Anyone know about prednisone withdrawal?

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paladin
New Member


Date Joined Sep 2007
Total Posts : 12
   Posted 9/17/2007 4:40 PM (GMT -7)   
I have some questions about prednisone withdrawal, and hope someone can help me. My 78 year old mother has been on and off prednisone for about 8 years for emphysema. This past year she had a lung abcess on top of her COPD. Doctor had her on 40 mg in hospital and reduced her to 20 mg when he released her last Sunday. He also had her on two antibiotics, which he cold turkeyed on Saturday because she was doing so well. On Monday we found ourselves in the ER. She was unable to get out of bed on Monday morning and her blood pressure was 183/70. My mother NEVER had high blood pressure before. Went to doctor on Tuesday. Put her back on Levaquin, and she improved somewhat. Put her back on prednisone on Friday (40 mg - 4 days, 30 mg - 3 days, 20 mg - 3 days, 10 mg - 3 days) to try to get her back to where she was when she got out of hosptal. Well, it worked. She was great Thursday and Friday - but Saturday and Sunday she was shakey and weak with a "fuzzy head." Also complained of cramps in her legs. She had just finished taking the 30 mg and was starting 20 when this happened. I have been reading other posts about prednisone withdraw, and I think that the blood pressure spike and her shaking, weakness and fuzzy head have been caused by her going off prednisone. I have told her what I have read, and she is thinking of going back on 30 mg for a few days then cutting down to 25 mg, 20mg, etc until she gets to 10. Any comments or ideas would be really appreciated. Thank you.

Post Edited By Moderator (Lynnwood) : 4/6/2008 6:55:02 PM (GMT-6)


sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 9/17/2007 7:57 PM (GMT -7)   
Hi, Paladin and welcome. Does your mother have lupus? It just sounds like she has just gone through quite a bit to be adjusting her meds when unsure if there are other problems still in the background with her age and all. Prednisone is a funny med. It somehow is able to make just about anything feel better. It is for that very reason I would suggest trying to go back to her doc regarding how she's doing now. If you increased it back up to where she feels good and it is really "covering up' another problem, the problem will eventually resurface. (And possibly far worse.) Prednisone withdrawal depends on the person. For me, it mimics a lupus flare...fatigue, fever, chills, chest pain, hair falling out, just to name a few. Hope this helps,
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg


omega
Veteran Member


Date Joined Jan 2007
Total Posts : 607
   Posted 9/18/2007 2:12 AM (GMT -7)   
The best way to withdrawl Pred is to taper it down gradually. Let say if she's on 30mg, then will taper down to 25, 20, 15, 10... It also depends on the person. Some people need to take a maintainence dosage. I cannot taper it down to 10. Some people can taper it from 20 to 10mg @ a time, and some cannot. It really depends.

paladin
New Member


Date Joined Sep 2007
Total Posts : 12
   Posted 9/18/2007 7:23 AM (GMT -7)   
My mom does not have lupus. She has emphysema and over the last year a lung abcess with antibiotic resistent bacteria. Otherwise - she is healthy - and they have tested her for everything. She upped her prednisone to 30 mg and is feeling somewhat better. Is going to keep it there for a couple days and then decrease slowly 5 mgs each time. Hopefully, this will get her back to 5 mg maintenance dosage without so much discomfort. Thank you for your help.l

omega
Veteran Member


Date Joined Jan 2007
Total Posts : 607
   Posted 9/18/2007 8:01 AM (GMT -7)   
It depends on yr doctor. Mine is for 5 days, then four days, then 3 days, and so on.

CaptSue
Regular Member


Date Joined Jan 2007
Total Posts : 279
   Posted 9/19/2007 4:16 AM (GMT -7)   
Hi Paladin,

Sorry to hear your Mom is having such problems. My advice on tapering on the predisone is to listen to what you doctor says but also, she should listen to her body. I went from 10mg to 5mg over about a three month period. I went from 10 to 7.5 by taking 7.5 on days my body seemed to be ok (my barometer is how swollen my fingers are -- I bet you Mom has some indicators on how the day will go). In the beginning I could only take a 7.5 once every three or four days but then got it to every other day, etc.

I had a nurse practicioner say I could go from 5mg a day to 2.5 a day for two weeks and then 2.5 every other day which was totally unrealistic. I still can't go below 5 though I might get some 1mg tablets and try to go down really slowly.

Anyway, everybody is so different. Hope your Mom finds something that works for her.

