Pred / Adrenal Glands

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Dakota0917
Regular Member


Date Joined Oct 2007
Total Posts : 100
   Posted 1/25/2008 9:07 AM (GMT -7)   
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
SLE: 07/07, Irritable Bowel Syndrome, migraines
400 mg. plaquenil, 25 mg. prednisone, 2400 mg. ibuprofin, 15 mg. methotrexate, folic acid, asacol, caltrate-D, wellbutrin, paxil


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 1/25/2008 11:40 AM (GMT -7)   
Hi Kim!! The pred experts will be along soon to give you some great advice. But from what I've read, as you taper, you will KNOW if you've dropped to low, too fast because your body will hurt. So, YOU will be the expert about YOUR taper.

This is a great topic . . . thanks for posting. I hope your taper goes well. Some of the members get to a point in the taper where they will do the taper e/o/d so it isn't too fast . . . . like going from 8 mg to 6 mg, might be a week of 8mg Monday, 6 mg Tuesday, 8 Mg. Wed., 6 mg. Thurs, etc. and then then next week go to 6mg/day. Its one more way to sneak it down.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

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redrose77
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Date Joined Sep 2005
Total Posts : 2573
   Posted 1/25/2008 12:53 PM (GMT -7)   
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.
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone, Imuran, Procardia


Dakota0917
Regular Member


Date Joined Oct 2007
Total Posts : 100
   Posted 1/25/2008 1:15 PM (GMT -7)   
Thanks for the responses so far...

I've been as high as 30 mg/day. I tried doing a 5 mg drop and I was miserable. Had the excruitiating headache, fatigue, joint pain. So - went back up 2.5 mg / day and waited two weeks to drop. To - that's what seemed to work for me...dropping 2 mg every couple weeks. The last three weeks, I was trying to drop 2 mg every week. I read somewhere (I would have to look up where I read it) that when you hit 10 mg, you should only drop 1 mg at a time until you are off of it.

I'm just kind of worried that my adrenal glands aren't going to start working again...

~Kim
SLE: 07/07, Irritable Bowel Syndrome, migraines
400 mg. plaquenil, 25 mg. prednisone, 2400 mg. ibuprofin, 15 mg. methotrexate, folic acid, asacol, caltrate-D, wellbutrin, paxil


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/25/2008 4:33 PM (GMT -7)   
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 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 1/25/2008 5:18 PM (GMT -7)   
ginny, I know I have to taper faster this time but have to wonder why I was tapered so fast in the past. Do doctors just see what kind of taper you tolerate and then use it? My rheumy always says if I feel bad or like the taper is too fast go back up and extra week then see how it goes next time.
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone, Imuran, Procardia


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/25/2008 5:53 PM (GMT -7)   
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 
 
 
 
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Dakota0917
Regular Member


Date Joined Oct 2007
Total Posts : 100
   Posted 1/25/2008 8:29 PM (GMT -7)   
Ginny:
 
First of all, thank you so much for being willing to share your experiences and knowledge.  After the bad experience I had with the 5 mg drop, I really don't trust the doctor to tell me how much to drop.
 
I am wondering, however, if the last three weeks I've been dropping too fast (2 mg / week).  I'm prone to migraines.  And, I also know that you can have such thing as a "lupus headache" that mimics a migraine and will only respond to high doses of prednisone (that's why I was up to 30 mg earlier).  In addition, I know that dropping prednisone can cause the bad headaches too.
 
Today I dropped to 10 mg and tonight I have the start of another migraine.
 
I really, really, REALLY want off this stuff.  And, to be completely honest - it is because I have put on so much weight that I can't stand it.  I've always struggled with my weight...so this is really driving me crazy.
 
However, it sounds like I need to get a grip on reality and come to terms with the fact that I may never get off of it.  And, at the very least, need to get a grip on the fact that it isn't going to go as fast as I have led myself to believe I could do.
 
