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  • How do you know when to increase meds?

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    Old 12-03-2006, 07:11 PM   #1
    2jen
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    How do you know when to increase meds?

    I am so confused! I know it will take time for me to learn my body and to know when to increase cortef, but its still just so confusing for me right now.

    I got sick with the stomach flu on Tuesday night, fortunately I was able to keep the cortef down on Wednesday and I took double the amount that I am normally supposed to. I called my dr. and he told me to continue to do so for the next 2-3 days. Well, on Friday I went back to my normal dose and I just felt so crappy. I got really dizzy on Friday night and ended up taking 5mg of cortef and then went to bed. Still today I am not feeling 100%.

    My question is, how do you know when to take more? Do you get dizzy, tired, etc? I am basically taking more whenever I feel really dizzy and lightheaded because I take that as a sign that my blood pressure is too low which must mean my body doesn't have enough cortisol. I am going to invest in an automatic blood pressure cuff so I can check it reguarly because my bp has gotten as low as 80/50.

    Sorry, this is long and almost a vent with a question. Thanks in advance!

    Jen

     
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    Old 12-04-2006, 08:15 AM   #2
    WandaB
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    Re: How do you know when to increase meds?

    Jen,
    Are you taking Florinef? Being dizzy & having low BP is a sign of needing it. Florinef "cannot" be increased or decreased at will like some do with the cortisol replacement.

    Have you told your doctor to switch you to Hydrocortisone to see if you feel better on it?

    Are you splitting your dose into 3 times a day?

    Are you sure you had the flu...could it have been a crisis?

    Best not to get a wrist cuff. Others I have talked to say they have better results from the one that is used on the upper arm. Many of us have the Omron.

     
    Old 12-05-2006, 11:22 AM   #3
    2jen
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    Re: How do you know when to increase meds?

    Wanda, thank you so much! I usually take being dizzy as a sign that my bp dropped, and thats when I increase my cortef. I forgot to mention the hydrocortisone when I went to the endo, but I have been feeling better. I think I also need to make sure I take the cortef consistently at the same time each day. I am on cortef, and I just take more when I feel dizzy, is that bad to do? What is florinef?

    I am going to try splitting the dose, I think thats a great idea. I think I will do 10mg in the am, 5mg in the afternoon and 5mg around dinner.

    I never even considered that I could have had an addisons crisis, but I was unknowingly around someone who had the stomach flu the day before I got sick. I felt pretty lousy for a few days, and I think thats because I was trying to figure out how much more cortef I needed.

    I will look into the Omron, I think that would be an excellent investment.

    Here is another question, I am so down that I have addisons. I also have hypoparathyroidism and I am constantly being checked for other autoimmune diseases because I have a high risk of developing others. I am only 22, and sometimes I just have a hard time dealing with all of this. I take 11 pills a day, and its such a downer to think that I will be on at least that many for the rest of my life. I hate that I have to look at anything different with my body as a symptom, and I am tired to learning about all of these different autoimmune diseases. I honestly feel like I am going through the stages of grief with this, at first I thought my dr. was wrong and that I didn't have these health issues. Now, I am just angry that I am sick! How do you deal with it? I know in time I will get over it, but I would like to accept this disease sooner than later. You seem so knowledgeable and like you really have a handle on your addisons disease.

    Thanks again, its so nice to be able to talk to someone who understands what I am going through and who can also offer advice to make this disease not so bad.

    Jen

    Last edited by 2jen; 12-05-2006 at 11:23 AM.

     
    Old 12-05-2006, 08:10 PM   #4
    WandaB
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    Re: How do you know when to increase meds?

    Jen,
    I know it is no help, but there are many many people who are much younger than you with addisons. We do go through a grieving period. We grieve for the person we used to be. Once you get your meds right you will feel better. It took me about 5 years to accept the fact that I will never be the energy bunny I was before addisons & have to do less.

    It is up to you to be sure you take your meds at the same times of day...every day! First thing in the morning or an hour or so before you get up, about noon & about 5pm. Dinner or no dinner. If that doesn't work for you, try something else, but be consistent.

    Are you seeing an endo? He/she has to know about Florinef. Controls BP, sodium & potassium. Check your renin level. You get some of this benefit in your Cortef. Apparently not enough as you are dizzy.

    Info from elsewhere......
    "Fludrocortisone acetate acts on the kidney so as to conserve sodium and excrete potassium. Naturally occuring mineralocorticoids act similarly."

