lupus and cortisol

[Annedee]

I’m sorry for this long post. There is a reason for it though.

i was diagnosed with sle in December 07, treated with with prednisolone and hydroxychloroquine for ten years. I since have a Kenalog 40 steroid injection every 12 weeks. Plus small courses of prednisone as needed. I also have osteoarthritis, chronic kidney disease, bowel disease and now, after 5 years of dangerously low b12 and iron, was An emergency admission to hospital 10 days ago. I have had all sorts of symptoms which after such a fight for help, have been told my cortisol crashed and I was close to my body shutting down. I could barely function. Couldn’t swallow or eat, dizzy spells, freezing cold and then dreadful sweats. Abdominal pain was dreadful so I had visit to surgeon who performed my colostomy then the reversal. Nothing to be found.

my symptoms were all written off as either depression, anxiety or lupus. Plus I’m now over 65 and invisible. Please don’t be misdiagnosed because you have lupus sle. Ask for the tests if you have symptoms of Addisons Disease- which I now have due to all the steroids to treat the lupus. Another life threatening illness with specialist treatment and an endocrinologist plus rheumatologist. Google it and be informed. Thank you for reading this.

[PMRpro]

I'm so sorry you have had such a dreadful experience. Had you been on our forum, PMRGCAuk, and mentioned your symptoms there, there would have been a queue to warn you of what could happen. You have been very lucky to get away with it,

It isn't actually Addison's disease - it is tertiary adrenal insufficiency due to long term use of steroids. Though to be fair - the average healthcare professional hasn't a clue about that and Addison's disease is better understood. Though believe me, even when you tell them that they just look clueless.

There is an Emergency Steroid Card to carry as well as the Blue Steroid Card -

endocrinology.org/endocrino...

This has a lot of booklets to download:

pituitary.org.uk/

And this also has a lot of info:

pituitarysociety.org/

Maybe point out this reply in your post - people often don't read the replies so it could be missed.

[DogHospiceMom]

I am so very sorry for all you are having to endure. Since hydroxychloroquine was the first medication I was put on after my Sjogrens & Lupus diagnosis and then taken off 18 months later because it trashed my eyes, I have always been very vigilant in researching any potential side effects of any medication I am prescribed. I was getting steroid injections in my back, shoulder & hip until discovering that the steroids were making my glaucoma unmanageable. I always consider where a drug is metabolized, kidney or liver so as not to put too much stress on one organ alone. Low B vitamins are a symptom of MTHFR which is a problem with the liver not having the functional enzymes to metabolize the B vitamins. If your B vitamins are not metabolizing that leads to homocysteine building up in your bloodstream which leads to heart disease, strokes and blood clots. The abdominal pain you are experiencing may be due to vasculitis where the veins become inflamed and swell inhibiting blood flow to your intestine, liver and abdomen. This can cause mesenteric ischemia. Of course chronic inflammation plays a part in all of these issues. Whenever possible, I use alternative natural remedies for any issue that I am having. Using an infrared sauna can reduce inflammation by 30% in one session along with removing toxins from the body that contribute to inflammation. Essential oils can do a world of good for all types of health issues. Vibrational frequency sound tracks can easily be found on YouTube for general health or specific health issues. It’s imperative that you advocate for yourself whenever you have a health issue because throwing drugs at a physical condition can cause more harm then good. However, most doctors only learn what drug should be ordered to fix a symptom not necessarily cure the problem.