Length of prednisone after hypophysitis?

This topic has 8 replies, 7 voices, and was last updated 7 years, 11 months ago by casagrayson.

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- July 17, 2017 at 10:37 pm
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MovingOn
Participant
May 5th I started on Prednisone (60mg/day) due to hypophysitis from Ipi (diagnosed via MRI). I tapered down by 10mg every 7th day until reaching 5mg. I have been at 5mg/day for more than 4 weeks now. But whenever I try to stop completely my headache comes back.

Have others remained on prednisone for more than 9weeks following hypophysitis from Ipi?

I don't see my Endo. again until mid August, that is when we will come up with a long term plan (88mcg levothyroxine, testosterone, cortisol, ?)

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- - July 18, 2017 at 2:40 am
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  miaka618
  Participant
  It may be possible that your body is no longer producing cortisol and that is where the headaches are coming from. I am taking 15 mg of Hydrocortisone daily now, and will continue to do so for the rest of my life because of hypophysitis.
  - July 18, 2017 at 5:29 pm
    
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    bcbcbc55
    Participant
    
    Took prednisone for 10 wks , just tapered off of it this week. Have had a few joint pains but taking tylenol, hate the moon face and weight gain. Had same hypophysitis and dealing daily with periperal neuropathy
- - July 19, 2017 at 1:59 am
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  BrianP
  Participant
  MovingOn,
  
  You will likely be on prednisone indefinitely. I expereinced hypophysitis in Dec of 2013. Did a similar taper to you and have been on 5mg daily prednisone ever since. I've tried a couple times over the years to see if I could stop and each time I had to return to the daily prednisone. Used to bother me that I needed it daily but now I don't think about it.
  
  I'll be curious if anyone replies with success stories about discontinuing the prednisone. My understanding and what my endocrinologist thought is that the damage done is usually permanent.
  
  Brian
- - July 19, 2017 at 11:21 am
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  Rod
  Participant
  i too suffered hypophysitis from Ipi and have been on Hydrocortisone, Levothyroxine, testosterone for 3 years and have been told by my endo that most likely it is permanent and will require lifelong hormone replacement.
  - July 19, 2017 at 12:24 pm
    
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    BrianP
    Participant
    
    Rod,
    
    I'm on testosterone as well. Curious why hydrocortisone over prednisone. Is that a doctor recommendation? What's the levothyroxine for?
  - July 19, 2017 at 7:49 pm
    
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    jennunicorn
    Participant
    
    Hydrocortisone and Prednisone replace the hormones that are not being created by the adrenal glands. Levothyroxine is to replace the hormones created by the pituitary and thyroid glands. Sometimes a patient only has low thyroid function and their adrenal glands are fine, so they would only need levothyroxine, but a lot of times they are all affected, especially if the pituitary gland is the one taking the big hit, since it's one crazy system. The pituitary gland also controls the sex hormones, so men need testosterone and women need estrogen replacements. Just a little info on the different drugs.
- - July 19, 2017 at 10:08 pm
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  Jubes
  Participant
  I was on prednisone for nearly a year. The highest dose was 50mg per day. At the same time I am on thyroxine for the rest of my life as I lost my Thyroid function almost immediately after starting ipi then pembro. I tapered much more slowly. Probably over 4 months starting by 10 mg less for the first week but slower when I got to 20 mg. Sometimes it was 2.5 mg less each week. In the meantime the endo couldn't tell if my adrenal glands were working as the prednisone was doing the job. When I got down to 2.5 mg and then totally off prednisone it took 6 months for my cortisol readings to get to 150 then slowly to 250 and now they are up to 350 which I think is acceptable.
- - July 20, 2017 at 5:15 pm
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  casagrayson
  Participant
  Your pituitary gland is damaged, and not producing ACTH, which signals the adrenals to produce cortisol. Hydrocortisone replicates the body's natural production of cortisol more closely than prednisone. Prednisone has a longer half-life and is not as easy to control as far as side effects (weight gain, sleep patterns) are concerned. 5mg of pred is equivalent to 20mg of hydro, which can be split into two or three doses (typically 10/5/5, or maybe 15/5). Having more in the morning and then little doses later in the day might help the headaches as our bodies need more cortisol in the mornings than at night. It is possible that your pituitary might "wake up" depending on the damage incurred — but probably not.