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    Old 05-05-2007, 05:28 AM   #1
    ktp812
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    cortef dosing

    I was wondering how you all take your cortef. I am taking 5mg four times a day at meals and bedtime. I am still waking up feeling tired and still run out of energy quickly during the day. I am thinking maybe my dose needs to be switched around. What works for anyone? Thanks
    Kim

     
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    Old 05-05-2007, 12:57 PM   #2
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    Re: cortef dosing

    Quote:
    Originally Posted by ktp812 View Post
    I was wondering how you all take your cortef. I am taking 5mg four times a day at meals and bedtime. I am still waking up feeling tired and still run out of energy quickly during the day. I am thinking maybe my dose needs to be switched around. What works for anyone? Thanks
    Kim
    Are you also taking DHEA?

     
    Old 05-05-2007, 05:28 PM   #3
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    Re: cortef dosing

    I take 15mg in the morning and 10 around 2. I try to take it at the same time everyday, but its kinda hard because I am always out and about. I actually just switched yesterday to the generic version of cortef and I am actually feeling better. I have heard that some people do better with different brands. I am also going to ask my dr. about florinef, I have dhea at home but haven't taken it yet. Good luck, I hope you feel better soon.

     
    Old 05-06-2007, 11:03 AM   #4
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    Re: cortef dosing

    I am not taking DHEA. My doctor hasn't even mentioned it to me. My level was half of the lowest normal level so I know I am pretty deficient in that too. I am noticing I have some times when I am not as tired but everyday is still a challenge. I see the doctor next week so maybe he will switch my dose around. Thanks everyone.
    Kim

     
    Old 05-06-2007, 10:44 PM   #5
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    Re: cortef dosing

    Hi!

    I have been diagnosed with Addisons for about 9 months now. I have finally found the perfect dosage for me, 20mg of Cortef in the am around 0800, and 10mg at 2-3 in the afternoon. At work, I take 20mg in the am around 0500 and 20mg again around 2-3pm. I had tried Predisone for 6 months but felt like it was going crazy, unable to sleep, and so very suddenly irritable at times. The Cortef has been great.

    But the best thing that has given me the most energy has been the DHEA. I felt an instant increase in both mood and energy. The first day I tried it, I took 25mg, and had so much energy I was irritable. So I tried 12.5mg and it did the trick. My endo is aware that I am taking it (my idea not hers) so I will see what she says about it the next appointment.

    I sure hope you feel better soon. It is a day by day thing, isn't it?
    MaryAnn =-)

     
    Old 05-07-2007, 05:35 AM   #6
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    Re: cortef dosing

    MaryAnn
    It sure is day to day. I never know what I will feel like when I get up in the mornings. Will it be ok or just plain bad. I think when I see the doctor next week I am going to suggest changing my dose schedule. It doesn't make sense to me to take the same amount 4 times a day. I have had no real increase in energy at all. I am going to mention the DHEA also. I have been thinking about taking it for at least a year. Anything is worth a try for me. I am still trying to keep my job so I need to do something so that will be possible. I only work part time but that is even hard to do. I have lyme too so I am sure that doesn't help matters any. Thanks so much for your post.
    Kim

     
    Old 05-07-2007, 08:16 AM   #7
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    Re: cortef dosing

    Kim,

    I am no endocrinologist, but it does seem stange that you should have your doses strung out throughout the day. In the normal, cortisol producing body the adrenals squeeze out their biggest doses just as we awake in the am, with another boost in the early afternoon, then it tapers off to very little as we sleep. Has your MD given you a reason that they want to dose you this way? I am not as educated about Addisons in conjunction with other diagnoses, so I don't know if there is a difference in treatment.

    I seem to also be developing type 1 diabetes, thus giving me the ever-so-distinguished (tongue in cheek) diagnosis of Schmidt's, but I have no formal diagnosis at present. But that is as far as my studying has taken me.

    As for the DHEA, I read that around the world they are studying the effects of DHEA in people with adrenal insufficiency and have found that it is quite effective in improving mood and energy, plus it is also supposed to help boost the immune system. I thought, "What the heck, I'll try it!" Since it's over the counter here, it made sense. They are not aware of what the long term side effects are, so most MD's shy away from suggesting it. But it has really helped me. I also take, ready now, Vitamin C, Vitamin D, Calcium, & Super B Vitamin to try to boost my body with nutrients. All these have helped me find a 'balance' and seem to keep me going, and I need it. I have a husband, four kids, and a part time job as a nurse to keep up with!

