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Addison's Disease Message Board

Addison's Disease Board Index

I am new to this forum and I have a question that I am hoping someone can help me with. I was diagnosed with Addison's about 2 years ago. My endo dr. prescribed me with .5 mg of dexamethasone for my replacement steriods and since then, I have steadily gained weight (about 30 lbs over my 'normal' weight). I do not over-eat and regularly excerise so I am very frustrated. Is there a big difference between relacement steroids? My endo dr. just blames me for gaining the weight, saying that what I take for steriods is a 'very normal dose'. Are other types of steroids like prednisone or hydrocortisone any better or worse? I did finally get my dr. to reduce my steriod dosage to .375 mg and I haven't really seen much difference. I still feel ok so I don't know what to think at this point. I would appreciate any advice!

Yes. There is a HUGE difference in replacement steroids... and while you have the lovely convenience of supposed once a day dosing, you are on a very very long acting steroid. Which means that every time you take more, you still have it in your body. Which means you are still adding on top of what you have.

Hydrocortisone has a half life of 8-12 hours. It can be out of the body in a day but when you take more, you are generally not compounding the issue. It is the steroid closest in composition to what your body naturally makes. People normally take this in divided doses to mimic a normal body. A normal body is highest in the morning, drops to roughly half in the late afternoon and next to nothing around midnight. That is why is it not good to take HC after 4pm.

Now, prednisone and dexamethasone are long acting steroids. Pred lasts 18-36 hours and dex lasts a whopping 36-54 hours. So every day you take another dose, you are taking a dose that is on top of what is still staying in your body.

Now, .5 of dex is only about 13.3 of HC, (which is a low daily dose!) but the cumulative dose would be adding up. So all in all, you would be getting more, and your body would never get a rest (overnight) so you would have more sleep issues and weight and in the long term, will have more eye, muscle and bone issues.

Docs are weird in that they think pred and dex are convenient but when the bone issues show up later.. man, they are clueless.
I take dex with medrol and found the coversion are way off which is why everyone taking Dex ends up with problems. I take 3 mg of medrol and 3/32 mg of dex for over 2 years with no problems. At first I ended up gaining 25 pounds in a month and got stretch marks using the common conversions. I started lowering a bit at time and eventually found that the real equivlent is 1/32 mg dex = 5 mg HC = 1 1/4 mg prednisone = 1 mg medrol, thus 1 mg dex = 160 mg HC = 40 mg prednisone = 32 mg Medrol. So 6/32 mg which also equals 3/16 mg of Dex is an actual full replacement dose, but I advocate Medrol/Dex combo, not all dex only if Medrol alone isn't eliminating AI symptoms. I tried a combo because on 6 mg Medrol I still had leg cramps and vomiting in the morning. The 3/32 mg dex with lowering the medrol (small changes at a time to find this) took care of it.
Whoa! Be careful going cold turkey like that! You have some in your system but it may not be enough to keep you going. You can get yourself sick so make sure that you are monitoring yourself and take a little if you need it so you don't end up in crisis mode!

You should lose the weight gradually. Some of it may be water weight and come off quickly but it may take a while for your body to adjust to the HC - give yourself a bit of time.

I have not heard of many people taking medrol, which is methylprednisone and is also an intermediate acting steroid like prednisone. 6mg of medrol = 30mg of HC by the calculator I use which is a dose far above what my docs would give but I know others do.

I tend to be more worried about Cushing's since I had Cushing's and had all the side effects of steroids for years and now only have adrenal insuffiency due to the removal of my adrenals to cure my Cushing's disease.
It all depends.
Depends on your body, if you have other diseases that need to be treated by steroids, if you are heavy, if you are resistent to steroids... there are a lot of factors that go into how much and which steroid to take.

All I can say is that too much steroid will damage the body long term and you may or may not notice it until the damage is done as it will be in the form of bone necrosis, osteoporesis, cataracts, muscle weakness, blood disorders, etc.

Too little steroid and you go into crisis and you die.

It is a balancing act that a normal body does very well.

I used to have Cushing's which was too much. My body has permanent damage to the bones and muscles and blood. I was taking 25mg but I was told that was too much (and I weigh a whopping 205 thanks to the Cushing's) yet I still take 22.5 only to suppress my ACTH which is a bit high (ha ha) at 1801. Most of my friends, who are ex-cushing's patients with no adrenals and hence no adrenal function whatsoever, if they take HC, take between 15 and 25mg daily divided into 2 or 3 doses. I am amazed at some of the people on 15mg. Most of my friends are on 20mg.

Those I know that take prednisone seem to have the most side effects (even if not cush before) and take 5mg or more a day.

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