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Is this what it's going to be like from now on??

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Old 01-05-2007, 01:12 AM   #1
Military Mama
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Join Date: Oct 2006
Location: texas
Posts: 28
Military Mama HB User
Is this what it's going to be like from now on??

Today was day 2 on the prednisone. (I know, I know, I have to give it a chance) I woke up feeling like I've been run over by a truck and accidentally took too much when I first got up at 9:30AM. (I was supposed to take 2.5mg and I took 1.75 too much... an extra half a pill... just too groggy to think straight.) After about an hour and a half later (11AM) I felt great. Got myself together and went to run some errands.

At 2PM I was standing in line at a store and started to get very stressed. (It was a long line, so my mind wandered to financial concerns, sick mom concerns, etc) I got myself pretty worked up. By the time we left, I was really feeling sick. Heavy, exhausted, nauseated, dizzy, etc. I wanted to go home, but I had to take my daughter to get a shot.

By 3PM we were at the drs office and I felt like collapsing. I wanted a nap so much. On a hunch I rubbed a ton of hydrocortisone cream (about a tsp) on my arms. By 4, I felt fine again.

Went to another store, went home, made dinner, put away groceries... then hit another wall at 7. I gutted it out until 8, then took my nightly dose of 1.75. Again, it took an hour and a half for the prednisone to kick in, but when it did I was rolling right along.

Is this what every day of the rest of my life is going to feel like? What a freaking rollercoaster! Here I took more than I was supposed to and I still couldn't make it from one dose to the next. How long does the prednisone do it's job anyway? Is it supposed to go for 12 hours? Am I not getting enough? Is it just too soon to tell?

Or, is this just what it's like to live with Addison's? Make hay until the sun shines, then hit the wall over and over again.

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Old 01-05-2007, 05:48 AM   #2
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Join Date: Sep 2006
Posts: 145
2jen HB User
Re: Is this what it's going to be like from now on??

For me there are days when I can go all day and feel great and other days where I just want to sleep all day. I know exactly what you mean by feeling like you hit a wall. I usually start to feel really tired around 2 pm, my body feels heavy and all I can think about it lying down. Like I said though, this isn't every day. I have also noticed that if I overdo it one day I will feel really tired the next.

Old 01-05-2007, 06:58 AM   #3
Join Date: Jan 2007
Location: Uxbridge UK
Posts: 26
koyla86 HB User
Re: Is this what it's going to be like from now on??

Some breathing will definitely help.
Take a long deep breath through the nose and then breathe out slowly. Do this for 5 minutes three times a day.
If you can do this and it helps, then I will mention other breathing exercise which will help even more.

Old 01-05-2007, 08:47 AM   #4
Join Date: Feb 2004
Posts: 342
WandaB HB User
Re: Is this what it's going to be like from now on??

Military Mama,
Do you have primary or secondary addisons? Knowing this would help to determine if you need Florinef. Has your renin been checked to see if you need it? I am wondering why your doc put you on prednisone as it does take longer to work. It lasts longer in your system. Not sure about the hours.

The timing of your dosing is way off. Your body needs its first dose of cortisol long before 9:30a.m. Taking it about 6am while still in bed would make you feel better when you get up. A normal body releases the first cortisol around 3am. You should take the last dose about 4 or 5pm. Some take it earlier if it keeps them awake. I just don't understand why the doctors are so far off with treatment for addisons. If you were taking Hydrocortisone you would get a faster cortisol response.

I already mentioned you need 1mg tablets if you plan to stay on prednisone. Most people are started on a higher dose when first diagnosed & then taper when stabilized.

Breathing is a really good thing, but does not replace cortisol.

Old 01-05-2007, 11:33 PM   #5
Military Mama
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Join Date: Oct 2006
Location: texas
Posts: 28
Military Mama HB User
Re: Is this what it's going to be like from now on??

Today was better, but then I took it really easy. I relaxed, managed to pick up the house and I *did* breathe. But still, up and down, up and down. While I'm still adjusting to the medication am I supposed to be resting or trying to live a normal life?

As for tests: I've had AM cortisol, ACTH serum (not stimulation), electrolytes and CBC. That's about it. The final diagnosis was made by my symptoms and response to steroids. I've got the elevated K, the decreased sodium, the pigment marks around my eyes, lips, groin, armpits and waist. I've had hyperkalemic paralysis multiple times and persistant low blood pressure. After my son was born I had every symptom of an Addisonian crisis. It took me a year to recover. I've been so weak the I was wheelchair-bound. My gyno says the Addison's explains my persistant lactation, but I haven't figure out *that* connection as of yet. I had a mysterious year of no menstral cycle followed by 5 years of long, irregular cycles. Muscle spasms, tachycardia, palpitations, you name it.

And it all went away with a steroid shot. Heck, I even lost 13 pounds after the shot. Turns out that what we always thought was water retention was massive inflamation that would never go down.

The doc tells me that he'll be able to tell me if it's primary or secondary with the AM cortisol and the AM ACTH draw. I don't buy it.

I have to stay up until about 2AM with my son every night so that's why I'm on the weird schedule. I don't wake up until around 10. (plus or minus an hour) So my 10AM is a "normal" person's 7AM and my 2AM is a normal person's 11PM. So, if I take my second dose at 3, it's like taking it at noon.

I'm upset about the prednisone. I've never done well on it when I've tried it over the years for different things. It's like I trade a half a dozen problems for a half a dozen new ones. The Kenelog and hydrocortisone feel perfect to me with no obvious side effects. I'm frustrated with my dr for blowing me off and giving me prednisone even when I told him it made me feel like crap and requested hydrocortisone. *He* was listening to an endo consult that is soon to be my new dr. I'm shopping for other options.

I can't thank you all enough for helping with my confusion and frustration. I do need to do more homework. (and I've done a lot!)

Old 01-06-2007, 03:29 AM   #6
Join Date: Jan 2007
Location: Uxbridge UK
Posts: 26
koyla86 HB User
Re: Is this what it's going to be like from now on??

MM well done. You breathed and relaxed. Now I will take you to next stage which will relax you and help in transporting more oxygen around the body.
Do the following breathing exercises known as Yoga Pranayam.
Bhastrika - Take a long deep breath into the lungs(chest not tummy) via the nose and then completely breathe out through the nose.For one minute, 5 to 9 times a day whenever you remember.

Anulom Vilom - Deep Breath-in through left nostril keeping right nostril closed
then - Breath-out through right nostril keeping left nostril closed
then -Deep Breath-in through right nostril keeping left nostril closed
then - Breath-out through left nostril keeping right nostril closed
and repeat this cycle for upto 15 minutes. Maximum 3 times day.
This will definitely relax you and your mind and body and after a few days you will be able to reduce the steroid dose.You will know when.
Tips : Breathe into lungs not into stomach. Do not hurry. Do it slowly. Rest whenever needed (in any pranayam).Can be done in sitting position, standing or lying in bed(if bed-bound).Keep tissues handy, as a lot of mucous from lungs will be coming through the nose. Do the pranayam before eating.
Pranayam is about getting more oxygen into the lungs and sending it around the body via blood to aid in body repair. With extra oxygen more platelets and red blood cells are formed to build up the immune system.Extra fat is burned to reduce weight. All this happens naturally without side-effects.People with all types of ailments including incurable ones will benefit. This has been practised by sages, but has been simplified and brought to the masses by Ramdev.
Keep doing your normal work as pranayam(breathing) will become your relaxation and body repair. Keep a note of when and how long you do the pranayam. Please do ask, if you are unsure.

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