    I hope you can get some good answers from your MD's. I'm sorry that you have to deal with both Addison's and Lyme's diseases. I hope things will clear up for you in regards to how to treat both!

    Blessings to you,
    MaryAnn =-)

     
    Old 05-07-2007, 02:43 PM   #8
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    Re: cortef dosing

    MaryAnn, Hi, have you noticed if your hair is falling out or your face is getting more hair. I'm just wondering, because my endo told me that DHEA would do this, and it really scared me. Of course he said it wouldn't do it any worse than the steriods would, that was real comforting. My endo is giving me 8 weeks to raise my cortisol levels with pregnenolone, Biotin and enzymatic supplements. I also have Lyme and the cortef can have a neg. effect on the immune system and cause Lyme to get worse, so we are experimenting with supps first, then if they don't work I will start Cortef and DHEA. He also has me on the High protein, low carb diet, that's real fun!!LOL Thanks for any info you can give, Sarah

     
    Old 05-07-2007, 06:34 PM   #9
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    Re: cortef dosing

    Sarah,

    As for hair growth, I haven't noticed anything more than what I was already experiencing with the steriods. I pluck my own eyebrows, and wow! since the Cortef, do I have to keep on top of them now! Other than that, I haven't really any qualms with it. The biggest thing is that I can potentially worry about is the unknown result of long term use. DHEA caused cancer in the lab rats, but it doesn't correlate well to humans (so I've read) because rats don't naturally make DHEA in the same way that we do, if at all. So I do take that chance when I take DHEA. But what doesn't cause cancer? I know it sounds kind of irresponsible, but compared to how the DHEA as increased my daily moods and energy, I am willing to take the risk, esp since I have a low cancer risk. But we all have to make our own educated decisions, don't we? =-)

    I am a research freak, it's just a lot of fun for me for some reason. So I looked up Lyme's dx in conjunction with Addisons. Lyme and Addisons does seem like a very difficult thing to deal with, and a challenge to balance. It seems to me that the signs and symptoms can be almost identical to each other, esp if there is no initial rash or rememberance of being bit by a tick. It's very fascinating. Have you read the internet site written by WildCondor? Sounds like a wild situation, but I am glad she is feeling better. I certainly hope that you two don't have to deal with what she dealt with!

    Blessings to you, Kim and Sarah!
    I hope and pray you can get things settled and understood soon. =-)
    MaryAnn

     
    Old 05-08-2007, 05:41 AM   #10
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    Re: cortef dosing

    Maryann
    Hey how are you today? It is a huge challenge for my doctor to be treating both Lyme and AI. He told me he could send me to someone else to treat the AI but said he preferred to treat both since he could keep on top of medications and stuff like that. I first went to him because of my chronic fatigue. I knew other things were going on because I had over 30 odd symptoms and would't take CFS as my diagnosis. I am like you..I read and search for information all the time. I love hearing from other people to get ideas about treatments and what works for them. I finally got to my current doctor(it took over 2 months) and he knew exactly what to do for me and did all the proper testing. It was nice to have someone who actually believed me. That was probably the worse part for me through all this. I didn't look sick so it was hard for any of the 8 doctors I saw to believe me. I was even referred to a psychiatrist!
    I did read Wild Condors story. I am thankful that I am not as bad off as some people. I always try to remember that when I am feeling sorry for myself. I am lucky I never had any of the cognitive problems etc. I think right now the AI is causing more problems than the lyme now. I have been on abx for 6 months and alot of my symptoms are gone as of now. I am still having the herx reaction so I know there are still lots of bacteria in me.
    I am still going to look into the DHEA and talk with the doctor. I have a feeling he just might change the cortef dosing around a little. Hopefully that might give me some more energy during the day when I need it!
    I hope you have a good day. It is again a warm sunny day in NH. I must get out and enjoy it.
    Kim

     
    Old 05-08-2007, 11:42 AM   #11
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    Re: cortef dosing

