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Non Classical Congenital Adrenal Hyperplasia
I was diagnosed with Non Classical Congenital Adrenal Hyperplasia several days ago, but I cannot start treatment until I've finished this course of antibiotics.
I have been prescribed 25mg Dexamethasone and 0.25mg Aldactone. If all goes well with treatment, I may move to a birth control pill to treat and manage symptoms.
My question is: What should I be expecting by way of side effects once I start treatment? I've read a tad on the internet, but validated information based on a true experience would be much more appreciated.
I have been prescribed 25mg Dexamethasone and 0.25mg Aldactone. If all goes well with treatment, I may move to a birth control pill to treat and manage symptoms.
My question is: What should I be expecting by way of side effects once I start treatment? I've read a tad on the internet, but validated information based on a true experience would be much more appreciated.
There are organizations where you can talk to other kids like yourself. I will pm it to you (and Louise). No emails are allowed openly.
I have no adrenals and I am panhypopit - I take a lot of pills too -and will for the rest of my life - shots, gels, patches etc. too.
I wonder if you are growth hormone deficient too - that is why you stopped growing? I wonder if you doc just tests the same things, but not enough.
As for your other question, no - I think that is just the same.
I have no adrenals and I am panhypopit - I take a lot of pills too -and will for the rest of my life - shots, gels, patches etc. too.
I wonder if you are growth hormone deficient too - that is why you stopped growing? I wonder if you doc just tests the same things, but not enough.
As for your other question, no - I think that is just the same.
i hope you have someone to talk to about your feelings Sydney; thirteen is a tough age, even without the adrenal issues...let me know how you're doing? I'm going with my 7yr old neice Mary Grace to the doctors today; she was diagnosed about a year ago...perhaps you would be willing to correspond with her? so she could ask you questions she's too shy to ask anyone else? but i understand if you're not comfortable (she hasnt grasped the full implications of things, and may not be interested herself).
my name is Louise Horgan, my email is ***@****
my name is Louise Horgan, my email is ***@****
I have had nonclassical congenital adrenal hyperplasia since i was eight. i am now thirteen, and am taking fludrocortosone and cortef daily. i get sick of all the stupid pills, i tend to have thoughts of suicide, but i dont think its effects of NCAH, i just still have trouble coping. i have bloodwork done every three months. when i was younger, in fifth grade, i was about five foot, much taller than most people in my grade for my age. starting now, in eighth grade, im getting more in the shorter range and have stopped growing so rapidly. also, ive been trying to see if people with NCAH have a likelier chance to be gay/lesbian? just wondering.
Yes - if you are on a replacement dose, the amounts should not suppress you too much, but since you are on dex, and it lasts long, doses will add up and your system will go down. So yes, infections will tend to go up - e.g. I had the flu 2x this season so far. Joy.
Ah well it is usually the salt that is the root of all the issues. Or rather the lack of... that is what causes a crisis.
Ah well it is usually the salt that is the root of all the issues. Or rather the lack of... that is what causes a crisis.
Perhaps I misread his prescription form. It looks like it says 25mg, but then again, I can barely read his writing. Either way he told me that these would be supplied to me in a very low dose form and there wouldn't be much by way of side effects. But doctors seem to always tell you that. He also told me I didn't have to worry about taking my medication with food. Perhaps it's .25mg as well? I see here it doesn't even come in 25mg tablet form! Doctors and their wonderful handwriting.
He didn't mention anything about salt-wasting. It being the non classical form, it's highly unlikely I'm of the salt-wasting category. That and I eat salt like it's becoming extinct. I haven't really researched the effects of salt-wasting.
The only side effects I'm really afraid of feeling are nausea and vomiting. I can deal with stomach pain, weight gain, and whatever else may be associated. However, I read somewhere that Dexamethasone is an immunosuppressor. Is this true? Should I worry about getting more frequent infections than I already do?
Thank you very much for your information. You are a huge help!
He didn't mention anything about salt-wasting. It being the non classical form, it's highly unlikely I'm of the salt-wasting category. That and I eat salt like it's becoming extinct. I haven't really researched the effects of salt-wasting.
The only side effects I'm really afraid of feeling are nausea and vomiting. I can deal with stomach pain, weight gain, and whatever else may be associated. However, I read somewhere that Dexamethasone is an immunosuppressor. Is this true? Should I worry about getting more frequent infections than I already do?
Thank you very much for your information. You are a huge help!
I am not sure why you have to wait after the antibiotics - I take my steriods and antibiotics together all the time (I have no adrenals).
I found this:
"Standard CAH Treatment
Currently, standard medical treatment consists of giving a glucocorticoid (a cortisol-like steroid medication, e.g., oral hydrocortisone in children, or prednisone or dexamethasone in older patients). In addition, those classical patients who have aldosterone deficiency ("salt-wasters") need another drug, fludrocortisone (Florinef, which acts like the missing hormone, aldosterone) to be able to retain salt. Infants also receive supplemental salt (as crushed tablets or solutions), whereas older patients with classical forms of CAH eat salty foods.
