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Addison's Disease Message Board


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Hi, can anyone please tell me what has helped them in regards to how and when to take cortef including stress dosing w/ mental and physical stress ect.

I have been taking 5 mg every 8 hours which equals 15mg per day for the last 6 months. This new treatment has had a profound effect on my life. I have spent most of ther last 5 years in bed or whatching tv, not working diagnosed w/ depression. Now I am back to my old self but sometimes I do feel run down. Could additional cortef help with this? I'm also on t3 and t4.

Any input would be greatly appreciated. My family doc is not experienced in this area.

Thanks!
Hi Mr. Sleepy
15 mg. is really on the low end of the typical dose. Normally, between 20 and 30 is considered standard, so it's possible that you are not getting enough replacement hormone. Sounds like you need a good endocrinologist who is experienced with Addison's. Stress dosing is a little more complicated. Personally, I have not found the need to up my dose for anything (I have had AD for four years), but some people are very brittle and need to increase the dose for just about any kind of stress. Again, it sounds like you need a doctor who knows what s/he is doing, and I wish you good luck in finding one.
HI Gettnbetter,
Thanks for the advice. I plan on seeing a good endo in the next month or two when ever they can fit me in. If you don't mind me asking, how do you take your cortisol replacement?

Anyone else have advice on hydrocortisone dosing schedules?
I read some take:

10mg in the am
5mg at noon
5mg before bed

Thanks, Sleepy
The schedule you mention is a good one for cortisol replacement. I take 15 mg. in the a.m. and 5 about 5 p.m. It seems to work for me. I have also taken 10, 5, and 5, as you suggest.
Hi Gettnbetter,
Thanks so much for your helpful information.

Sleepy
Thats the same dose I take it works for me.
OK, Thanks NJ.

Sleepy
I take 20mg in the am and 10 in the afternoon. I slowly worked up to that amount, starting with 10 in the am and 5 in the afternoon, then 15 and 5, then 20 and 5, and finallt 20 and 10 and it seems to work for me. I do still have days where I feel run down, but I also have Hashimoto's, and it could have something to do with that.

Does anyone have a problem remembering to take their medication around the same time each day? I don't always wake up at the same time and sometimes forget and take it later than normal in the afternoon.
HI Mr. Sleepy- I hope you can try this- I think it would be a great idea to change to a Dr. who is familiar with it because it can really make a difference. It made a HUGE difference for me. I dont have Addisons- I take it for Chronic Fatigue and Fibromyalgia. It has made more difference than anything I have tried so far.

So since I dont take it for Addisons, I dont know for sure about dosages for that but for you but I would assume you can probably take more than I do- which is-
15Mgs total a Day. I take two 5 mgs when I first get up and then 1 more several hours later on. My Dr. said (in my case) I can go up to and no more than 20 mgs a day if I need. But again thats for CFS and Fibro.

This stuff is worth a try! Hopefully you can find a Dr. who knows about it. Its not rocket science- so it should be fairly easy.

P.S. I can relate to staying in and not able to do anything. etc... Its really really hard and I wish you all the luck in the world to feel better! :wave:
LFH
Hi 2Jen,
I don't have a consistant sleep/wake pattern and I know what you mean, its hard to take cortef at the same time each day. Oh well?

Sleepy
Hi LFH,
Thanks for your responce. It's been a horrible life since 2001. I found cortef about 6 months ago and it has changed my life. I wish my many drs would have suggested this years ago. Have you had any other successful treatments for CFS?. The FFC perscibes my cortef, I'm not sure about all their supps but I'd be willing to try them if they can help.

Sleepy
Mr. Sleepy,

Sorry I'm slow to post on this... I've had a couple of "bad" days. I'm currently on 40mg... that's 25mg AM, 10mg noon and 5mg suppertime. Me and my MD are wanting to pull that down, but I haven't really stabilized in the last few months. Now even for males, that's on the high end. We've wondered if I'm malabsorbing or something, but that test came back negative.

I am one that goes up or down based on physical or emotional stress. My MD told me to increase (up to double) the dosage if I get sick, for instance. Most others, web sites, etc., will tell you the same. I try to keep to a stable dose, but about once every 2 weeks, something comes up... extra work stress, a head injury once a few months ago, a trip to Disney World, a visit to the dentist... all knock me for a significant loop (think weak, shaky blob of protoplasm) if I don't increase when I recognize the stress. I have begun using the analogy of an automatic transmission vs. a standard. If your adrenals are working, you've got an automatic transmission that takes you into the "fight or flight" mode. You don't have to worry about it... your body just does it. If your adrenals aren't, you've got to (1) recognize that you're insufficient and (2) evaluate a proper up-dosage and take it.

BUT you don't want to get your body into the habit of taking more than it needs. It's tough to pull back on the dosage. And higher dosages harm the body. Take only as much as you need, but no more.