    Quote:
    Originally Posted by making777 View Post
    Sarah,

    As for hair growth, I haven't noticed anything more than what I was already experiencing with the steriods. I pluck my own eyebrows, and wow! since the Cortef, do I have to keep on top of them now! Other than that, I haven't really any qualms with it. The biggest thing is that I can potentially worry about is the unknown result of long term use. DHEA caused cancer in the lab rats, but it doesn't correlate well to humans (so I've read) because rats don't naturally make DHEA in the same way that we do, if at all. So I do take that chance when I take DHEA. But what doesn't cause cancer? I know it sounds kind of irresponsible, but compared to how the DHEA as increased my daily moods and energy, I am willing to take the risk, esp since I have a low cancer risk. But we all have to make our own educated decisions, don't we? =-)

    I am a research freak, it's just a lot of fun for me for some reason. So I looked up Lyme's dx in conjunction with Addisons. Lyme and Addisons does seem like a very difficult thing to deal with, and a challenge to balance. It seems to me that the signs and symptoms can be almost identical to each other, esp if there is no initial rash or rememberance of being bit by a tick. It's very fascinating. Have you read the internet site written by WildCondor? Sounds like a wild situation, but I am glad she is feeling better. I certainly hope that you two don't have to deal with what she dealt with!

    Blessings to you, Kim and Sarah!
    I hope and pray you can get things settled and understood soon. =-)
    MaryAnn
    Maryann, thanks for the reply. I have read the info about DHEA also, and of course scared to take it. I am also like you and research everything. I have spent years studying everything that had a resemblence to my symptoms, and i also do that with meds too. It is definately hard dealing with both AI & LD, since the meds for AI make the LD worse, its like, what do we do. We have to wait until our adrenals are completely none functional for it to benefit us to take the steriods. I had a tick embedded in my leg in 1989 when I lived on Whidbey Island. I was a Park Assistant for Wash. St. Parks and Rec. @ Deception Pass St. Park. About a month later I got really sick, but didn't put the two together. I have never felt completely like myself since then, but still not completely sure I got LD then. But another Asst. had the same thing the year before, and he never has recovered. Plus alot of babies born with LD are autistic and our Ranger's daughter was. Then in 97 here in Texas I got the Bull's eye rashes, and horrible headaches. But my Lyme test was neg. But it was just the Elisa which is crap. Spent the past 9 years trying to figure out what was wrong, and finally got the LD diag. last Oct. I have had the AI diag. for 4 years though. Lyme is called the great imitator because it has so many different symptoms, that are so much like other diseases, especially autoimmune diseases and AI. I am pretty sure that my dad has it too,they live 1/2 mile from the St Park and have spent their lives outside on the trails. He has really bad symptoms all the congnitive ones, bell's Palsy, everything has happened to him. But he insistes that he doesn't have LD. I finally talked him into asking his doc to test him and she refused saying that LD doesn't exist in NW WA. ST. She is an idiot. Vancouver BC has the highest cases of LD in all of Canada, does she think the deer and people they don't cross the border. when I worked in the St. Park half of our campers were from BC and they brought thier pets with them too. Unfortunately it is this kind of ignorance that keeps people from getting diag. and becoming chronic. I have spent the past 6 months reading and researching everything that I can find on it, it is an amazing and scary disease. Once you research it though then you start recognizing things in other people that relate to Lyme especially people who have had Mono, CFS, Fibro. My son also has it, he got his diag. 2 weeks before I did. I had him tested for the WA strains but he was neg. Not sure whether he got it from WA. or Texas.
    I hope that you are doing well, and it's not raining up there! Here's some Texas sun!! sincerely, Sarah

     
    Old 05-10-2007, 09:03 AM   #12
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    Re: cortef dosing

    Hello Sarah & Kim!

    Yes, you guys have a complicated road and you will be in my prayers, if you don't mind that I say that. As for the DHEA, I can understand why you would be cautious. In my case, it's more cut and dry. The adrenals make DHEA, and those with adrenal insufficeincy, like us, make less DHEA than the average person our age. Therefore, it can be very beneficial for us, as I have seen that it is for me. But who knows whether it would be good for the Lyme's? In my thought processes and research, the DHEA is said to boost the immune system, which I think would be good for Lyme, but I don't know! There could be all kinds of other factors that I have no idea about.

