Prescriptions 101: Prednisone

Ah. Where to start with a drug like Prednisone. There were months when I referred to my steroid dosages as my little magic pills - little because they are the smallest pills I think I've every taken (especially when you have to cut those 5mg pills in half - I was forever losing those little slivers!), and magic because within 30 minutes of taking my dose, the swelling in my joints and the ache throughout my body would temporarily subside. On days when my moon face was in full force, my skin was broken out, or my hands wouldn't stop shaking because of my high doses, I wasn't as big of a fan, but I still know that I couldn't have made it year after year without those magic little pills.

Prednisone seems to be one of the most common drugs prescribed for Lupus - and a lot of people find major success with that drug alone. However, there are tons of side effects, all of which I'll list below, and I've never personally met anyone who has been side-effect free. It's just one of those things that you learn to work around when it comes to this drug - though most doctors are quick to utilize steroid-sparing drugs (like plaquenil or non-steroid anti-inflammatories) because the effects of prednisone are so pervasive. Although I wasn't so lucky in the bone density department due to the high doses of prednisone (60mg +) I had to take in the beginning and at various points in my bout with Lupus, I never suffered from weight gain, ulcers, or blood sugar issues, which can be huge deterrents for people who are on and off prednisone frequently.

For the first 6 years, I was always on some level of prednisone (I finally went off of it for good a little more than a year ago.) I've been on as little as 5 mg every other day and up to 80 mg every single day. There was a long stretch when I couldn't get any lower than 10mg a day, though...anytime I tried anything less, I felt miserable. It was as if I wasn't taking any medication at all. This is one of those drugs that takes a lot of trial and error, and you may find that during one flare - 20mg a day is enough to get you back on track - while during another flare, it may take 50mg to get things under control. That's why it's imperative that you work closely with your doctor to manage the dosage of medication, the side-effects, and the effectiveness of the drug on your disease activity. It takes a close eye to keep all of these things in check!

Here's the skinny on Prednisone:
Dosage: Various. I've had 5mg tablets and cut them in half (for 2.5mg dosages), and I've had 20mg tablets and taken 3 0r 4 of them at a time. It just depends on the activity of your disease. My doctor is a big proponent of pulse therapy - if I'm on a 20mg dose every day, after a period of a few weeks or months (or however long it takes before my body shows signs of stability), my doctor will taper the drug as follows: 20mg one day/15mg the next. I'll do that for 2 weeks (or whatever time frame he specifies), and then I'll go down to 20/10, 20/5, and then finally 20/0mg.

At each interval decrease, there's usually an adjustment period where your body has to become accustomed to the lower dose of prednisone. In fact, you may experience increased joint pain, swelling, or your other typical Lupus symptoms as you decrease your dosage (typically known as withdrawal). My doctor's rule of thumb was this: if after the second or third day of tapering, you're continuing to feel worse, your body may not be ready for the lower dosage. If you're tapering down, feel free to ask your doctor when and/or how you can determine if you've gone too low. The last thing you want to do is continue tapering if you're not ready for it! You have to be the one to alert your doctor though - as you may not have an appointment schedule until after it's too late.

Known side-effects: I'll put an asterisk by those symptoms that I've experienced. These are all very common, but should you experience any one of the symptoms listed below, it should be communicated to your doctor. Here's a great link to a more in-depth look at the known side-effects.

*1)Swelling of the face, often referred to as "moon face" or "chipmunk cheeks"; some patients feel ugly and say that they do not recognize themselves in the mirror. Remember, these changes are reversible. 2)A hump on the upper part of the back; this hump is made of fat, not bone.
3)Bloating or swelling of the abdomen.
4)Weight gain; prednisone may cause a great increase in appetite. Weight gain can be controlled by a low calorie diet, by exercise and by avoidance of salt. Avoid salty foods and do not add any salt.
*5)Stomach problems - ex. Ulcers and/or Heartburn; to ease the burning, try taking prednisone with food. This problem may require anti-ulcer medication.
*6)Mood changes; sometimes the change is for the better. However, depression may be made worse by prednisone.
*7)Insomnia; patients may have difficulty sleeping at nights.
*8)Shakiness; patients may have feelings of being "hyper: or that "things are running fast inside my head".
*9)Weakness of the thigh muscles; patients may have difficulty in climbing stairs, getting out of the bath or getting up from a chair or toilet seat.
*10)Interruption of the menstrual cycle; periods may stop altogether.
*11)Increased risk of infections; patients may have more infections including some caused by germs that the body is normally resistant to.
*12)Acne; don't hesitate to seek help from a dermatologist on this one. Many prescription topical drugs can eliminate the breakouts completely.

Long term side-effects
*12)Easy bruising of the skin; bruising from prednisone use often happens without any obvious injury and may require that blood clotting ability be checked by the physician. 13)Stretch marks; these may occur on the upper body, the arms, the abdomen and the thighs. 14)Excessive growth of body hair; this hair growth usually appears on the face and will stop when prednisone is decreased. 15)Cataracts; these are a cloudiness of the lens of the eyes that cause a decrease in vision. Occasionally, surgery may be required. 16) Osteonecrosis; this condition means "dead bone" and most frequently affects a bone in the hip joint called the femur (other bones may be involved as well). Osteonecrosis is becoming a more important cause of pain and disability in lupus patients. If this problem is found early, worsening of the process may be prevented by performing a surgical procedure. In many patients, the damage caused by osteonecrosis eventually comes to a stop. In some patients, where damage to the bone has been severe, an artificial joint may be needed.
*17)Osteoporosis; this results from a loss of calcium from the bones and often leads to fractures, particularly in the spine. These may be a major cause of pain and disability. However, this process is at least partly reversible if prednisone can be stopped. If prednisone must be continued, this side effect may be decreased by exercise, by eating foods rich in calcium and by taking extra calcium and vitamin D as prescribed by your physician. These preventive measures should be started as soon as a high prednisone dose is begun.
*18)Heart attacks; several factors (including smoking, high blood pressure and high blood sugar) combined with long term prednisone treatment may lead to a narrowing of the blood vessels of the heart and early heart attacks. This risk can be decreased by maintaining a reasonable weight, controlling blood pressure and, most importantly, not smoking.

