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Humira for side effects
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Humira for side effects

› Forums › General Melanoma Community › Humira for side effects

  • Post
    • November 15, 2018 at 9:39 pm
    Jubes
    Participant

      Hi all

      i have not posted for a while as things have been moving slowly. I have been Ned since my lung operation in nov 2016 but struggling with inflammation through my entire body. I have been able to keep going with ultra sound guided steroid injections especially to my knee and draining the fluid out. Two months ago we decided it was time to go the big guns and I started on humira which I inject every two weeks. It has worked amazingly and after three injections I am walking without a limp and is fine except my shoulder, which I am continuing to treat with the steroid injections. I am a musician and I have had to be off work for a while not able to lift my right arm ( not good for a viola player) but my dear colleagues have offered to do half of my work for me on our upcoming Europe tour so I can just play the second half of every program.  I just had done more injections and I’m managing fine…even Mahler 5 (an 80 minute marathon piece). I just wanted to warn everyone that when you have these steroid injections your cortisol levels drop. My rheumatologist scared me yesterday as he said I was in danger of dying as the levels were 50 and I couldn’t travel with that level. I called the endocrinologist in a panic and then when we went over everything we realised it’s because I’ve had so many injections and it stops your own cortisol from producing when you have all that fake cortisol in your system. Bad from the Rheumatologist as he’s the one ordering the steroid injections!! Also I have not been fatigued or had any other low cortisol symptoms. Sorry for long post. In a nutshell:

      humira is working for inflammation side effects

      steroid injections affect your cortisol levels

      next step is scans in January to see if the humira has affected my Ned status

      all my best wishes to you all

       

      anne-Louise 

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    • Replies
        • November 15, 2018 at 11:04 pm
        BrianP
        Participant

          Great PSA Anne-Louise.  Keeping my fingers crossed for continued NEDness in January.  

          • November 16, 2018 at 12:49 am
          Bubbles
          Participant

            Hey, sweetie!!!  That is a seriously important factoid to share!!!  Sorry for what you have been through with all the arthralgias.  But super glad humira has helped!!! Hopefully that shoulder will straighten up very soon!!  Fingers crossed for your Jan scans and an everlasting NED status!!! c

            • November 20, 2018 at 2:05 am
            MelanomaMike
            Participant

              Hello Jubes, im Mike, we may have replied to eacother, maybe not, either way YEEEHA! NED! NED!, thats a good thing & im seeing it more & more it seems across the board. You mentioned you battled {and won!} some tumor{s} in yer lungs & took care of it with surgery, thats awesome, i to have the ol" Mel Bug in both lungs & have a surgery set to pull out my RLL of right lung, there resides a 5.4cm Mel Monster that refuses to shrink or stay stable so, its gotta go!..Thanks for sharing about the Humira, i may bring that up to my Onco, my deep nerve pains are the worst!…Take care sis..

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