WARNING!! Fast Pred Taper - Adrenal Crisis!!

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MJLD
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Date Joined Jul 2007
Total Posts : 1048
   Posted 3/4/2008 8:46 AM (GMT -7)   
A while back I decided to take myself off of prednisone. I weaned myself down to 10mg and then quit. BAD IDEA! I didn't flare, I had an adrenal crisis. Scarey and deadly! I started vomitting, my pulse stayed high and I was in and out of A Fib, my legs were swelling all the way up past my knees, my blood pressure dropped real low and I was extremely short of breath and exhausted. Thank God I got help in time. Just wanted to let you guys know and admonish you to follow your docs advice on this stuff! Judy

(post edited to change topic title so more members will benefit from this post)

Post Edited By Moderator (AlwaysRosie) : 3/7/2008 7:35:34 AM (GMT-7)


mom46
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Date Joined Dec 2004
Total Posts : 8198
   Posted 3/4/2008 9:18 AM (GMT -7)   

Judy,

   Tks for the reminder. Quitting pred cold turkey is very dangerous. Hopefully, this will help the new members here and some that might be thinking of attempting to quit taking pred without the proper tapering.

                                                               Babs


 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


Crystal Visions
New Member


Date Joined Feb 2008
Total Posts : 17
   Posted 3/4/2008 9:37 PM (GMT -7)   
Oh my that must have been terrifying! I am glad to hear you made it out ok. I haven't started Pred yet but will be soon so I will keep that in my little "to remember"book. Thank you for caring and informing others!
Lupus, Raynaud's, APS (cardiolipin), Protien c+s Deficiancy, COPD emphysema and who knows what else!
 
May The Lord Bless everyone that all have some relief of symptoms


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 3/5/2008 2:06 PM (GMT -7)   
Hi Judy, bless your heart! I know taking steroids is a lousey choice to have to make but somtimes we just don't have a choice. I'm glad you were able to get help in time. Thank goodness. I do know how you feel though. I hate the stuff myself. Hopfully opne of these days they will come up with a better option for all of us.
hugs carol
God Bless
Lupus like symptoms, with pbc symptoms, stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 4x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax 1.0 x3,Singular,nitro spray, aciphex, percocet 10mg.x4. 
I will never leave you nor forsake you!
 
 
 


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 3/6/2008 6:19 AM (GMT -7)   
Judy,

I hope you are feeling better now. *Phewwwwww!* What a scary time!!!

I hope you will edit the title of this topic to include something like "Fast Pred Taper - Adrenal Crisis) so that others who take pred will be more likely to read it. Many members on prednisone have no idea how the adrenals are affected when we taper too fast.

Thanks for posting and . . . . WOW what a scare!

Blessings!

In His Grip

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

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 3/6/2008 12:20 PM (GMT -7)   
Judy,

Thanks for the reminder! What an awful scare you had. I've heard of people dying when they decide to stop cold turkey. You've done a great service by sharing this with us because from time to time people here have talked about going off prednisone. Maybe you've saved a life.

Pat
Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, lunesta, multivitamin, calcium w vit D, fish oil, aspirin


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 3/6/2008 3:11 PM (GMT -7)   
I am glad you are okay. I am also glad that my fast tapers have always gone well. I hate prednisone but at the same time, I know at 20-40mg I would feel great, but the long term effects are not something I need to deal with.

I hope that this doesn't mean you will need pred for life, though I have heard that some people it kills the adrenals.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 3/6/2008 6:32 PM (GMT -7)   
My doc does think the adrenals are shot and i'll have to take at least 7.5 for life. Not good news. I don't know how to edit the title AlwaysRosie! So Sorry. I'm functionally literate; barely when it come to computers! Thanx, Judy

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 3/6/2008 10:00 PM (GMT -7)   
You just hit the pencil in the upper right hand corner of your original post, then change the Subject line. Or any moderator can do it for you.

Lynnwood, Co-Moderator: Lupus Forum

Dx Lupus since '00, new Dr wants to Dx Fibro instead....
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions



AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 3/7/2008 7:37 AM (GMT -7)   
LOL Judy . . . No problem . . . some of those buttons look scary, but if you click on them, you'll see what they might do. If you've chosen the wrong button, you can cancel the action.

Blessings!

