The original version of this page can be found at : http://www.healingwell.com/community/default.aspx?f=16&m=3840823
Posted By : pitmom - 5/2/2017 4:54 PM
Ohhhh Seashelllllll.....

Doctor switched my daughter from dexamethasone to hydrocortisone and now she's having awful swelling of her feet and ankles. Any suggestions?

Been playing phone tag with the doc.

Thanks so much.

Posted By : (Seashell) - 5/2/2017 10:46 PM
Pitmom:
Fluid retention and swelling is typically a sign of excessive steroid dosing.

Hydrocortisone (HC) is the preferred corticosteroid for treating adrenal insufficiency because hydrocortisone is biochemically the most similar to the body's naturally produced cortisol. You will find most endocrinologists prescribing HC for adrenal insufficiency. This is likely the rationale for the change.

I believe the conversion factor for dexamethasone to HC is 1:12. That is, 1 mg dexamethasone = 12 mg HC.

You might want to review your daughter's prescription and HC dosing.

The fluid retention may also be a symptom of the change from dex to HC. Dexamethasone has a 24 hour half life in the body. It is not rapidly excreted by the kidneys nor metabolized quickly. In starting the new HC dosing, your daughter is likely over-replaced due to dexamethasone that remains in her system.

Bottom Line: fluid retention is typically a sign that the steroid replacement dose is too high. My sense is the prior dexamethasone has not been fully metabolized and excreted given its lengthy half life.

How is your daughter doing otherwise post trans-phenoid resection?

I applaud you for being a supportive parent. Pituitary disorders affect both one's physical and mental being, and can be socially isolating. It would have meant the world to me if my mother could have been a support and ally in my corner. Best to both of you,
- Karen -
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Posted By : pitmom - 5/3/2017 3:33 PM
Thanks so much for replying.

Her doc said she wanted to switch Margie to HC because she was experiencing muscle loss from dex. Keeping in mind that the heart is a muscle, I'm fine with this!

Her adrenals are slow to wake up and when they ran one of the tests, her pituitary did not react as strongly as they had hoped it would. Another reason to switch her to HC. I don't know the numbers exactly, but if 7 is the low end of 'normal' she only got 6. Close, so we are still hopeful it will wake up on it's own and get back to work!

She's got sinus issues now. Allergy season is proving quite challenging for her now.

I did some research last evening...told her to avoid salt...today her swelling is better. We'll be having steamed asparagus with dinner tonight and I'll be picking up 'better' snack food for her instead of pretzels! I asked her if she had been 'craving salt' but she said no, the pretzels were 'convenient'. Ugh.

Thanks for the conversion numbers. I'll have to see what her dex dose was and what her HC dose is.
multiple surgeries for rotator cuff both shoulders with residual chronic impingement syndrome, ulnar nerve transposition, carpal tunnel release, wrist ganglionectomies/denervectomies/tenolysis, multiple herniated discs, tarlov cyst, whiplash, bursitis of hips, tendonitis, torus, 3rd degree shoulder separation, torn labrum, ovarian cysts, fibroid tumors of the uterus

Posted By : skeye - 5/3/2017 4:32 PM
Pitmom,

I'm obviously not a human doctor, but I can tell you that dexamethasone does not have any significant mineralocorticoid properties, where as hydrocortisone does. So that is probably why your daughter is having issues with water retention (the mineralocorticoid activity leads to salt and therefore water retention). Like Seashell said, it may be a dosing issue. Or it may be something that will resolve after her body has had time to adjust to the new medication.

I don't know if your daughter is also on fludrocortisone or another mineralocorticoid (we put our veterinary Addison's patients on both a strict mineralocorticoid (desoxycortisone pivalate) and prednisone -- mostly glucocorticoid, but has mineralocorticoid activity as well), but if she is on a strict mineralocorticoid as well as the hydrocortisone, it also may be that her dose of mineralocorticoid needs to be lowered now that she is receiving additional mineralocorticoid coverage from the hydrocortisone. Either way, best to talk to her doctor if this does not resolve within the next several days.

Skeye

Posted By : pitmom - 5/3/2017 6:29 PM
Skeye,

Thank you for your interest and information. My daughter is 18 months post pituitary resection for Cushing's disease.