Take Care,
Sue
Diagnosis: Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena (both diagnosed in 2006)

Meds: prednisone (5.0 mg), Imuran (2X50mg), Prilosec (20mg), WellbutrinXL (150mg)


paladin
New Member


Date Joined Sep 2007
Total Posts : 12
   Posted 9/19/2007 6:05 AM (GMT -7)   
Thank you. She is much better - at least she was last night - having popped back to 30 mgs for a few days. Going to go to 25 mgs today and continue to taper off much slower at 5 mgs each drop. Thank you and everyone who has responded and helped me with this. What would we do without the internet!

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1298
   Posted 9/19/2007 3:09 PM (GMT -7)   
Prednisone is a love/hate drug.  It has saved many lives and helped many people with auto immunes and other diseases but it can have many side effects, some of them very bad, for long term users.  Short term use does not usually have the same problems.
 
I have been on pred for over 2 years and started at 60mg daily.  Now down to 6 mg and hope to taper completely off in another 6 months or so.  Tapering is a very, very slow process for long term use and is very gradual.  For someone who only takes it a few days the taper is within a matter of days.
 
Our bodies produce 7-10mg of cortisone (prednisone is the artificial version) and when you get large doses of pred the adrenal glands which produce cortisone stop producing it.  For long term users there can be severe withdrawal symptoms and some users cannot wean off prednisone and have to take a maintenance dose.  Those patients adrenals have atrophied and are not able to produce cortisone, or not enough.
 
Hypertension is one of the harmful side effects but usually does not happen for a long time.  It hit me after about 9-10 months.
 
Prednisone is a powerful steroid and affects the body systemically and different people react in different ways to it and to withdrawing from it.  Since she has been on and off it for 8 years there could be problems for her body to adjust.  Or it could be interactions with other meds and/or their withdrawal at the same time.  Hard to say. 
 
Problems with the adrenal glands usually start at much lower doses....20mg but usually at 10 mg.  Small changes can make a big difference.  Many doctors will only reduce 1mg every month or 2 to allow your body to readjust and avoid problems.  However, some cannot get off it entirely. 
 
Complicated issue that requires lots of questions for your doctor.  Keep detailed notes on what and when meds are taken, reduced, and what symptoms are present.
 
Bill
 
 
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone (6mg & tapering), 75mg imuran, lisinopril 40mg, maxide 37.5/25mg, norvasc 5 mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4392
   Posted 9/19/2007 4:20 PM (GMT -7)   
The likely culprit is the infection. Steroids suppress the body's inflammatory response to the bacteria. When the taper is quick, the body re-asserts itself against the bacteria and the die-off and toxins from the bacteria can become very bad. I'd recommend taking her to a Naturopathic Physician for that antibiotic-resistant infection. There are treatments that will work. Also you might want to look up "Clove Oil" on PubMed - it is a powerful antioxidant and antibacterial essential oil. Make sure you get 100% pure clove oil, not an alcohol-diluted version.

Take care,
-Razzle
Gluten & Sulfite Sensitivity, Multiple Food & Inhalant Allergies, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD (Lupus?), Osteoporosis, Anemia, malabsorption/malnutrition, etc.
Meds:  Pulmicort, Claritin, Injectable Vitamin B12, Herbs, Nutritional Supplements, Essential Oils, Homeopathy.


paladin
New Member


Date Joined Sep 2007
Total Posts : 12
   Posted 9/20/2007 8:30 AM (GMT -7)   
Thank you for your response. My mom is doing much better. Went back up to 30 mg for a few days, and is now on 25 mg. Intends to cut back to 20 mg, then 15 mg etc slowly until she gets to her 5 mg maintenance dose. Hope this works - it is so far.

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/21/2007 7:28 PM (GMT -7)   
So glad your mom is feeling better paladin. The lower her dose is, the slower the taper should become.

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


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/22/2007 8:14 PM (GMT -7)   
Saturday's words (sorry these are SO late)