In His Grip

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

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 3/7/2008 8:28 AM (GMT -7)   
Oh Judy, that whole experience must have been really scary for you. Thank you so much for posting about it to give us all a reminder about how slowly we need to taper. How are you doing now?
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 3/7/2008 12:32 PM (GMT -7)   
Thanx all for your concern and help! I am much better now. It was a terrifying experience and my own fault! I get frustrated and try to fix things myself only to make them worse!! This "place" has been such a refuge for me. You are a genuine group of people and that means alot. God bless you all! Judy

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1547
   Posted 3/7/2008 2:25 PM (GMT -7)   
Hi Judy.  I want to thank you for telling us about your fast taper experience.  I'm just the type of person who would stop pred too quickly.  I'm soooo glad you're okay!  Love, Butterflake

Dx: SLE ('05), depression, diabetes, fibromyalgia, gerd, sleep apnea (use a CPAP), hypertension, IBS
Tx: CellCept plaquenil methotrexate prednisone prozac celebrex lisinopril actos lipitor nexeum seroquel arthritis tylenol multi vitamin C calcium/D flaxseed oil  PRN: ambien neurontin promethazine xanax
             Better living through chemistry :D    Donna
 


applesk82
Regular Member


Date Joined Oct 2003
Total Posts : 262
   Posted 3/7/2008 11:02 PM (GMT -7)   
i have a question, is it ok to taper your prednisone without the ok of your doctor(s)? I am just wondering, because from the feelings i get from all my docs is that i should never touch the dosage of my medicines without first talking to them and even then they would have to ok it and they would monitor the taper. So I am a little confused when someone posts that they are tapering especially prednisone, since it could be danger for us. could someone please fill in the blanks for me. thanks it would help alot.
Hugs and prayers,                      If it was easy being a lupie, 
   ~Suzanne~                                      the whole world would be one     
                                                             
diagnosed in May '95 with lupus nephritis, hypertension, hypothyroidism, avascular necrosis (knee) '98, kidney transplant April '06, pseudo-cerebral tumor '07, AVN ankles and hips '07
prednisone, cellcept, prograf, lopressor, allopurinol, synthroid, diamox, OsCal +D, lunesta, celexa, percocet for pain


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 3/8/2008 8:45 AM (GMT -7)   
DO NOT taper prednisone (or any medication) without the express approval of your doctors!

This thread is about the very real and very SERIOUS results from trying to taper without medical supervision --

The whole thread is warning AGAINST it.

As the original poster said, she was deathly ill and having heart fibrillation's -- which can KILL

Lynnwood, Co-Moderator: Lupus Forum

Dx Lupus since '00, new Dr wants to Dx Fibro instead....
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions



MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 3/8/2008 4:52 PM (GMT -7)   
Absolutely right Lynnwood! I am a nurse and I knew better. Please, learn from my horrifying experience. Prednisone is an especially dangerous drug. Please do not alter you dose without your docs knowledge and approval!!!! Google acute adrenal crisis! Judy

redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 3/8/2008 8:07 PM (GMT -7)   
Suzanne
I know when I talk about a pred taper it is because my doctor said to try it. My rheumy prefers that I taper according to how I feel when the dose is lowered rather than on a set schedule. When I am wavering between going down or staying a little longer at a dose I often come here for advice. I know some people have rheumys or other docs who dictate exactly how and when a taper will be done, mine will tell me when to try but always says my body decides if it will work and how fast it will happen. I like that because I have read about some people here who the taper makes them feel horrible but their doctor expects them to go down again anyway well before they would do so based on how they feel. I also like that she says if I do poorly then the taper needs to be stopped for a while longer. I prefer not to make myself sicker just because of the goal of getting me off prednisone fast was set, unless it is absolutely necessary like it was back in Jan. I would have taken that taper much slower if it weren't being done for a serious problem. I never change any other medication without a doctor's advice. Heck my rheumy often asks me if my Imuran dose is at the right level- I do best at 150 but we try to keep it at 100. When we tried to d/c it and I got worse she had left it up to me to decide if I needed to go back up again and stay on it. Which I did and notified her about what had happened. I went off Imuran and was on pred instead for the first part of this pregnancy but for me the side effects of prednisone are dangerous after a while- my bp rises steadily- so when I said I needed to go back on Imuran she was fine with it.

You will notice that my rheumy may listen to me on how I do on a specific med or dose but I do not change dosage or med without her guidance even if it is a self regulated taper I still have her on board. NEVER CHANGE YOUR OWN MEDS WITHOUT A DOCTOR TO SUPERVISE!!!!! That is how people end up nearly killing themselves and in worst cases actually killing themselves.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


applesk82
Regular Member


Date Joined Oct 2003
Total Posts : 262
   Posted 3/9/2008 10:58 AM (GMT -7)   
ok i see, i dont see a rheumy because when i choose a nephrologist i always get one that also deals with lupus so that i dont have two see docs, and so far i have been lucky because my nephrologists have always been able to follow both the kidney and the lupus, and for me its kinda pointless to see a rheumy because when my kidney starts to show distress its a sign that the lupus is beginning to act up. but as for the prednisone, all my doctors past and current have always said that i will be on prednisone for the rest of my life, they said that unless i am in a flare i will always be on atleast 5mg and i am ok with that because at that dose it doesnt have any of the negative side effects but its enough along with the other meds to control the lupus.