We are working closely with her endocrinologist, trying to get her pituitary gland to 'wake up' and 'get back to work'.

Cushing's is a 'rare' diagnosis...1 in 1 million. This has been years of frustration and testing, testing, more testing, leading to her surgery. Her body doesn't make enough cortisol, yet. She's been on dexamethasone, then switched to hydrocortisone which lead to so much pain that the doctor put her back on dex. Now, she's having muscle loss, so the doctor put her back on hydrocortisone for the rest of the weaning process.

The leading specialist is in California and we cannot travel out there from NJ. I feel like I know more than the doctor sometimes. Guess that comes from having time on my hands to research. She has 'secondary Addisons' which we are hoping will resolve with the weaning and the pituitary waking back up.
multiple surgeries for rotator cuff both shoulders with residual chronic impingement syndrome, ulnar nerve transposition, carpal tunnel release, wrist ganglionectomies/denervectomies/tenolysis, multiple herniated discs, tarlov cyst, whiplash, bursitis of hips, tendonitis, torus, 3rd degree shoulder separation, torn labrum, ovarian cysts, fibroid tumors of the uterus

Posted By : (Seashell) - 5/3/2017 9:55 PM
Pitmom:
The "expert" that I think you are referring to in California (Dr. Franklin) is really not as esteemed as you may have been lead to believe.

Pituitary disorders are complex and complicated. The feedback loops between the HPA axis and between the pituitary gland and secondary endocrine glands are intricate.

The "Best" resource for pituitary management will be found at a comprehensive Pituitary Center. Pituitary Centers are speciality centers located within large, urban hospitals and provide a multidisciplinary approach to the diagnosis and management of pituitary disorders. Typically, they combine the resources of endocrinologists, neuro-endocrinologists, neurosurgeons, maxilofacial surgeons, physical therapists, psychologists .

There are only a handful of Pituitary Centers in the United States. Their locations are limited to the west coast (Los Angeles, San Francisco, Seattle) and the east coast (Georgia, Massachusettes, New York) of the country.

Emory University has the #1 rated Pituitary Center in the country. It is located in Atlanta, Georgia.

I was able to petition my insurance provider for a consultation and follow-up care at the Pituitary Center at Swedish Hospital in Seattle, Washington. The care provided has been immeasurably valuable. I receive my day-to-day monitoring by my local endocrinologist in Portland who collaborates with the Pituitary Center specialists in Seattle.

You might want to explore the option of petitioning your daughter's insurance provider to provide a consultation at a recognized Pituitary Center.

The Pituitary Network Association (PNA) has a listing of the accredited Pituitary Centers in the country. They can help you located a Pituitary Center that would be willing to work with your daughter's insurance provider.

The pain that you daughter is experiencing is not due to the dexamethansone nor due to the hydrocortisone . . . but rather the muscle pain is a direct reflection of the titrating process of steroid that she is undergoing with the hope that a slow titration will "reboot" her pituitary gland to begin producing adequate ACTH. The titration process is agonizing slow and difficult. Not all people are able to achieve a successful reboot of their pituitary glands.

After a year, I would be having a conversation about whether or not it looks feasible for your daughter's pituitary gland to successfully reboot. The issues are many and complex. For example, her pituitary gland may be able to produce adequate ACTH for basic days where there is little to no stress . . . but may falter under circumstances of an uptick in stress (a cold/flu, work related stress, etc).

So you have three possible scenarios scenarios: 1. The pituitary gland recovers fully 100% for both day-to-day needs and for needs of increased cortisol demands; 2. The pituitary gland is not able to reboot sufficiently to cover for basic, low level day-to day needs (the decision then to place her on replacement steroids for life); 3. The pituitary gland recovers partly but does not recover 100% (the decision then is how to address her health needs/cortisol needs during times of increased physical/emotional stressors).

Adrenal insufficiency is an intricate disorder that affects the entire body. Make sure that you have an endocrinologist who is a pituitary specialist on board, especially as your daughter's pituitary remains under par.
- Karen -
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Posted By : skeye - 5/4/2017 7:50 AM
Ah, I was thinking she had primary Addison's (I know I've read posts about her from you before, but it's been a while & I couldn't remember -- I just assumed she was Addisonian since she was on steroids). Both Cushing's and Addison's can definitely be difficult diseases to manage. Both are not entirely uncommon diseases in dogs, and we too often struggle to get them and keep them under control.