5. The Nose Job

37. The Maestro

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


Pidgelsmom
New Member


Date Joined Apr 2008
Total Posts : 1
   Posted 4/6/2008 2:12 PM (GMT -7)   
New here, but going through Prednisone withdrawl, myself. I was on it originally for a skin itching problem and ended up on 40 mg/day for over 8 months. I ended up with moon face, large hips, hump on my back etc. I finally went to another doc and to an endocrinologist for a taper schedule. I was taken down to 30 mg at once, then by 5mgs per month  to 10mg and  then down 1mg/MONTH until I was at 1 mg/day for 30 days. I had been off of it for 5 months, with periodic facial swelling and itching. I thought it was something else causing an alergic reaction, but 2 weeks ago I was put on Prednisone again for an asthma attack (40 mg with a 3 day taper). I extended the taper to a 10 mg the 7th day and stopped. By day 2 off of it my face was swollen and red, the skin on my back was bubbly, I am tired, irritable, spooky ( I startle easy) shaky, my back hurts, my joints hurt and I sleep a lot. I have lost 2 days of work. I know that my adrenals have been permanently harmed by this awful stuff, but I will not go back on it. if I had swelling and such on 1mg/day... I just have to ride it out. It scares me but i know that in a month or so. I'll be better.
It is important that a person consult ( at least) an endocrinologist when in a taper, they are the expert with regard to the adrenal glands, and how they can be affected by prednisone. DO NOT LET YOUR DOCTOR BLOW YOU OFF.
Blessings to all who are affected.
Pidgelsmom

Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 3/13/2012 7:28 PM (GMT -7)   
I am also trying to taper prednisone for the 3rd time in over a year. I started it back in February 2011 due to Pneumonia and pleurisy from lupus. I was on 20mgs and tapered down to about 11mg or so and then got another episode of pleurisy and had to go back up and come back down. The 2nd time I tried to taper I had withdrawals and I was on the couch for days. I was on 7.5mg and now I'm down to 4.5 which I started today but the past few days I've been having weakness/fatigue,etc. My rheumy is going to order a cortisol test and she is referring me to an Endocrinologist for the first time. We are also talking about Methotrexate. I do not want to be on prednisone for the rest of my life and I am severely photosensitive plus allergic to the chemicals in sunscreen and allergic to soy/barley and weeds/grasses/walnut trees/pollen/pet dander/feathers,etc so I am going to def need something when summer comes. I can't stay inside all the time as I have 2 young children and it's too depressng for me. I'm glad I came across this post....I hope you are all feeling better. My withdrawal symptoms are like flares for me too by the way....UGH.
 
-Brittanee
 
P.S. I have never had the weird stuff with prednisone that most get such as the weight gain. In fact I have lost weight. I weigh the lowest I ever have in my life(97lbs). I'm waiting on lab results to see if I suffer from Celiacs or not..I've tried everything and being allergic to soy and barley I'm thinking might have something to do with it because soy is the replacement for foods wth barley/wheat/gluten and vice versa. I've never had my face puff up or anything swell but I have had anxiety...like knots in my stomach and mood swings. Other than that not much besides the tapering issue. I've had cold sweats...and this time and last time with tapering I also had infections a week or so before I think...now I wonder if they were infections or a result of the adrenal insufficiency??
*Lupie Britt*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:Plaquenil-200mg 2x/day, Prednisone-1mgs taper 1mg every 4 wks, Keppra-750mg 2x/day, Daily Vitamin- 1 pill/day, Folic Acid- 1mg 1x/day, Protonix 40mg 1x/day,Vit. D 800IU's 1x/day, Lyrica 50mgs 1x/day, Flonase 50mcg 2 sprays each 1x/day.

*Lord_Walters_Lady*

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 3/13/2012 8:59 PM (GMT -7)   
You've posted on a thread from 2008, so most of the folks who posted here may have moved on.

The deal is that part, if not all, of our fatgiue is from adrenal insufficiency. Prednisone replaces the 5-8 mg of cortisol that the adrenals produce when performing normally. Sometimes when we try to come off of prednisone it simply isn't possible due to the failure of the adrenal glands, and it's perfectly normal to stay on 5-8 mg of prednisone to replace what our bodies would normally produce if we were entirely disease-free.

This is somewhat separate from the inflammation we get when our super-active immune systems attack our bodies randomly (thanks lupus!) -- in that case we need the extra prednisone to control the excess inflammation.

Hope you feel better soon,
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 3/14/2012 9:32 AM (GMT -7)   
Thanks Lynnwood....It seems like anything above 5 and i'm okay...10 is great lol....I emailed my rheumy last night and she told me she is sending me to an Endocrinologist for the trouble with prednisone. yet another specialist...ehh....i'd rather just stay on the 5mgs and add the metho and be done with it really....I'm pretty sure this is withdrawal...so i guess my adrenal glands do suck! lol....hope you are feeling okay.
*Lupie Britt*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:Plaquenil-200mg 2x/day, Prednisone-1mgs taper 1mg every 4 wks, Keppra-750mg 2x/day, Daily Vitamin- 1 pill/day, Folic Acid- 1mg 1x/day, Protonix 40mg 1x/day,Vit. D 800IU's 1x/day, Lyrica 50mgs 1x/day, Flonase 50mcg 2 sprays each 1x/day.

*Lord_Walters_Lady*
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