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hypophysitis

Forums General Melanoma Community hypophysitis

  • Post
    KAF
    Participant

      HI all,

      I'm one of the lucky ones to be NED after being diagnosed stage IV in May 2016.  I got hypophysitis in August 2016 (3rd round of Ipi/Nivo).  I was put on 70mg of prednisone, weaned down to 5 and then started having double vision.  Went right to the MRI and had inflammation again.  I was put on 100mg of prednisone and weaned down to 5mg.  I've been on 5mg since December 2016 and started back up with just Nivo.  After a couple of scary Pet Scans I'm back to NED (my doc thinks the flare ups on the scans was my reaction to the Nivo and not melanoma because the locations keep changing).  

      Has anyone had hypophysitis and had recovery of their pituitary?  If so, were you able to totally go off the steroids?

       

      Thanks,
      Karen

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    • Replies
        Aaron
        Participant

          Hey Karen, it's your twin.  I am not sure I have read of many recovering pituitary normalcy.  I am no longer on Prednisone but I do take Hydrocortisone.  

            KAF
            Participant

              HI Twin, hope you're doing well!.  Not sure why they kept me on prednisone instead of Hydrocortisone which is more common.  Either way, I've been able to stay on treatment which is good but I'm so curious if anyone has been able to wean off or if I should even attempt it.

            MovingOn
            Participant

              I’m right there with you in terms of hoping the pituitary function returns. I watch my TSH with each set of bloodwork. When my pituitary was swollen my TSH bottomed out at 0.022 (normal is 0.37-4.0). My TSH slowly climbed to 0.1 and even 0.15, but it stopped increasing beyond that point. So at this point I’m not expecting it to recover but if it does then I will of course be very happy. I take 15-20mg of hydrocortisone and 88mcg levothyroxine daily. There are some Pituitary specialty centers, such as at UCSF, but I haven’t pursued going there. I’m just glad my Endo knows a lot about the condition (my first Endo didn’t). Take care!

              BrianP
              Participant

                Haven't heard of anyone recovering their pituitary function Karen, at least not in regards to cortisol deficiency.  My hypophysitis onset was in Dec 2013.  Been of the 5mg of prednisone ever since.  Have tested a couple times over the years to see if I've had any recovery by skipping a morning dose of prednison but headaches come back pretty quickly so I don't go very long without.

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