Pred / Adrenal Glands

Hey there...me again.

Have a question:
Today was my "drop day" for prednisone. Went down to 10 mg from 12 mg. Next week I will start dropping by 1 mg.

First question:
Do you think dropping 1 mg/week is ok, or should I go every two?

Second question:
I've been on prenisone since July 2007. Which means that, by the time I get down to the point where my adrenal glands should start kicking in again, I will have been on it for, at minimum eight months. How do I know if my adrenal glands start working again? Do they do some kind of test?

It never occurred to me that they might not start working again until I read something on here about it.

Thanks for any insight...
~Kim

I have never tapered that slowly coming off prednisone. I was on pred for over a year and was off in a matter of weeks. I started back on it late July/early August 2007 myself at 5mg then in late October was upped to 10mg. I went down to 7.5mg for 10 days and am on 5mg now (went down yesterday). If you had been on less than 10mg I would say faster would be okay but it is anything over 10mg that tends to shut down the adrenals. Yours should begin picking up the slack when you get down to 7-8mg. So it actually won't be quite so long as you might have thought. You can tell if you go down too fast- you will feel awful. I have had that happen once- turns out I had an infection at the time. I have been lucky and only had to go over 10mg for fast bursts (dose packs). I wish you luck. Given my experience is 10mg or less wait for some with experience at higher doses to drop by before you decide anything. Just know if you feel horrid/like you are flaring you need to call the doctor RIGHT AWAY because it is likely your pred needs to go back up again.

Hey girl,

 

Yep, you got it right.  Once you hit 10mg, the taper needs to be the same, slow pace, at 1mg or even .5mg every 2-2.5 weeks.  Ive had a lot of experience with prednisone at many different doses, and my rheumy always makes sure I'm doing a taper very slowly when I'm under 10mg. 

 

It's really important to not shock your adrenal glands. That causes adrenal fatigue, which essentially will cause you to be on prednisone forever - because those little almond shaped glands just stop working.  Too much up and down and all around.  They don't like that!  The only way to really know if you have adrenal fatigue is to get a blood test done.  It checks your cortisol levels.  Sometimes, it isn't the use of prednisone that stops the adrenals from working.  Lupus itself can cause that to happen all on its own.  Which is why so many people with lupus are on prednisone.

 

So, here's the formula for you.  Whether you're on 60mg or 10mg, try tapering down every 2.5 weeks or longer if you need to.  Always do no more than 2.5mg every 2-2.5 weeks.  When you hit 10mg, taper .5mg - 1mg every 2.5 weeks.  You'll have less chance of a flare up, and it will be WAY kinder on your adrenal glands in the long run.  If you feel like poop, stop!!  Go back up 2.5-5mg and stay there until you feel well again.  Then give your body an extra 2.5 weeks to really let the prednisone work on the inflammation.  Then try the taper again.  You might find that your best dose to keep everything happy and calm is 10mg.  Maybe it will be 7.5 or.... let's be really positive and say 2! 

Sound good?!  I've been using that formula for almost 8 years now, and for 4 of those years I was in remission!  I only took 2mg a day for maintenance!  So it can happen for you too.

 

With your plaquenil and methotrexate, hopefully your pred dose will be nice and low.  But that's hard to say.  Each lupus person is different.  I know that I'll be on prednisone my whole life.  It's my life saver! I'm okay with that.  Whatever we need to do to get our lives back, and stay well!

 

Keep asking these great questions.  Lots of people will be wanting to know the same thing!

(((hugs)))

Ginny 

Hi Redrose,

 

You bring up a good question.  I think a lot of doctors just don't realize how destructive a quick taper is to the adrenal glands.  Honestly, I think that's it.  They might also not realize just how sensitive our bodies are to all of the inflammation we have going on.  I think that if they had to live in our bodies, they'd be a lot more hesitant to tell us to get off the stuff fast!  We know how different we can feel with even a 1 or 2mg change in our dose, right? 

 

I think it's irresponsible for doctors to judge our past tolerants to a taper, with how we are currently.  Our disease process changes all the time, even without us knowing it.  I think each taper has to be custom designed so-to-speak!  That's why a slow taper of 1-2mg every 2 weeks works.  It's taking small baby steps that the body can manage.  So each time we do a taper, if we can stick to that regime, we shouldn't get flare ups.  We'll be able to tell right away if we need to go back up just that small 1-2mg amount.  It really keeps the adrenal glands from freaking out!  Almost like yo yo dieting.  It just doesn't work.  Yo yo prednisone use doesn't work either.

