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My daughter was diagnosed with a rare autoimmune relapsing polychondritis. Its attacks cartilage.

Posted , 4 users are following.

aprilhaus76
aprilhaus76

This autoimmune closed her airway to the size of a drinking straw. April 2018 doc done laser surgery on half airway. Aug 23rd she gets 2cd half lasered. They just put her on humira injections. 3 days later random bruises on legs appeared. Brought her to ER an bloodwork was good. But past 2 days her pupils have been dialated.

I'm wondering if anyone here has experienced this with humira and how dangerous is this drug? Shes 17 but I'm still mom and very worried😢

0 likes, 4 replies

4 Replies

  • shelia22921
    shelia22921 aprilhaus76

    Posted

    This is a very bad rare Autoimmune disease,humira list easy bruising, vision changes as side effect, why didn't he put her on plaquenil as she is so young to have this, I would try fine a Doctor that know's more about this disease. it can affect cartilage all through the body, nose ears throat can appear as a redness on nose ears pain, and what they call saddle nose. Plaquenil is not as strong and you have to take it for three to six months before it starts working.low dose predisone can be giving as needed till it starts working if needed, plaquenil has the least side effects hope she gets feels better soon, God Bless

    • aprilhaus76
      aprilhaus76 shelia22921

      Posted

      Thank you. We are seeing a rheumatologist at UT in Houston. It took a week of admitted into memorial herman in January 2018 to find diagnosis. She was misdiagnosed with sleep apnea since 2009 an due cpap not helping anymore at end of 2017 she got worse and pulmonologist sent her to ENT and he said there were 3 wounds in her trachea an trachea was closed to size of drinking straw right under vocal cords. Surgery opened it up half way. Due for surgery next week. They believe humira will help. But all sideeffects scare me
  • shelia22921
    shelia22921 aprilhaus76

    Posted

    I hope humira  will help her, it does have some pretty nasty side effects, I know you are worried watch her close for any side effects from it, I'm glad you are seeing a rhumatologist he is more aware of this type Autoimmune disease, in the mean time I'll be praying for you and her, this is  a very stressful time for both of you, keep me posted. God Bless

  • Gloria814
    Gloria814 aprilhaus76

    Posted

       I am so sorry that your daughter has such a rare autoimmune disease.  I am glad that she will be seeing a rheum in Houston.    They will have a broader base of knowledge re. medication

       The biologics do have alarming side effects but they can work miracles if they do work   You just have to find the right drug.   I was not able to tolerate Humira.  Only took 3 shots before it was stopped.   I had palpations and it just became too alarming but no heart damage 

        Keeping you are your daughter in my thoughts and prayers

      Bless you both

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