    We are in a very interesting place with our diagnosis, are we not? I went through a lot when I started this 'journey to diagnosis', but it was not as drawn out as I have read a lot of people have gone through. I beleive I have signs and symptoms since my teen years, but the insufficiency had not progressed to point of the need for meds until now. But, I have had a few things in my life that have made me well acquainted with the disease, so when I began to realize that I had the symptoms, I was able to push for the right tests and to the right doctors. I did have one MD who thought I might want a psych consult (ah - no) and one who was this close to calling me 'fibromyalgia', which I would NOT settle with. But, all in the past. I am just glad to have a diagnosis, and way to better health!

    Kim, keep us posted! I would love to hear about how the DHEA works for you if you try it!
    Sarah, thank you so much for the sunshine you 'sent'! =-) Do you know that it has been absolutely beautiful these last 3-4 days around here? Talk about getting out and synthesizing some Vitamin D!

    And this morning, another great day with the beautiful sun shining. I hope you guys have a wonderful day!

    Blessings to you,
    MaryAnn

     
    Old 05-10-2007, 06:38 PM   #13
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    Re: cortef dosing

    MaryAnn

    I have my appt. next Thursday and will discuss the DHEA with him. I don't feel as though the cortef is doing anything at all so I am kind of concerned about that. I am on 20mg and you would think it would be helping by now. I was given the name of a psychiatrist when all my symptoms started happening. I no longer see that GP since he obviously never believed anything I said. By the time I did find a doctor who did the proper testing I was really in bad shape. I had read it takes a long time for the adrenals to recover but I was hoping by now I would have noticed something. I hope you have a great weekend. The weather in NH is beautiful!
    Kim

     
    Old 05-12-2007, 11:42 AM   #14
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    Re: cortef dosing

    MaryAnn, hope you are having a good Mother's Day weekend. My mom is up, there on Whidbey, I am here in Texas. I'm glad I could send y'all a little sunshine, wish I could have hand delivered it! does your profile name have anything to do with Boeing? Just asking because my dad works @ Boeing in Everett.
    I have a few more weeks left before I have to go back to doc to discuss how Preg. therapy has been going. I noticed that I was getting very shaky and axxious. I couldn't sleep in the morning at all. Was taking the preg. at around 8 am and again at around 6pm. I was taking 50 mg twice a day. I cut that down to one just in the morn. because I couldn't stop with the shaking and wasn't sleeping as well. Like I overdosed on nodoz or something. I seem to be doing better now. It really is a guessing game, what will work, when is the best time to take it, how much. My goodness, couldn't it just be a little easier!! I didn't have these problems as a kid, it all started a few months after my first tick attachment in 1989, but I have had some stressful events happen to me along the way that have caused me to relapse. I haven't felt completely normal in 18 years but I have definately felt much better than I do now! Please both you and Kim keep in touch so we can try to help each other through this! Sincerely, Sarah

    Last edited by sarah92202; 05-12-2007 at 11:56 AM.

     
    Old 05-13-2007, 05:38 PM   #15
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    Re: cortef dosing

    Sarah,

    I like the idea of keeping in touch. We do have such a rare disorder, and yours and Kim's even rarer still!

    How are you doing after you decreased your preg down to one a day? I was wondering if you took the second dose a little sooner you might be able to sleep better at night. But I think I know what you are experiencing. When I was on the Predisone, I felt the same things you did. Sometimes I felt like Wonder Woman, able to get 0 sleep and still function on steriods. Other times I felt like I was manic, and that my self control was the only thing that kept me from running around the room screaming just for the fun of it. I finally got to the point where I couldn't take it anymore, and the MD changed me to Cortef, which has been wonderful to me.

    Whidbey Island is a beautiful Island. I hope your mother had a wonderful Mother's Day, and I'm sure she missed your presence! Thank you, I have been having a wonderful Mother's Day weekend. My husband had my 4 kids spend the night at the grandparents for the weekend, so that my Saturday was all about sleeping in, going out to eat and a movie, and relaxing. He is so good to me! Today we had both sets of Mom's over for a BBQ after church. It has been a good day!

    How about you? Have you had a good Mother's Day?
    Blessings to you!
    MaryAnn

     
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