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what dose of prednisone are you on?

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Posted 11/14/2008 8:41 PM (GMT 0)
hi

what dose of prednisone did you start on and what are you on now?

does anyone worry about taking too high of a dose?

i remember what happened to Jerry lewis when he was on prednisone...he swelled up pretty bad...what dose was he on?

are there lab tests that can measure if you are on too high of a dose? cortisol?
Posted 11/14/2008 9:41 PM (GMT 0)
I am now on 2.5mg plus 50mg of imuran but was on 60mg of prednisone and 150mg of imuran 3 years ago.  Some people have a terrible time with prednisone but the worst side effect I had was hypertension which has been controlled by other meds.  On low doses most of the bad side effects are not a problem.

Google prednisone side effects and you will find a host of minor to very serious, life threatening ones.  Keep in mind that most do not get the really bad ones but you never know who will.  It is a miracle drug and has saved many lives but also caused serious side effects and conditions.  Some people gain weight but I believe that many people continue to eat the same amount of calories and the wrong kind as well even though they might be disabled or much less active.  Of course you will gain weight.  I gained nothing by watching what and how much I ate.  Stay away from simple carbs.....

I had the moon face and prednisone belly which is a redisposition of fat.  As you taper to lower doses this goes away and is no big deal.  Don't know what dose Lewis was on but from the looks he was probably up to 60mg or more at some point.  60 is generally the highest dose but I have heard of some extreme cases where patients have been on twice that for a short time.

Cortisol is the same thing that your adrenal glands produce naturally in the amount of 7-10mg daily.  When you take a high dose of prednisone your adrenals shut down.  As you taper they will kick in again although some patients have problems due to adrenal gland insufficiency (atrophy) and must take a low maintenance dose forever.  This dose will be 15mg or lower.

Taking prednisone is always a risk/benefit situation and you should talk to your doctor about how much, how long, and what the taper rate would be.  I had a case of prednisone resistant polymyositis and wound up a quadriplegic for a while but it did help control my lupus and scleroderma.  It took IVIG and imuran to control my myositis and since my case was so extreme my taper has been very, very slow but it has worked.  I do not have any really bad conditions from taking prednisone for over 3 years except hypertension which is under control.

Bill

Posted 11/15/2008 7:39 AM (GMT 0)
how come such a large dose is needed in the beggining?

is it common to start with a large dose and then taper down?
Posted 11/15/2008 8:27 AM (GMT 0)
Hi alex-
It is normal to start a high dose. The high dose kind of shocks the immune system. If they use a low dose it wont have an effect your body will just stop producing cortisol. After the high dose they then have to taper the dose down so it doesnt shock your body into not producing its own cortisol. So if they taper it down the body will gradually start producing the right amount of cortisol every day. I am not quite sure the purpose of long term prednisone, it has never made sense to me. It seems to me that your body would just stop making cortisol altogether after long term use. But people with Lupus, RA, asthma, COPD, etc. benefit greatly from long term use. If you are only going to be taking the prednisone for a few weeks then I wouldnt worry too much. If you are taking it long term watch for the "moon face" and make sure you are getting enough vit d and calcium and probably on a osteoporosis med because pred breaks down your bone stregth if you are on it for years. See how it makes you feel before you worry about it! I was 20 mg/day for 2 weeks and didnt feel that it made enough of a difference to stay on it considering the long term effects. Hope that helps.
melissa
Posted 11/15/2008 12:58 PM (GMT 0)
Hi alex,

I started at 60mg and tapered down to 5mg. I have been at 5 for a couple of years after going one year not being on it at all. I swelled up like Jerry Lewis did as well, but it was a combination of the prednisone and my kidneys being sick, which I believe was his problem as well.
Posted 11/15/2008 5:09 PM (GMT 0)
It really depends on how much disease activity you have, as well as what other medications you are on and how aggressive your doctor is. I started at 10mg, went up to 15mg with Cellcept, and am now slowly going down 1mg per month -- 8mg right now. Finding a good rheumy that you can discuss things with and work together to find the right amount for your circumstances is imperative in my opinion. Cheers, PS. Prednisone does produce an actual chemical change in your body that changes the way you process carbohydrates, as well as drastically increasing urges for junk carbs. Some puffiness and weight gain may be unavoidable, but being strict about eating healthy protein & good vegetable carbs rather than bread,pasta,cake & sugar will help keep things in check.
Posted 11/15/2008 5:22 PM (GMT 0)
Prednisone is used as little as possible these days because of the risk of serious side effects. Taking any medicine is a risk benefit calculation. One of the problems associated with Prednisone arises when reducing the dose after more than a few weeks at moderate doses. The adrenal gland has to be given time to start producing natural cortisol again as it has been suppressed by the Prednisone. If levels get too low there's a risk of life threatening adrenal crisis.
This is a strange question or have you been diagnosed with an autoimmune connective tissue disease like SLE that's treated with Prednisone ?