I agree that the rheumys don't really seem to give a care about how you are reacting to the taper - they just want you off.  And, I understand all the negative side effects.  But, man...  I think adrenal crisis is a little more critical than osteoporosis.  Afterall, osteo won't kill you.  My rheumy was like "when I see you in three months, you really need to be off of prednisone...and if not, I can up your methotrexate".  And, he never talked to me about the adrenal glands!  Everything I know, is because I've researched it to death or read it here!  He wasn't even aware of anything called a "lupus headache".  He also told me that the crazy itching spells I get aren't related to the lupus.  Yet, I posted here about it and had several people respond about having the same issue.
 
Anyway, enough of that soapbox.
 
Thanks again...
~Kim
SLE: 07/07, Irritable Bowel Syndrome, migraines
400 mg. plaquenil, 25 mg. prednisone, 2400 mg. ibuprofin, 15 mg. methotrexate, folic acid, asacol, caltrate-D, wellbutrin, paxil


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 1/25/2008 8:57 PM (GMT -7)   
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
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 1/25/2008 9:43 PM (GMT -7)   

Barb (((((hugs))))),

Thank you for what you said.  I think we all could use that encouragement.  Kim, I've put on 60 pounds.  I was 110 when I was diagnosed.  I'm slowly, very slowly, losing some of that weight now.  But it's soooo hard, as you know.  I look like a different person, but I'm still the same old Ginny!  It has been hard getting used to the extra chub that's all over my body, and the stretch marks.  But I'm alive!  If it wasn't for the prednisone, I don't think I'd be here, to be completely honest.  Prednisone saved my life.

I had a really hard time getting used to my new "look".  I still have a complex, LOL.  But oh well.  The alternative is that I'm dead, so I'll live with the extra poundage. yeah

I agree with you.  Adrenal crisis is WAY more serious than osteo.  Heck, with all the bone metabolizing meds out there, you might be like every other woman, and not get it until you're old and wrinkley!  I take Didrocal, 2000mg of calcium, 1400mg of vitamin D, every day.  I get a bone density test every year, and I have the bones of a normal 34 year old woman!  And I've been on chronic steroids for almost 8 years!  Are you on a bone metabolizer like Didrocal, Fosomax?  Any other one?  You should be, and if you're not, I'm going to come to where your doctor is and give him a major spanking!!!  I'm serious!  WHAPPA!!!

That's an awful lot of pressure to put on you to be off the pred in 3 months.  I would seriously consider seeing a new rheumy.  If you NEED to be on prednisone, then so be it.  He needs to stop the pressure and just see where you're at in 3 months and go from there.  Sure, upping your methotrexate is great, but some people need multiple medications.  Prednisone is a good one, a really good one.  Despite the negative side effects.

I'm surprised he hasn't talked to you about adrenal fatigue.  You need to be 100% informed about your condition, the side effects, and the risks.  This just isn't right.  I'm sure it's not sitting well with you either......

Oh, and yes.  That itching you get is from the lupus, or it can be fibro.  Both conditions will cause that!  I get it all the time, and notice it most when my fibro is flaring up.  It's all so weird.....

Take care tonight Kim, we'll talk more!

Ginny


I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 1/26/2008 10:02 AM (GMT -7)   
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.

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 1/26/2008 1:13 PM (GMT -7)   
Dakota, believe me a lot of us understand the weight gain. I have put on a whole extra person and a little extra since I first became ill. A lot of my problem is water retention, but still it is depressing to see pictures of me now compared to then. I used to be a tiny little thing. My rheumy always says to do the drop and if I feel bad go right back up because it is possible my body isn't ready for the next drop yet. So if you feel bad then go back up to your last dose before the drop. Wait an extra week and then try again. You need to listen to your body. I think the reason all my drops have been done so fast is because 1. I tolerated the drop and didn't need to go back up and 2. every time I have come off prednisone I have needed to get off ASAP because of the blood pressure problems it causes me. Kind of scary when you consider it.
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone, Imuran, Procardia


Dakota0917
Regular Member


Date Joined Oct 2007
Total Posts : 100
   Posted 1/26/2008 6:05 PM (GMT -7)   
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
 
 
 
 
 
SLE: 07/07, Irritable Bowel Syndrome, migraines
400 mg. plaquenil, 25 mg. prednisone, 2400 mg. ibuprofin, 15 mg. methotrexate, folic acid, asacol, caltrate-D, wellbutrin, paxil

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