That stinks that that specialist is so far away. I wonder if maybe he/she or another endocrinologist specializing in pituitary disorders might do a phone consult if they are too far away to travel to? Obviously it's not the same as seeing the doctor in person, since they can't do a physical exam, etc, but it still might be helpful if your local doctor is having difficulty managing your daughter's disease.

Skeye

Posted By : pitmom - 5/16/2017 4:01 AM
Update...we are now thinking that the swelling might be related to the gabapentin her doctor prescribed for diabetic neuropathy. Ugh. She is on so many meds...shake her and she will rattle!

Her 'wean' is not going well. Lot's of pain. She's seeing the doc at the end of the week.
multiple surgeries for rotator cuff both shoulders with residual chronic impingement syndrome, ulnar nerve transposition, carpal tunnel release, wrist ganglionectomies/denervectomies/tenolysis, multiple herniated discs, tarlov cyst, whiplash, bursitis of hips, tendonitis, torus, 3rd degree shoulder separation, torn labrum, ovarian cysts, fibroid tumors of the uterus

Posted By : (Seashell) - 5/17/2017 7:51 AM
Pitmom:

In "weaning" or titrating down from corticosteroids, an uptick of muscle and joint pain is to be expected. With each downward titration, there is a corresponding decrease in serum cortisol. It is the lower level of serum cortisol which is causing your daughter more aches and pains. Cortisol is the body's principal anti-inflammatory agent.

The goal of the weaning process is to jump-start a lagging pituitary gland. With each downward titration of oral steroid, the serum cortisol level is lowered - which the pituitary gland should respond to by increasing its secretion of ACTH. Each gradual downward titration is geared toward nudging the pituitary gland to "re-awaken" and increase its functionality.

Your daughter is now 18 months post resection of her pituitary adenoma with continued low pituitary output. I would be advocating for a discussion of how/when is it decided that enough is enough. That is, how much longer is the endocrinologist suggesting that your daughter continue with the current strategy before committing to full corticosteroid replacement.

Not all pituitary glands are able to recover. The weaning process has an inherently low success rate.

Here's the deal . . . even if your daughter recovers pituitary function of ACTH secretion, the concern remains if the pituitary gland will be able to meet rapid upward demands for cortisol during times of stress. For the majority of people who do reclaim some level of ACTH production, the level of production is generally low/basic - meeting the body's needs for only basic and rudimentary daily needs. Any uptick in stress, and the pituitary falters. Unable to ramp up ACTH production.

At 18 months post surgery, the likelihood of further recovery of gland physiological functionality is lessening with each passing day. Optimal recovery is generally seen within the first year post-op.

I am on full corticosteroid replacement. There is a steep learning curve at first, coming to decide on a dosing and timing schedule, learning how and when to updose/stress dose. There is an art and a science to replacement dosing. But I feel infinitely better with full corticosteroid dosing than without. And my sense is that your daughter, too, will feel significantly better with sufficient daily cortisol coursing through her body.

Replacement dosing is just that. Replacement for what the body would be producing naturally if the pituitary gland was healthy and vibrant. I take 15 mg of hydrocortisone a day. You need not be concerned that the corticosteroid dosing will take your daughter back to a Cushing's existence.

Pituitary gland disorders are complicated and complex. But there remains every good reason to believe that a good quality of life is in your daughter's future.
- Karen -
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
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)) : 5/17/2017 7:54:49 AM (GMT-6)


Posted By : pitmom - 5/17/2017 11:01 AM
We're looking for an endocrinologist closer to home. One with pit experience would be best. Most around here focus on diabetes.

I'm dissatisfied with the whole thing at this point. I think they left her on dex too long. I disagreed with dex to begin with, as everything I had read said hydro!

Problem is, she is an adult and I am no longer the 'decision maker'. Ugh.
multiple surgeries for rotator cuff both shoulders with residual chronic impingement syndrome, ulnar nerve transposition, carpal tunnel release, wrist ganglionectomies/denervectomies/tenolysis, multiple herniated discs, tarlov cyst, whiplash, bursitis of hips, tendonitis, torus, 3rd degree shoulder separation, torn labrum, ovarian cysts, fibroid tumors of the uterus

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer