Cortef/Hydrocotisone

What mg. of hydrocortisone are on? I am taking 10mg in the AM and 10mg in the evening and doing well. I feel better.

Before I even considered taking it myself, I read, researched, and asked other people with Lyme Disease that was taking hydrocortisone, what dosage was best. 20mg a day is the standard dosage that is given to Lyme patients. In a prednisone(steroid) pack, the dosage can get as high as 60mg, so 20mg is pretty low. I've read that hydrocortisone at 20mg is actually lower compared to 20mg of prednisone.

What are you taking it for? I'm on it for Adrenal Fatigue and my doctor also thinks that my immune system is going haywire. I have noticed that when I start getting tired around 3:00pm, that if I take my meds then, it perks me up a little and I'm not so tired anymore.

Also, don't ever stop hydrocortisone or any steroid cold turkey. You should always wean yourself down slowly.

Hi Scorpio,

I'm a Scorpio too!

Do you know what your am cortisol levels were? This crappy disease wreaks complete havoc on the adrenals. My lowest levels at my sickest point were <.5 am and normal is 4-22. I was at one point diagnosed with Addison's Disease but as we all know, we are going to get a handful of diagnosis' along the tx journey. I did have to take dexamethasone prescribed by my endocrinologist for awhile but it was VERY reluctantly on my part considering steroid injections made my Lyme come to the surface initially. I'll be honest with you, I did not take every single dose.

Once I got on the treatment that worked for me (Vanco/Flagyl) and my levels rose a bit, my LLMD instructed me to stop taking it. I got my LD into remission pretty quickly after that and my adrenals rebounded on their own. In fact, at one point I saw 5 specialists for the various effects of LD, including a cardiologist. I haven't needed any of them after successful tx.

My recent relapse was caught quick and my LLMD is attacking aggressively again with Vanco/Flagyl and I already feel better after a week of tx. My protocol is 2-4 wks but I plan to stay the full course and more if necessary to ensure this is back in remission. My LLMD feels that either stress or a herniated disc caused the flare.

Keep your chin up, your adrenals will rebound. In the meantime, if you have a reputable LLMD that advises you need the Cortef, I would take it.

Best of luck to you!

Anne

I just read on-line that there's an interaction between hydrocortisone and oral rifampin (300 mg. 2 x per day) which I'm also taking. Of course I panicked and immediately called the pharmacist who said that while taking rifampin my body will only absorb 40-50% of the hydrocortisone. I think this makes me feel a little better about taking the hydrocortisone but who knows.

BTW, how long will it take to feel the results of the hydrocortisone? Will it be immediate? What time do you take your second dose of the day?

I never would have guessed a year after beginning aggressive treatment my mind would still be so scrambled...lol!

Post Edited (scorpio1960) : 4/10/2010 7:36:37 AM (GMT-6)

I'm sorry, but I am confused. (surprise surprise). I think I asked this before, but can't remember... sorry....

I thought, that in my research on Lyme, I'd read and heard several times that steroids are really bad for lyme and they can make it a lot worse. Now, I'm seeiing some of these discussions on hdyrocortisone.

I am treatmentless at this time, but am preparing to make appt w/ a Dr or Endo about my thryroid and adrenal fatigue.  I feel like my adrenals are about my worst symptom right now besides the back and neck pain (went to a chiro yesterday to start looking at that).

I have not seen much other treatment for adrenals besides steroids of some sort, and except 'supporting' them w/ proper diet, etc.

I agree w/ you scorpio --- I am constantly overwhelmed just by daily life and if the least thing pops up, I fall apart.

And CG, you said you start getting tired around 3 pm every day.  What's been happening to me is a black depression starts up around 4-5 pm each day. That's why I feel it's physically caused. It is at times unbearable and it's scary too. I think about the 'S' word a lot. Even tho I know I don't really want to, it is scary that the body can cause the  mind to work these tricks on us.

 On my old lab tests where LLMD pointed out low adrenals, he wrote 'happy' -- meaning these can affect your feelings of happiness. The hole I go into is very dark. Unfortunately, I've alo figured that this is a part of the 'Mike's' problem. (hard pomegranite punch).  Physically, I crave that sweetness, mentally, I crave that temporary mood relief, and physically, I crave the pain relief.

Anyway, my main question is just the one above -- about adrenals and steroids.  Because I'm really scared of steroids. Yet I really need help w/ my adrenals --it feels like the moods they're causing are preventing me from moving forward w/ any kind of positivity. (is that a word)

Please tell me about this development -- steroids vs lyme.  Need not be complicated or detailed, just the general idea, OK?