Although many patients are well-managed on these types of medical regimens, it is very difficult to precisely mimic the native adrenal hormone rhythms and achieve perfect hormonal balance. Thus, most CAH patients have intermittent periods of fluctuating control with peaks and valleys in the hormones doctors use to monitor the effectiveness of treatment (specifically, 17-hydroxyprogesterone and androgens). This leads to increases in the steroid medication doses, and sometimes these become excessive. A known complication of high dose glucocorticoids is growth inhibition.
Individuals with classical CAH are about 1 to 2 standard deviations below the adult population average in height, meaning they are "short normal." A particularly important factor in determining final height in CAH patients is the amount of steroids given as treatment in the first 2 years of life. To preserve height potential, children with CAH should be seen frequently by a pediatric endocrinologist who not only measures blood hormone levels, but also carefully assesses height, weight, blood pressure, and an annual x-ray of the wrist (bone age x-ray).
Nonclassical CAH patients, if they require medical therapy, are usually effectively treated with low dose hydrocortisone (children), prednisone, or dexamethasone (the latter 2 drugs should mainly be used in older adolescents or adults). Excessive dosing with these medications may inhibit growth in young children, and may cause weight gain and/or hypertension. Girls with nonclassical CAH do not require genital surgery. to page top"
The only thing that I would add is that 25mg of dex - are you sure it is not .25 as 25mg is equal to 667.7mg of hydrocortisone and well, 20mg is a standard replacement dose - if you take 25mg, you will not, I repeat not, feel well and gain weight like crazy besides kill your bones, muscles eyes and not have a good mental status. Why would the doc blitz you with that!
When we use dex for testing, we get .5 pills and that sometimes drives people nuts. It is a very long lasting steroid too - to take that for days and stack doses could make you very sick.
The aldactone is to replace adosterone - which you are lacking. Did he talk to you at all about salt - which you may need more of? I take salt tablets to help with that. I also take DHEA which you can find at the drug store in most countries and that the adrenals make.
As for side effects - if you are replaced correctly, you will feel better, if not, well, you will get cushingoid. Look up Cushing's syndrome or Addison's. Hormones don't have side effects really - it is the lack of or too much that create the side effects - except for allergies to the fillers or something like the sore breasts with the BCP.
I found this:
"Standard CAH Treatment
Currently, standard medical treatment consists of giving a glucocorticoid (a cortisol-like steroid medication, e.g., oral hydrocortisone in children, or prednisone or dexamethasone in older patients). In addition, those classical patients who have aldosterone deficiency ("salt-wasters") need another drug, fludrocortisone (Florinef, which acts like the missing hormone, aldosterone) to be able to retain salt. Infants also receive supplemental salt (as crushed tablets or solutions), whereas older patients with classical forms of CAH eat salty foods.
Although many patients are well-managed on these types of medical regimens, it is very difficult to precisely mimic the native adrenal hormone rhythms and achieve perfect hormonal balance. Thus, most CAH patients have intermittent periods of fluctuating control with peaks and valleys in the hormones doctors use to monitor the effectiveness of treatment (specifically, 17-hydroxyprogesterone and androgens). This leads to increases in the steroid medication doses, and sometimes these become excessive. A known complication of high dose glucocorticoids is growth inhibition.
Individuals with classical CAH are about 1 to 2 standard deviations below the adult population average in height, meaning they are "short normal." A particularly important factor in determining final height in CAH patients is the amount of steroids given as treatment in the first 2 years of life. To preserve height potential, children with CAH should be seen frequently by a pediatric endocrinologist who not only measures blood hormone levels, but also carefully assesses height, weight, blood pressure, and an annual x-ray of the wrist (bone age x-ray).
Nonclassical CAH patients, if they require medical therapy, are usually effectively treated with low dose hydrocortisone (children), prednisone, or dexamethasone (the latter 2 drugs should mainly be used in older adolescents or adults). Excessive dosing with these medications may inhibit growth in young children, and may cause weight gain and/or hypertension. Girls with nonclassical CAH do not require genital surgery. to page top"
The only thing that I would add is that 25mg of dex - are you sure it is not .25 as 25mg is equal to 667.7mg of hydrocortisone and well, 20mg is a standard replacement dose - if you take 25mg, you will not, I repeat not, feel well and gain weight like crazy besides kill your bones, muscles eyes and not have a good mental status. Why would the doc blitz you with that!
When we use dex for testing, we get .5 pills and that sometimes drives people nuts. It is a very long lasting steroid too - to take that for days and stack doses could make you very sick.
The aldactone is to replace adosterone - which you are lacking. Did he talk to you at all about salt - which you may need more of? I take salt tablets to help with that. I also take DHEA which you can find at the drug store in most countries and that the adrenals make.
As for side effects - if you are replaced correctly, you will feel better, if not, well, you will get cushingoid. Look up Cushing's syndrome or Addison's. Hormones don't have side effects really - it is the lack of or too much that create the side effects - except for allergies to the fillers or something like the sore breasts with the BCP.
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