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    Old 04-12-2008, 10:38 AM   #1
    Carol327
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    Dexamethasone question

    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!

    Thanks!!

     
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    Old 04-12-2008, 04:24 PM   #2
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    Re: Dexamethasone question

    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.

     
    Old 04-12-2008, 05:21 PM   #3
    Hormoneman
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    Re: Dexamethasone question

    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.

    Last edited by Hormoneman; 04-12-2008 at 09:36 PM.

     
    Old 04-12-2008, 06:16 PM   #4
    Carol327
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    Re: Dexamethasone question

    Thanks so much for the info! I am going to call my dr. and ask to switch my prescription to hydrocortisone. And now that makes sense why I have sleeping and weight problems. I generally feel well, just so dang frustrated about my weight.

    I am getting so much good info from this board. Thanks so much!!

     
    Old 04-12-2008, 09:36 PM   #5
    Hormoneman
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    Re: Dexamethasone question

    You're welcome

     
    Old 04-14-2008, 11:23 AM   #6
    Carol327
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    Re: Dexamethasone question

    My endo dr. was more than willing to change my steriods from Dex to hydrocotrisone! So I should be able to start this new prescription tomorrow. I purposely didn't take my dex today so hopefully it will be out of my system by the time I take my new med. I am happy that I can now try something different and see if that makes any difference in my weight struggles. It is not like I expect to drop tons of weight, but I just don't want anything working against me. Are they any bad side effects of hydrocortisone?

    Thanks!
    Carol

     
    Old 04-14-2008, 04:53 PM   #7
    Hormoneman
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    Re: Dexamethasone question

    He started you on dex before trying HC? Medrol would be the next to try, then Dex. Unbelievable, but you know what? I've seen this a few times. I've also seen docs put people on up to 10 mg of dex. Two of those for poison ivy 9mg and 10 mg.

     
    Old 04-15-2008, 06:54 AM   #8
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    Re: Dexamethasone question

    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.

     
    Old 04-15-2008, 07:54 AM   #9
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    Re: Dexamethasone question

    I was in a hurry and forgot mention (thanks Rumpled) that you do need to switch over gradually. If you stop cold turkey you might have a crisis that could put you in the hospital. Probably this is all to late. Some have died stopping steroid cold turkey. Stopping the Dex cold, the good thing is half it it will probably be in your body up to two days later.

     
    Old 04-15-2008, 08:37 AM   #10
    Carol327
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    Re: Dexamethasone question

    Thanks for the recommendation to not quit cold turkey. I did wake up this morning feeling pretty crummy so I did take a dose of dex and I feel ok now.

    I have lately been putting on alot of water weight, I just seem to drink quite a bit and do not have to go to the bathroom alot. I am hoping that will change with my new med. I am also on Fludrocort (and also levothyroxin for thyroid) so I don't know if that is the culprit or not. Who knows.

    I really appreciate all the advice! Sometimes I don't think my endo dr. really understands Addison's. He really only goes by my numbers and even if I have some concerns, he just says that they are independent of my Addison's. I have never been overweight and the minute I get put on steriods I start gaining weight. And when I would bring that concern to him, he just said it wasn't because of my Addison's. He wouldn't even listen when I said that I was having dry skin, hair falling out, irregular cycles, etc. He just said that it wasn't because of my meds or my Addison's. Fortunately, most of those symptoms have subsided but it is frustrating that he didn't even want to talk about it. My husband says that I should switch drs. but I just dread starting over with a new one. I generally feel good so I do just see him every 3-6 months.

    Well enough of my rambling..... Thanks for all the input!

    Carol

     
    Old 04-16-2008, 06:49 AM   #11
    rumpled
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    Re: Dexamethasone question

    It is so very hard to find endos that are decent. People laugh at me as I see three. I just don't trust my life to one of them but she is close by, the other is great but slow and the other will only test 4 things so that is not useful to me but she is a pit specialist where my neuro is.
    Most endos mostly do diabetes (which is numbers) and they do thyroid - and I have to say they do that badly as I thought most of my problems were thyroid for years and they ended up being pituitary and the docs were clueless.
    I overhear and have had docs tell me to change steroids and I just stare them down. They have no clue about how the steroids are going to change your body just think the once a day dosing is better! They always manage to think weight is your fault no matter what.
    If the doc is not going to realize the other steroids are different, you may want to change docs and get one that is going to test you comprehensively as well. Good luck to you!

     
    Old 04-16-2008, 07:53 PM   #12
    Carol327
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    Re: Dexamethasone question

    I just got my presciption filled and my endo dr. wrote it for "20 mgs in the morning and 5 mg at noon". Does that sound right?? It sounds high and it doesn't sound accurate - like it is too much within a short period of time. Luckily I got 5mg pills so I can pretty much decide what to take when. Do you think I should take 10mg in the morning and then 5mg and noon and at 4pm? I think I read that somewhere.

    Thanks!
    Carol

     
    Old 04-16-2008, 09:13 PM   #13
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    Re: Dexamethasone question

    Hi, I am still learning about Addison's disease, I was diagnosed about a year and a half ago and don't have much to add to your thread. I just wanted to let you know that your dose of hydrocortisone sounds about right, I take 20mg in the morning and 10mg at noon. I started off on this dose and gained about 5 pounds and just didn't feel right, so we lowered it and over the course of the past year we have slowly risen it to where I am at now.
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    Old 04-17-2008, 09:04 AM   #14
    rumpled
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    Re: Dexamethasone question

    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.

     
    Old 04-17-2008, 09:14 AM   #15
    Carol327
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    Re: Dexamethasone question

    Thanks for the replies! I am going to see how my body takes the hydrocortisone and will see how I feel in the next week or so. I can 'read' my body pretty well and I will know if I need more.

    I have only been in a crisis mode once since diagnosis. And that was when I had the terrible flu and I forgot (wasn't able to form a thought in my head) to take extra doses. It was so horrible. I wasn't able to stand without almost fainting, I was so thirsty and I couldn't even think straight. My husband was no help since he was battling the flu too. Finally my sister called and reminded me to take more meds and then I started to feel better. It was so horrible. So now that was a big lesson learned that even when I start feeling sick I take more meds. Luckily this year I dodged the nasty flu. I don't know if the flu shot I got worked or not but I think it is a good thing to have.

    Carol

     
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