Scorpio -- I have not made the appt yet, but I will either go to the endo recommended to me by my daughtinlaw, or back to the first PCP I saw who had prescribed thy meds. (I did not go back for this because I had gotten into a LLMD).

Currently, no one that I will see will be knowledgable of Lyme. (at least the Chrio believes in it) So once I get new labs, I'll have to do research on it. I'm just desperate to get out of this thy/adrenal mess I am in. I have JW's book on Adrenal Fatigue and I can't even get the motivation to read it, but will do the best I can....

I am STILL on an LLMD's waiting list (been 1 year now) and called them this week. They said maybe in another month or so.

Agreed, Scorpio -- I had been treated for recurring depression on and off for about 30 yrs. NONE Of my WORST bouts was ANYTHING like this -- there is a very distinct difference, isn't there?

Hi scorpio,

I'll tell you my personal experience in the hopes it may help you. I took the "spit" test with four samples. Results were that I was very low and suffered adrenal fatigue. Docs put me on small dose of Cortef to see what would happen. The dose for me started very low because I am sensitive to lots of things----and even small changes can seem to throw my body into a crisis. The largest dose they would put me on was still only 10 mgs Cortef per day. They said that at 12 mgs. it can actually suppress the adrenals, and we wanted to simply give the adrenals a "rest", support them with supplements, and see if they would "come back" and work. I took the 10 mg. Cortef for about 7 months and never felt any improvement. Then the docs weaned me off. Maybe the dose was too low to make a difference but I was scared to go higher anyway, fearing a lyme flair. I think other people have had good responses to small doses of the steroid.

Next they tried putting me on thyroid med----from a compounding pharmacy, that makes up capsules for me of T3 only. Wow, after they worked up my dose slowly, to 30 mcg, I felt alive again. For me, I went from the "walking dead" to feeling like I actually had some rest and could do things again. It was an extreme positive for me. Before treatment, my thyroid had tested right at the bottom of the normal range, and other docs would not treat me for anything. My lyme docs were more understanding and willing to try things to help me feel better. I am so glad they did!

We are all individuals and it seems no two of us react exactly the same. The same docs tried these methods on my daughter and none of it helped her at all. We both are planning to see an endocrinologist that our lyme docs think highly of. I met him when I took a friend of mine to see him and I liked him. He seemed very knowledgable and creative. Nothing like other docs and endos. that I have seen in the past. The others were useless, and did not seem to know much or how to answer my questions.

Best wishes to you. I hope you find the help you need.

bablymers mom

Hi Val -

Just a couple of thoughts.  Could you start off with 10 mg/ day for a while to see how it goes before you step up to

10 mg x 2 per day?

Also - when I took cortef - right before Lyme was confirmed - my depression really tanked and I ended up hospitalized.  The staff psych thought cortef could really have aggravated the depression.  Just something to watch for. 

An endo told me that people with real problems with low cortisol usually show a fast response and feel much better when they take cortef.

Have you had the ACTH challenge test - it looks at your ability to release cortisol in response to the hormone.  That's the other part of the question - can your body supply cortisol when it's needed.

 

Question: in considering a 'regular' Dr, is there no 'little pill' we can take for adrenals that is not a steroid--- ex: comparable to thyroid meds?

I am personally getting really sick of problems that can only be helped by alternative medicines!!!!!

Agmaar,

Thank you for the explanation. I am sure that her doctor knows what tests and medication is best for her.

I haven't been on here in a long time but had to reply to this post....DO not take the cortef for your adrenals. I was given cortef over 3 years ago after I had the saliva test. My levels were totally flat so the doctor put me on 20 mg daily.

I now suffer from adrenal supression and the endocrinologist is trying to wean me off the cortef. It has been a terrible nightmare trying to get off this stuff. She told me I never should have been on it and that only people that have Addison's Disease should be taking it long term. Just because our levels of cortisol are low is not Addison's Disease.

I have gone through H*** trying to get my dose down low enough to have the ACTH stim test. PLEASE before you start on the cortef have this test done. It will determine whether or not your adrenals can replensh after stress. They actually stress the adrenals out and see how quickly they recover. The endo said this test should have been done on me.

I know we all want to get relief from the horrendous fatigue but in the long run it will cause supression. I am very angry at the doctor who put me on this because I didn't know any better. Now I am suffering once again.

See if you can get some natural adrenal support..I wish I had done that.

It has taken me 6 months to cut down 5mg..I am still on 10mg and everytime I try to cut down another 2.5 I crash terribly.

Kim

I will definitely speak to the internist tomorrow too. The last thing I need is more problems. Thanks for responding.