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Addison's Disease Message Board


Addison's Disease Board Index


Hello everyone,

I started taking prednisone in Feb of 08 because my diaphram wasn't working due to muscular dystropy. In Oct of 08 I started having low blood pressures. My DR sent me to a cardiologist did all sorts of test and everything came out fine. He then did my laying down, standing up and resting BP's and they were all different. He then sent me for a ACTH stim test and showed that I had secondary adrenal insuffiency, so he told me to take morning prednisone and evening prednisone. However I would still have low pressures and they just kept telling me to increase the prednisone. I never have seen an endo. In Jan of this year I went to have surgery to remove my gallbladder. It was a nightmare. My pressures crashed during surgery and almost died. I was so sick, my pressures were so low, like 89/50. I came home and strugged like and idiot and managed seriously to survive. My surgeon was the one tha told me I needed to see an endo for I could die where the pressures are so low. So I have an appt this Wed and this DR sent me for all this lab workup, including the aldersterone that I read about. He wants all my records of what they have done to me, which IS NOTHING, JUST THAT one ACTH test. So other than just having severe low blood pressures, being so tired, seeing black spots at times where I feel like I am going to pass out, is their anything they can give me to control my BPs? All I take it 12.5mg of prednisone @8am and 7.5 prednisone at 2pm. I just feel so bad I am just scared of going to an endo and getting nowhere.

Thanks for taking the time to read this,
Lisa
I was first started on predinose too and didn't do well on it at all, and ended up in crisis and almost dead in the ER... I would suggest you start taking hydrocortisone instead, which is bio-identical, meaning your body doesn't have to convert it like it does prednisone. It also helps with low BP, but if it doesn't help enough you need to get on fludrocortisone (Florinef) that helps replace aldosterone, which helps maintain BP and electrolytes. You MUST find a good endocrinologist!! good luck at your appt on the 23rd, but be forewarned that a lot of endo's aren't very knowledgeable about us, so you might have to keep searching for a good one...

Good luck and feel better! Florinef has made a big difference in my low BP... :)

xoxo,
Suzie
Thanks Suzie for your reply. You know that is my fear, that this endo is not going to know much bout addisons or secondary adrenal insufficiency. I have been on prednisone and your right, I have been on all sorts of doses and it doesnt seem to help out at all. I have been on my own since this nightmare started in Nov of 08. Not until my surgery this past January and the pressures bottoming out did I really realize that this was serious. Its scary. For the past 3 weeks I seem to have new symptoms with the low pressures. I have this craving for salt, these wicked headaches that wont go away at all and yesterday my BP was 86/49. That scared me. And no amount of salt will help. I will keep you all posted on what this doc says Wednesday. You all have a great day!

Lisa
A very important thing that your Endcrinologist should discuss with you is doubling your meds in any stressful situation. When you get sick or have surgery, your body needs extra meds to help your immune system fight. If you don't do this, you could have a "crisis".

I agree about the florinef. I was diagnosed with Addison's at age ten and really started to get better when I went on Florinef (in addition to hydro).
I also tried prednisone but reacted poorly to it so I went back to hydro. My levels have been great for years!





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