Addison's Disease Support Group
Addison's disease (also known as chronic adrenal insufficiency, or hypocortisolism) is a rare endocrine disorder. It is estimated that it affects about 1 to 2 in 100,000 people. It occurs when the adrenal glands, seated above the kidneys, fail to produce enough of the hormone cortisol and, sometimes, the hormone aldosterone
Hi everyone, I am looking for some help and advice...and apologise in advance if I am asking silly questions or questions EVERYONE asks!!
I have been struggling for 10 years with one sided facial droop and heavy/weak limbs/muscles....and severe fatigue...though more heavy exhaustion than over sleepiness??? The other main problem has been anxiety, I went from a confident young lady at 20 travelling the world to almost housebound!! It has been so out of character for me and I have tried everything to help the anxiety with no success!!
The Doctors have been stumped, the best diagnosis I have is Myasthenia Gravis...though I do not show up on any of the tests!!! Mestinon is the first line medication for it (which is a stimulant) and it helped for 3 months...but then I took a trip to Disney with my daughters and crashed hard last Christmas and have struggled ever since!!
I have come across Addison's Disese before and though I am very pale (deathly at times!), get nauseous and struggle to stand as it feels like my blood pressure has plummeted and my blood sugar is always on the low side...I don't have any greying of the skin?? I know there is also Adrenal insufficiency...but I am not sure of the difference...if there is one?! Can anyone tell me what tests they do to diagnose and would this show up on any routine bloods??
The reason I am posting is that my Doctors started me on 25mg a day of prednisolone last Wednesday and I am seeing slow improvements in my muscles and fatigue....but also, my anxiety is the best it has been for YEARS!!! Do any of you take Pred...and if so what is the usual dose and improvement time??
Thanks for reading this and for any thoughts/advice/ideas any of you may have as to whether you think what I am describing sounds anything like what you are all dealing with.
Eve.x
I have been struggling for 10 years with one sided facial droop and heavy/weak limbs/muscles....and severe fatigue...though more heavy exhaustion than over sleepiness??? The other main problem has been anxiety, I went from a confident young lady at 20 travelling the world to almost housebound!! It has been so out of character for me and I have tried everything to help the anxiety with no success!!
The Doctors have been stumped, the best diagnosis I have is Myasthenia Gravis...though I do not show up on any of the tests!!! Mestinon is the first line medication for it (which is a stimulant) and it helped for 3 months...but then I took a trip to Disney with my daughters and crashed hard last Christmas and have struggled ever since!!
I have come across Addison's Disese before and though I am very pale (deathly at times!), get nauseous and struggle to stand as it feels like my blood pressure has plummeted and my blood sugar is always on the low side...I don't have any greying of the skin?? I know there is also Adrenal insufficiency...but I am not sure of the difference...if there is one?! Can anyone tell me what tests they do to diagnose and would this show up on any routine bloods??
The reason I am posting is that my Doctors started me on 25mg a day of prednisolone last Wednesday and I am seeing slow improvements in my muscles and fatigue....but also, my anxiety is the best it has been for YEARS!!! Do any of you take Pred...and if so what is the usual dose and improvement time??
Thanks for reading this and for any thoughts/advice/ideas any of you may have as to whether you think what I am describing sounds anything like what you are all dealing with.
Eve.x
Now having said that, your doctor has started you on steroids already so any test for AD will be compromised. You would need to be off the steroids for a period of time before the testing.
I am wondering if the 25mg dose would really be working yet or whether it is a coincidence?? My other symptoms are still flaring up and down but I am feeling more stable than I have in a while...which is nice!! To be honest I am more than happy with placebo effect if it helps!! I just hope I won't get too many side effects from the 25mg dose!
Thanks again!
Again, it is important that your doctor has you wean off the steroid before testing for Addison's. If you definitely know you have AD you will need Flornif along with the other steroid; I'm also on hydrocortisone with the Flornif which seems to work great for me.