 

I know your situation now Redrose.  It's really too bad you have to come down so fast.  I wish you had more time to take it slower.  But I understand.  I think in the future, you should really talk to your rheumy about the tapering you do.  You might have better success in the future with your lupus, RA, etc. Keeping that dose as small and stable as possible will help your fibro too. 

I hope this is encouraging for you all.  Prednisone is a very powerful medication that has to be managed with gentle intentions.  If you're in doubt about the care you're receiving from your rheumy, please talk to them.  Each rheumy will treat prednisone differently too.  There needs to be a better standard to the way it's prescribed.

Ginny 

 

 

 

 

Hi Kim:

First off let me welcome you. I'm Barb and I've been on prednisone for 7 years. I hear ya about the weight gain I've put on 35 extra pounds since starting my pred 7 years ago. More than the weight has happened to me I've developed Cushing's Syndrome, I've got such a round "moon" face, hump on my back, and big round fat tummy. This is one side effect of pred, and it will never go away until I'm off of my pred. I've tried to taper so many times and I've taken just about every drug available to treat lupus. I even took cytoxan and ended up with blood cancer as a result, so I'm dealing with that issue too.

I just wanted to pass on some words of encouragement. you're a wonderful person even if you've got a little extra weight on you. Remember it's the person on the inside that counts not the person on the outside. I know it's hard to look at the stranger in the mirror, but your health is most important and if you have to sacrifice a few pounds to be healthy than so be it. There a several of us here who carry around extra weight and we'll all be here to support you and cheer you on. Just remember the most important thing is you physically feel well and as you physically feel well you can deal with the emotional feeling. I just wanted to say keep up the good work and if you need to slow down your taper it's ok. Your health needs to come first for you to feel best in the long run.

Wishing you the best,
Barbara

I tapered from 30mg to 10 in one week -10mgs every three days. Then my rhuemy started to really slow the taper and was absolutely adamant about me not going faster or missing a dose for any reason. She told me I would be sicker than I have ever been before in my life, everything would hurt and I would probably have nausia and vomiting and I can't remember all of the things she said but I don't mess with this stuff I do exactly as I am told.

Hey everybody...

Thank you so much for your words of encouragement...

I don't even know what to say...  I've put on almost 20 pounds so far.  Last night, I saw some pictures of myself from Christmas and about fell over.  I had to go buy a new winter coat the other day because I'm too fat to zip the one I have.  I need to start walking on a regular basis.  I just haven't had the energy.  Which, I know is a catch 22...because if I would start walking, I would probably have more energy.

Right around Christmas, I ran into a lady from my church at a store.  She just had gastric bypass surgery so, she's lost a lot of weight recently.  She is also a nurse.  Anyway, she looks at me and says "your face is really puffy".  I replied "yes, I'm on prednisone".  Then she says:  "I told Barb...she has moon face, I'll be she's on prednisone!". 

It really ticked me off.  Mostly, because she's a nurse and should realize I didn't need to be reminded what I looked like.

Part of me wanted to be a real jerk and say:  OH MY GOSH!  I'M SO GLAD YOU TOLD ME BECAUSE I HAVEN'T LOOKED IN A MIRROR FOR FIVE MONTHS!  THANKS FOR LETTING ME KNOW!

As far as the bone stuff.  I take Caltrate-D twice a day which has:

600 mg calcium, 400 IU Vitamin D, 50 mg magnesium, 7.5 mg zinc, 1 mg copper and 1.8 mg manganese per dose.  And, I know without the lupus drugs - I'm not here for long. 

I also take a multi-vitamin.  Other than the normal lupus drugs and depression/anxiety meds, that's it.

I am considering changing doctors.  I have this silly notion that if you are a doctor who supposedly specializes in auto-immune diseases, then you should know the symptoms they can cause.  And, apparantely, I'm not the only one with the itching thing - yet, when I asked him about it, he looked at me like I had six heads and didn't know what to do with five of them.  

A friend of ours has friends that the wife has had lupus for a long time.  I think my husband and I are going to meet with them.  She used to go to the same rheumatologist as I do, and then switched to the Cleveland Clinic.  I'll be interested in seeing what she has to say.

Luckily, I've always had low blood pressure (my normal used to be 98/68).  It is around 110/70 now.  Except for last Thursday when I went to the urologist it was 140/70.  But, I wonder if the cuff was too small for me.

~Kim