I have a synacthen test booked and suspect that after 5 years on quite high doses of pred that my adrenals have been damaged.
My questions are:
1. Has anyone with adrenal insufficient later regained the function?
2. Do you then add an endocrinologist to your list if Drs?
3. Do you all have an emergency injection to carry with you?
Thank you.
Hello, AmyS1. I have had adrenal insufficiency for about 8 years now, due
to the same reasons as you.
In answer to your questions:
1. Yes, I see an endocrinologist about once a year just to monitor how things are going. So far, my adrenals have not regained function but mainly due to events (e.g. joint replacement ops) happening in the meanwhile .
2. Yes, it is important to carry an emergency injection with you, too. I was also advised to wear a medic alert obracelet as well.
I have to say, it is just another thing to think about but I haven't had too much trouble with it, touch wood !
I wish you luck and good health.
With best wishes
Trebar
We have a few members on the PMRGCA forum who have had synacthen tests that showed insufficiency who have later regained function by tapering the dose even more slowly. All of us are on pred for years and anyone with GCA was on highish doses for a long time. A study in Leeds has found that probably half of patients have some difficulty in regaining adrenal function but that it is possible by changing the approach and slowing things down. Which is what we patients have been saying for some time!
What dose of pred are you on at present? Because that is significant at this stage...
Very slow taper 0.25mg over 3 weeks now down to 5.25/ 5mg on alternate days.
You are only just at the stage where the synacthen test is meaningful - but there is still time for the adrenal function to wake up. How high were your pred doses?
Hi Amy ... I have been prescribed press, methotrexate and now mycophenolate.cr Cryoglobulemia Vasculitis. Having rarely felt well I went to see a Medical scientist whom took loads of tests , bloods and others... this revealed a number of issues which were Thyroid/ adrenal . She immediately suggested showing results of these to my gp and discussing . Within days ( last week) I saw Endocrinologist and she confirmed suspected problems and am about to return to Endocrine and start treatment... so yes , get to gp for referral ASAP . Good luck !!
Hi yes an Endicrinologist is added to your doctors, you can regain adrenal function and they can do a 24 hour test to see how your levels are throughout the day to make sure you are on the lowest dose possible. If you get poorly you are asked to double your dose. I have adrenal deficiency and have tried a couple of times to come off hydrocortisone without success. I am now on a very low dose - 10mg a day and the medication has less side effects than prednisolone so that’s fine by me for now. Good luck.
Hi Amy
I was on steroids for 6 years starting at 120mg daily and tapering. I agree with the slow tapering at lower doses - it took me 2 years to get off the last 4mg. My adrenal glands did wake up though and I have had no problems at all. Good luck
I am in exactly tge samr position, after the test confirmed that my adrenal gland had not "kicked back" in as it should have done I needed to take regular Hydrocortisone tablets....10mg on getting up then 5mg midday and another 5mg at teatime. I was shown how to put together a syringe, and needle and how to mix and inject a 100mg emmergency kit that I carry at all times. I also wear a wristband and carry a card with me. I was also put on the east midlands (UK) ambulance list so if a call for anything or anyone comes from my address then it is treated as a top priority. I was told this would be fir life as the only way to really test is to stop taking the Hydrocortisone and have another test which my Endocrinologist says would be dangerous.....so yes, another doctor on the list as well.
Hi AmyS1. In answer to question 1. Yes!
In 2011 docs decided I was steroid resistant so took me off Prednisolone but didn’t taper it. This knocked out my adrenal gland function and I wasn’t producing Cortisol.
I was advised by an endocrinologist that I would be on hydrocortisone for life, but thankfully with a lot of clinical support and some great advice over a number of months I managed to regain adrenal function and by 2012 I was off the hydrocortisone with the adrenal insufficiency reversed. It was a huge relief and I feel extremely fortunate, however it does leave me a little edgy if I am in A&E and they use hydrocortisone for my severe asthma at the risk they could be knocked off balance again. (Though probably the alternative of not sorting out my asthma flare up is a little more dire on balance 🤷🏼♀️🤦🏼♀️)
I wish you well
Hi I have been on Pred for a year I had a my Adrenal gland checked which is not working,so I am now under the Endocrine clinic...The dr I see at the Vasculitis clinic would like me to change from Pred to Hydrocortasone as it is a kinder drug ….because of no Adrenal gland working I am taking 7mg of Pred in the morning and7mg at night otherwise I feel exhausted in the mornings …..I have another test booked for the 24th Jan....to see if it has started working...I have been told it doesn't always ….and yes I carry an injection on me and have a wrist band which says Steriod dependency . Hope this helps....and wish you luck with your health.
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