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pituitary inflammation

Forums General Melanoma Community pituitary inflammation

  • Post
    KAF
    Participant

      3 weeks ago – 1 week after my 3rd ipi/nivo dose I got horrible headaches.  MRI showed an inflamed pituiatry.  I was put on 1mg/kg of prednisone for a week and then weaned down to 5mg/day over the course of 2 weeks.  My headache got better but never totaly disappeared.  On the 2nd day of the 5mg (yesterday) the headaches came on stronger again and i was having blurry vision.  Went in for a stat MRI and it showed the pituitary being the same size as it was 3 weeks ago.  I had an IV push of 80mg steroid but I couldn't stay overnight (I'm a single parent) so I came home and took the 1mg/kg again this morning.  THey want me to go to the ER for a drip but I can't leave my kid so I will go into the ER for the drip in the monring.  The headach is greatly reduced but is still there.  My question for anyone is should the steroid be eliminating my headhache entirely after starting the predinisone or is it normal to take a dary or two or more for the headache to subside.  I feel much beter and my eyesight is normal now so I don't think going to an ER tonight necessary.  Not sure what happened to my pituitary…maybe they tried to wean me too fast.

      anyone else have any input or experience???

      thanks

      Karen

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    • Replies
        MoiraM
        Participant

          I was treated with 3mg/kg Ipi. Four infusions at 3 weeks intervals during summer 2015. No maintenance doses.

          I had an inflamed pituitary as a side effect of being on the Ipi. Although I had headaches, I did not realise their significance, so the first indication that my team had that I was in trouble was me barely being able to walk!

          I never went onto the high dose prednisolone. I was put on 10 mg/day and felt fine within 15 minutes of taking the first dose. However, this was probably because the damage had been done and I was suffeing from lack of cortisol in my system rather that the actual inflamation of my pituitary, which had subsided.

          I had the MRI weeks later, which confirmed damage to my anterior pitiuitary. In my case the damage is almost certainly permanent.  I have now have no anterior pituitary activity.

          That was a year ago. During that year, I had one episode (about three weeks) where the ipi side effects started again and I was briefly on 15 mg/day prednisolone.

          I have never coped on less than 7.5 mg prednisolone/day. In the end, my endocrinologist has accepted that I am deeply miserable (barely able to function) on less than 8 mg/day, which is what I am taking. I know they think I am taking too much but they have accepted that I could be an outlier.

          I am speculating, but it is possible that you have had one or all of three issues going on, (1) you may not get on with prednisiolone, (2) you may be suffering from the withdrawal of the high dose prednisolone and (3) in my experience '5mg/day prednisolone is one-size-suits-all' for cortisol replacement is just not true.

          Have you seen an endrocrinologist yet?

          MoiraM
          Participant

            I was treated with 3mg/kg Ipi. Four infusions at 3 weeks intervals during summer 2015. No maintenance doses.

            I had an inflamed pituitary as a side effect of being on the Ipi. Although I had headaches, I did not realise their significance, so the first indication that my team had that I was in trouble was me barely being able to walk!

            I never went onto the high dose prednisolone. I was put on 10 mg/day and felt fine within 15 minutes of taking the first dose. However, this was probably because the damage had been done and I was suffeing from lack of cortisol in my system rather that the actual inflamation of my pituitary, which had subsided.

            I had the MRI weeks later, which confirmed damage to my anterior pitiuitary. In my case the damage is almost certainly permanent.  I have now have no anterior pituitary activity.

            That was a year ago. During that year, I had one episode (about three weeks) where the ipi side effects started again and I was briefly on 15 mg/day prednisolone.

            I have never coped on less than 7.5 mg prednisolone/day. In the end, my endocrinologist has accepted that I am deeply miserable (barely able to function) on less than 8 mg/day, which is what I am taking. I know they think I am taking too much but they have accepted that I could be an outlier.

            I am speculating, but it is possible that you have had one or all of three issues going on, (1) you may not get on with prednisiolone, (2) you may be suffering from the withdrawal of the high dose prednisolone and (3) in my experience '5mg/day prednisolone is one-size-suits-all' for cortisol replacement is just not true.

            Have you seen an endrocrinologist yet?

            MoiraM
            Participant

              I was treated with 3mg/kg Ipi. Four infusions at 3 weeks intervals during summer 2015. No maintenance doses.

              I had an inflamed pituitary as a side effect of being on the Ipi. Although I had headaches, I did not realise their significance, so the first indication that my team had that I was in trouble was me barely being able to walk!

              I never went onto the high dose prednisolone. I was put on 10 mg/day and felt fine within 15 minutes of taking the first dose. However, this was probably because the damage had been done and I was suffeing from lack of cortisol in my system rather that the actual inflamation of my pituitary, which had subsided.

              I had the MRI weeks later, which confirmed damage to my anterior pitiuitary. In my case the damage is almost certainly permanent.  I have now have no anterior pituitary activity.

              That was a year ago. During that year, I had one episode (about three weeks) where the ipi side effects started again and I was briefly on 15 mg/day prednisolone.

              I have never coped on less than 7.5 mg prednisolone/day. In the end, my endocrinologist has accepted that I am deeply miserable (barely able to function) on less than 8 mg/day, which is what I am taking. I know they think I am taking too much but they have accepted that I could be an outlier.

              I am speculating, but it is possible that you have had one or all of three issues going on, (1) you may not get on with prednisiolone, (2) you may be suffering from the withdrawal of the high dose prednisolone and (3) in my experience '5mg/day prednisolone is one-size-suits-all' for cortisol replacement is just not true.

              Have you seen an endrocrinologist yet?

          Viewing 2 reply threads
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