It would be worth having your rheumatologist order bloodwork to evaluate your baseline cortisol, as well as ACTH and IGF-1 and growth hormone.
Given that you cite years and years of low effectiveness to standard treatments for your inflammation and pain, your physicians may have been traveling down the wrong road.
It would be worth taking a look at your basic endocrine status for low hormone levels.
The body has over a hundred hormones (that we know of) that serve as chemical messengers that essentially give instructions to the body’s organs and organ systems, telling them how to work and function.
Low cortisol or high growth hormone both would be symptomatic for wide-spread inflammation and joint/bone pain.
Once a person completes puberty and the growth plates close, high growth hormone does not equal what one thinks of with high growth hormone - which is gigantism and large stature.
Growth hormone then acts on receptors embedded in joints, the pelvis, and gradually shows with and subtle changes in the face, feet, or hands. Think of high growth hormone as someone constantly ringing the doorbell to your home. Ring, buzz, ring. Constantly stimulating bone. It is downright irritating and painful.
The term for high growth hormone after puberty is termed acromegaly. It tends to become noticeable in individuals as they come into their 50s. Looking at family photographs can be revealing. Perhaps a wider forehead. Or more prominent jawline and overall larger facial features (nose, chin, broadening of the forehead). Bony ridges, essentially ectopic bone, often are found on the lower palette of the mouth. Feet continue to grow, a gradual increase in shoe size or shoe width, over the years. Pelvis widens. Shoulder girdle widens, shirts/jackets fit more snuggly across the upper back. The changes are slight, subtle and occur gradually and insidiously over time.
The Pituitary gland is the master gland. It regulates all of the secondary endocrine glands. The Pituitary gland is the size of a small pea, sitting at the base of the brain and deeply protected in a bony encasing called the sella turaica. A compromised Pituitary gland will compensate as best as it can for as long as it can. That the Pituitary gland is ailing will not make itself readily apparent. It has a life-essential role and do whatever it must to keep the body alive, even as it may weaken in function. It is not usual for people with Pituitary issues to find symptoms at a tipping point leading to diagnosis at two key life inflection loonts: a. Puberty, as the Pituitary gland is physiologically challenged to produce an onslaught of gender-specific hormones; b. Early-mid 50s, as the Pituitary gland is fatigued by years of compensating for what may have been a compromised state and it can simply no longer.
That this steroid pack has “hit” you more severely, that you are not bouncing back as you have been able to before, does give strong suggestion that you may have had some long-standing degree of Pituitary inadequacy. A level of inadequacy that your body has been able to somewhat compensate for but with age and physiological fatigue is struggling to sustain.
You may want to visit the Pituitary Network Association (PNA). It was established in the early 1980’s in response to the dearth of knowledge and awareness of Pituitary disorders. It is a beacon of light. People with Pituitary disorders are, sadly, often mistakenly diagnosed with psychiatric disorders (obsessive compulsive disorders, eating disorders, or people who gravitate to alcohol to soothe their internal state).
Given that I have complete Pituitary loss (pan-hypopitutary) I can attest to the mis-directions that physicians can take when trying to place a name to a symptom.
You may have less a rheumatology problem and more an unknown endocrine problem? It would be worth consideration. Especially given the years and years of rheumatology has not found relief for you.
Pituitary failure, wide-spread endocrine dysfunction
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)
Post Edited ((Seashell)) : 1/26/2019 12:02:53 PM (GMT-7)