HTH
BB
Posted 11/15/2008 8:30 PM (GMT 0)

Hi,

When I took prednisone for a bad flare, I was started on 40mg per day and slowly tapered down.

Posted 11/15/2008 8:57 PM (GMT 0)
The highest dose I've taken was after an ER visit for chest pain which turned out to be costochonditis. The gave me an injection of 150mg prednisolene with 80mg for two days, 60 for two days , 40 for two days and then 20 for two days. It cleared up the chest pain very quickly, but caused such irratability that I wanted to crawl under a rock for about two weeks after. I would have eaten my way through four dress sizes if it wasn't for the fact that I had a stomach virus at the same time. I still got moonface and pred belly. Sill have a bit of both after a month. I hope I never have to take such a high dose again. So far, I have no signs of major organ involvement, for me it's been skin, joints and fatigue.
Posted 12/9/2010 1:52 AM (GMT 0)
This last run I had with Prednisone for pneumonia was awful. They had me on 80mg for a week, then 60mg for 2 days, 40mg for 2 days, 20mg for 2 days then 10mg for 2 more days. I had such a horrible temper, forget about sleeping when they kept giving me the 80mg in my IV and the whole time i was on it my stomach was on fire. Then when I started to taper down I thought I was going to die. The whole time I am on the stuff I feel horrible and when they begin to take me off my joints HURT so bad I can't walk or do anything for that matter cause then the doctors have to give pain medicine every 4hrs just so I can barely walk around the hospital.
They say it's a wonderful drug but I don't see it. Does this happen to every person? OH and my doctor says it's not cause from the prednisone, that he has never heard of that side effect. Am I weird or does this happen to other people? Heather
Posted 12/9/2010 3:10 AM (GMT 0)
Hi Heather,

Welcome to the forum, hon!

This is a very old thread....of course it's perfectly OK to post to it, but you might want to start a new topic to introduce yourself and post your questions.

I'm not a doctor of course, and I can't diagnose anything, but I'd like to try to give you my perspective on your situation.

I do know that it's unusual for someone with ONLY autoimmune issues to have the kind of reaction to prednisone that you describe. Prednisone normally acts as an anti-inflammatory IF the disease process is caused by your immune system attacking itself (i.e., autoimmune).

But if you have other problems that are NOT autoimmune in nature, then your reaction does make sense.

I myself have a whole bunch of autoimmune diseases, but I also have Lyme disease, Babesiosis, Ehrlichiosis, and Bartonella, which are tick-borne diseases that are becoming epidemic in the United States, Canada, Europe and Asia.

I was started on prednisone 2 1/2 years ago for my autoimmune hepatitis; they put me on 40 mg a day for the first 6 months, with the occasional bump-up to 60 mg when my asthma flared a couple of times, then I've very very slowly tapered down to 5 mg over 2 years. At the time I was first put on prednisone, I did not know I had Lyme disease.

The problem is that prednisone is GOOD for my autoimmune diseases like lupus and AIH, but very very BAD for the Lyme disease and other bacterial illnesses. Prednisone suppresses my immune system so it can't fight the Lyme effectively, therefore I tend to experience a flare-up of Lyme disease symptoms while on high doses of prednisone.

Lyme can cause many different symptoms in different people, but joint pain is one of the really common ones.....most people with Lyme have some degree of joint pain. Here's a "short list" of symptoms for Lyme and a few other tick-borne diseases (TBD):

www.anapsid.org/lyme/symptoms/tbi-symptoms.html

Lyme is often mistaken for lupus or MS; it can trigger autoimmune diseases as well as mimic them.

Have you ever been tested for Lyme disease? Even if you have you should be aware that the current blood tests for Lyme are very inaccurate and miss at least 50% of people who actually do have Lyme disease.

The best way to get tested is to find a Lyme-Literate doctor (aka LLMD in the Lyme community). The Lyme forum here on Healing Well can help you if you decide to pursue this. An LLMD can test for Lyme by running your bloodwork through one of the better Lyme labs in the country, such as IGeneX here on the West Coast. Their methods are much better than most, very state-of-the-art.

I am concerned because your reaction is not the usual one and this needs to be investigated by a doctor.

Take care....you're in my thoughts and prayers!

Please feel free to continue to ask questions; email me if you wish!
JoAnn
Posted 12/27/2010 10:34 PM (GMT 0)

hi everyone,

i started with 60mg of prednisone now im on 12.5mg and then on feb im going to be on 10mg then after 5mg my doctor said shes going to have me on 5mg for awhile, everyone said that my swelling of my face has gone down  but i dont see it. with 5mg do you still have a moon face? or does your face go back down once your off the medication completly?

Posted 12/28/2010 1:18 AM (GMT 0)
One disease that is difficult to separate from lupus is Fibromyalgia. Actually, one of the ways they decide which of those you have is to treat with prednisone -- a BAD reaction, its fibro, a GOOD reaction, it's lupus.
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