Now... even if you're on 15mg/day, you should consider a Medic Alert bracelet or tag of some sort. I was on 15mg/day and had minor surgery 18 months ago... ended up in the ER with adrenal-related complications. A car accident or fall from a ladder, or even a missed day of meds could drop you into adrenal crisis, if your body is used to getting the 15mg/day orally.

I'm glad you've gotten some degree of your life back! Keep working with your Dr and if he/she is not helping, look for someone who understands.
HI Cloud2,
40mg, wow you must not have any adrenal functions at all. Thanks for the sound advice. I'm trying not to take too much cortef and I also have been thinking about getting a bracelet just in case something bad would happen. I'm seeing a good endo soon. I'm hoping she can tell me how to feel better in the AM. It takes me 2-5 hours to get going after I wake up. I'm guessing I have secondary adrenal insufficiency due to hypopituitaryism or hypothalmus disregulation. All my hormones are low. I'm just so glad I am on cortef now and not suffering so much anymore.

Sleepy
Well Mr. sleepy, maybe we can compare notes because I go to the FFC as well. I have Fibro/ CFS / hypothyroid/ Adrenal exhaustion / anemia/and they have suggested some things, but I have done alot of my own research about alot of this stuff. I too wish another Dr. would have RX'd this years ago - about 2002 or so is when I was diagnosed. It would have made a big difference for me but instead I was first given heavy pain meds for Fibro. Well I didnt care at all for that, so I took myself off of all that stuff. I did me NO good. Anyway, what I do is I think of something I want to try and then ask my Dr. to see if its ok ( supplements ) and I try it. I have tried many- right now I am on a combo( I kinda play around with doses etc ) of things. Some maybe you have tried?

I take: "Amino acid blend"- sometimes switch up with just the " L- phenylalaline" and "L-tyrosine" alone- "Omega 3.6.9 fish oil" "Acetyl L Carnitine and Alpha Lipoic acid" (in same blend) "5 htp" for help with Seritonin production "Dopa bean" for help with Dopamine production ( they are now saying Fibro may be caused by low Dopamine production- although I dont think its JUST that only, there are many factors I think contributing. A good Iron supplement- Vit C and B-12 to ehance absorbtion of the Iron as well as good for many other things- ie Vit C helps to fight EBV ,good for immunity healing etc ( for CFS) Of course a good daily vit -" Pantothenic acid " "Vit D" for fake sunlight (ha ha- up here in Pacific Northwest we dont get alot of sun I gotta do what I can :rolleyes: ) of course Cortef ( FFC rx's that for me too) it seems like I forgeting something... I have tried Ginseng but it didnt do a thing for me ( but Acupuncturist that I work with said she would give me the REAL Ginseng not the kind in the drug store so I may give that another chance) I tried Provigil-- not a THING felt there. :confused:

As of now, I have been taking this combo for about 8 weeks. Seems to be pretty good. I think what has been most helpful are (Cortef) and Acetyl L- carnatine/ Alpha lipoic combo- Amino acid complex or amino acids seperately- Dopa Bean- Pantothenic acid - and getting Iron back up.
I hope you can try some of these things mentioned because you never know what might help in your own case. Oh wait ,I want to clarify I have been taking the Cortef alot longer (about 1 and half years ) . If you have any questions I will glady help. I still struggle the most I think with CFS and the FATIGUE involved. My pain has gone from about an 8 to about a 1 so I am very thankful for that, I just have this fatigue problem. I takes all I can do to go to work ( massage therapist) at least I can set my own hours so thats very helpful when all I can do is stay home in my scooby doo jammies and I getting pretty tired of that - Ill tell ya. :yawn:

What do they have you on over at the FFC where you are and what do you think of the clinic/Drs ? Have you tried anything that has helped you besides the Cortef? Its great to share ideas with as many people as possible, Ithink.

Hope you have a great one~ ~ LFH
Sleepy - I know what you mean about having a good day and you might think you are better or that you forget its there at all - then it says BAM hello!

I was wondering what you thought of the Iv's for energy ( Im not sure what they actually call it). Have you tried anything like that?

I tried Well butrin for energy- I helped some - not alot but some so I still take that. Tries Cymbalta for Fibro (anti d) that was horrible.

I have heard latley about people using stimulants and Dopamine meds- I may try that next. If I could just get some energy I would be doing pretty good.

Sorry your feeling so rough -feel better soon- LFH
Thanks for reminding be about the FFC, MrSleepy. I called a couple of weeks ago and made an appt here in Dallas. My MD has helped me along for a couple of years now, but she's not been able to tune the combinations just right. I'm hoping they have more experience there.

How are you doing?

From your last post about getting sleepy in the evening, I got to remembering about how I'd drop out of consciousness by 9pm or so... for the last decade or more. I always said that "I fall asleep by 9pm whatever I'm doing, so I figured a long time ago it was best to get to bed for it." Well, about 6 months ago, I moved 5mg of my Cortisol to suppertime, wary that it might interfere with my sleep. No (additional) sleep problems, and the nice thing is... I can stay up until 10 or 11 now, no problem. That in turn makes my sleep a bit deeper because I've held it off.





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