    "Fludrocortisone (floo-droe-KOR-tis-sone) is a corticosteroid (kor-ti-koe-STE-roid) (cortisone-like medicine). It belongs to the family of medicines called steroids. Your body naturally produces similar corticosteroids, which are necessary to maintain the balance of certain minerals and water for good health. If your body does not produce enough corticosteroids, your doctor may have prescribed this medicine to help make up the difference."


    What was your sodium & potassium levels when last checked?

     
    Old 12-05-2006, 08:22 PM   #5
    2jen
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    Re: How do you know when to increase meds?

    Thanks Wanda, you hit the nail on the head, I am grieving for the person I used to be. I am not consistent in taking the meds at the same time, and that is something I am really working on. I have to take the cortef with food, and I am never hungry in the morning so that has been hard for me. I think now that I am not denying that I have Addisons I am ready to really do what I need to do to feel better. This is horrible, but I have even skipped doses just to see if I was ok. Now that I am accepting this disease, I am doing much better at taking the medication.

    I am seeing an endo, I was going monthly for the past 3 or 4 months but he just stretched my next appointment out to 3 months. I know my potassium levels were high before I was diagnosed, but after taking cortef they are back within normal range. My sodium levels were low, but have always been in the normal range. I wish I knew the exact numbers, but I am thinking he doesn't have me on florinef because the numbers are ok? Everytime I have bloodwork done he has all of my electrolytes checked. I also don't think I drink enough water, so that could also make me more dizzy since I already have bp problems. I think I will start feeling better once I start really taking care of myself!! I am making a promise to myself to take the medication consistently and to drink lots of water!

    Wanda, thanks for listening. I feel so much better after reading your post. I was just so active before and this is just hard to deal with. I am glad that I finally realized that I was grieving for myself, now I can deal with this disease.
    Oh, and I looked into the bp cuffs and I found a really nice one that was the orion brand that I am going to get.

    Thanks again!

    Jen

     
    Old 12-05-2006, 09:03 PM   #6
    WandaB
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    Re: How do you know when to increase meds?

    Jen,

    You can take your Cortef without food. I take my first 10mg about 6am while still in bed....no food. Noon dose is with food most of the time. My 5pm dose is usually taken before dinner is ready. Waiting for food used to screw up my schedule.

    You can't mess with addisons. If you have it the meds have to be taken unless you have a death wish.

    Are you craving salt? Are you primary or secondary?

    Ask your doc to print out copies of all your lab work so you can have a file at home to refer to. I have a folder & just put the latest in the back. What ever works for you is best.

    Good that you are increasing your water. We need lots of it. I have water next to me 99% of the time. Even during the night.

     
    Old 12-05-2006, 10:43 PM   #7
    2jen
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    Re: How do you know when to increase meds?

    YOU CAN TAKE IT WITHOUT FOOD!!! Thats been one of the hardest parts of taking the cortef, even with my afternoon dose! Why does the bottle say to take with food? I guess I have been too scared to try it without food, but I will tomorrow. That will help me take it at the same time everyday. I am craving salty foods, like potato chips, but not often (maybe a few times a week).

    I am not really sure if I am primary or secondary. I had an MRI and everything came back normal, my endo then tested all of my hormone levels that deal with the pituitary and he said that it seems that my pituitary is functioning, but not 100% correctly. I had problems with growth hormone as a child and actually was put on the growth hormone steroid for 5 years. I know my estrogen came back really low but that could also be due to being on birth control for 5 years. I am actually seeing my gyno on Friday so that is something I will ask her about. I also have hypoparathyroidism, there seems to be a connection to that and addisons in children and I can't help but wonder if they are somehow connected in me.

    I will make sure to get a copy of my records, it would be nice to know my exact levels of everything. Maybe I will go there tomorrow and request a copy, my endo is only 5 minutes away.

    Thanks again Wanda, you have helped me more than you know!

     
    Old 12-06-2006, 08:14 AM   #8
    WandaB
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    Re: How do you know when to increase meds?

    Jen,
    I learned I could take replacements without food from others, but if you have a stomach problem or it bothers you....grab a soda cracker to eat with it.

    You really need to get some Florinef & start with 1/2 a pill & see how you feel. If it is needed it will make you feel much better. Your endo should be on top of this!!!!!!!!!!

     
    Old 12-06-2006, 08:57 PM   #9
    2jen
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    Re: How do you know when to increase meds?

    I tried the cortef without food today, and I took it in 3 doses....so far, so good! I will definetely ask my dr. about the florinef. Thanks again for everything, I would be so lost without this board.

    Jen

     
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