Judy, i am so sorry i kinda took over your thread with my own questions, i hope there are no hard feelings, its just you brought up such a serious topic and i really had a lot of questions about it. i hope that you are feeling better and i hope that you are doing well emtionally too, i remember from the post about me seeing a therapist that you really are considering doing the same. take care sister and stay well.
Hugs and prayers,                      If it was easy being a lupie, 
   ~Suzanne~                                      the whole world would be one     
                                                             
diagnosed in May '95 with lupus nephritis, hypertension, hypothyroidism, avascular necrosis (knee) '98, kidney transplant April '06, pseudo-cerebral tumor '07, AVN ankles and hips '07
prednisone, cellcept, prograf, lopressor, allopurinol, synthroid, diamox, OsCal +D, lunesta, celexa, percocet for pain


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 3/9/2008 2:26 PM (GMT -7)   
Suzanne, I would recommend a rheumy anyway because there are conditions related to lupus that can become a problem that they are best equiped to handle. You should at least see one so that if/when you need one you already have an established relationship. I know that I likely need to establish a relationship with a nephrologist because 2 of my family members died from lupus related kidney failure- both had been told they were imagining their symptoms until it was way too late.

I know that had I been seeing any other kind of doctor treatment for my RA and sjogrens would have been hard to come by when they finally got to the point we knew what was going on.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 3/9/2008 6:53 PM (GMT -7)   
((((((suzanne)))))))) This isn't "my" thread. It's our place to come and try to make sense of it all. I am really doing good right now. Thanx! My nephrologist also takes care of most of my medical needs. I do not see a rheumatologist on a regular basis. We have consulted them in the past. I love the fact that my neph is comfortable taking care of things and extremely knowledgeable about lupus. I am real comfortable with her. My nephrologist never second guesses me on symptoms I report to her. We have a great relationship. If there's something she feels we need help with, I see the rheumy. (rarely) God Bless you guys, judy

Heidi55529
Regular Member


Date Joined Mar 2006
Total Posts : 147
   Posted 3/9/2008 11:35 PM (GMT -7)   
I'm glad you're okay now! Tapering pred is no joke, and even with the consent of my doctor I was having a lot of issues. I've had to bump myself back up on the pred a few times because I just couldn't handle it. Sometimes I couldn't get a hold of my doctor but I always left messages and when she did get a hold of me. She told me bumping it back up my original dose is fine. But I have never tried to wean myself from it or any medication for that matter.
I was diagnosed with Lupus with Antiphospholipid syndrome in Nov 05.
Current list of medications includes:
Cellcept 250mg/4 capsules twice a day, Prilosec 20mg/1 capsule once a day, Plaquenil 200mg/one tablet twice a day, Metoprolol 25mg/half tablet twice a day, Prednisone 7.5mg/one tablet once a day, Coumadin as directed, Tetracycline 250mg/ two capsules twice a day, Midrin as needed for migraines, Magneseium supplement daily
-Avita cream, Clindamycin lotion, triamcinolone ointment daily to control skin rashes.
-Rituxan infusions twice every six months in March and September


applesk82
Regular Member


Date Joined Oct 2003
Total Posts : 262
   Posted 3/10/2008 3:18 PM (GMT -7)   
i feel the same way Judy, between my nephrologist who also concentrates on lupus, and my PCP who also concentrates on lupus, i'm in very hands. they are both happy to follow my lupus as long as the transplant nephrologists take care of my anti-rejection meds.
Redrose, finding a rheumy and at least maintaining a relationship is hard, because my hubby is military so we move around and to find a new rheumy along with all they others each time we move would be difficult. but when i do talk to my pcp he consults a rheumy.
Hugs and prayers,                      If it was easy being a lupie, 
   ~Suzanne~                                      the whole world would be one     
                                                             
diagnosed in May '95 with lupus nephritis, hypertension, hypothyroidism, avascular necrosis (knee) '98, kidney transplant April '06, pseudo-cerebral tumor '07, AVN ankles and hips '07
prednisone, cellcept, prograf, lopressor, allopurinol, synthroid, diamox, OsCal +D, lunesta, celexa, percocet for pain

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