our Valerie.

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    • By Kelly Mack Moderator

      Hi Kristen, so sorry to hear about your shoulder issues. I too had JRA a long time (diagnosed at age 2 and now age 40) and the long term damage is rough. I hope that your doctor can help and that if you have to get a 4th replacement, that the recovery goes well. Hang in there and keep us posted when you can. All the best, Kelly

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