Administering: I always took prednisone with a small snack, preferably something of substance. (Taking 30mg of prednisone in the morning along with a donut is NOT a good idea!)

Cost: Very inexpensive. When I have a prescription filled, my pharmacy sometimes opts not to run it through my insurance - because a cost to me (sans insurance) for a month's supply can be as little as $3!

Limitations: Other than trying not to be too clumsy while on prednisone (because you'll bruise so easily!), my doctor found it necessary to prescribe a medicine like Fosamax or Actonel to help with the osteoporosis brought by prednisone. These drugs slow bone loss while increasing bone mass, and have limitations of their own: they must be taken 30 minutes before you eat or drink anything (other than the water you take with the pill); must be taken with 6-8oz of water; you cannot lie down for 30 minutes after taking your required dosage; and you cannot be pregnant or plan on becoming pregnant on either of these drugs. In fact, my doctor was most comfortable stopping these drugs at least 6 months before I planned on even thinking about pregnancy. Guess one is never sure how long these types of things stay in the body.

In order to monitor my bone density, I had a DEXA bone scan every year or two, and unfortunately with each scan, an increase in bone loss was revealed. However, after spending the last 1 1/2 off of prednisone completely, and having been on low dosages for the year or two prior (because of the effectiveness of drugs like plaquenil and cellcept that seemed to work quite well for me), my bone density has actually improved! It's not what it once was - but I'm thrilled to say that it's at least stabilized.

That's it for Prednisone - Next Up: Plaquenil


Simply Married said…
This comment has been removed by the author.
Anonymous said…
Ok so the trade off is i lose some of the severe pain in my muscles and joints. I feel emotionally miserable and want to literally behead people while i am on this steroid for the smallest infraction. Then there is the absolute weight gain that is totally uncontrollable. 12 pounds in two weeks. And the dr says 'oh whats 12 pounds!' Are you insane i felt like saying! Then there is looking hideous. Add on top of that i dont want to then exercise so i lose even more muscle mass starting a ridiclous cycle of weight gain and loss of movement making it even more difficult to accomplish anything.

Yet when i suggest i will never take this steriod again and i find it way more danergous to my health than the percocet that is all i have left as a pain reliever (i am violently allergic to all NSAIs now after taking them for 16 years straight) my doctor suggests i am looking to just take more percocet. Yet with pain relief i can still excersize and continue to try to live my life. Not the way i want to continue but at least i am not a fat ugly blob sitting in bed whining. Yes i am still in significant pain because if i take enough of this horrid pain killer to actually remove the pain i cant function anyhow. Still one i can take and keep moving the other is a trap that seems one cannot get out of. So why is it that for me as a lupus patient i am told to go with something so dangerous and such huge threat to my overall health. Yes i am aware that the percocet will addict my body. There is no way it will ever get my mind and i can control my weight with it. I can still excersize and work.

Background I was on Predisone for 2.5 years. Gained 130 pounds. Hated myself and my life. And no the hair on your face does NOT go away when you quit taking this steriod! I was a physically unfit as it is possible to be. I couldnt breath if i walked down the block forget run up the stairs. My skin was a mess. And the second the doctors cut the steriods back the lupus pain was still unbelievable. So then i was stuck taking the pain killers anyhow except now fat, ugly amd miserable. Somehow i am missing the logic behind pushing me to take prednisone instead of percocet?

Maybe someone else can explain the reason i would want to risk ever taking prednisone again in my life unless it was needed as a emergency stop gap to save my life? Other than it is inconvient for doctors and drugstores to have to deal with dispensing percocet as it is a drug some people like to abuse. I am treated as a drug abuser because i chose not to take another steriod ever? I actually would do just about anything to be able to take 4 advil again instead of the percocet. Unfortunately, it is not an option unless i wish to committ a slow painful suicide. This actually really makes me angry, That i get treated like a abuser because i dont chose to destroy my body even worse with a drug that is so dangerous to my overall health.

Sorry but please explain this logic to me if you can?
Sara Gorman said…
Prednisone! That dreaded double edged sword! I have such a love/hate relationship with that drug. You probably feel like you've talked your doctor to death, but i encourage you to try it again. You know your doc is trying to manage your disease activity (and your overall health) most efficiently, and you both know weight gain and lack of exercise can impede that management. So i would focus on that in your appt. Explain that 12 lbs isn't cool with you, and you feel like the pred isnt effective enough to get you by. I would ask for a plan of attack - how long and how much prednisone is planned, other pain med alternatives, how and when can Percocet be used. Explain why Percocet works for you. I'd also acknowledge in the appt the last thing you want is an extra layer of complication trying to come off it. You may find you and your doc are working toward the same goal. And re: weight and skin...ugh!
The worst parts of the drug! I found my dermatologist helped with my skin during that time, and i still find that drinking herbal tea throughout the day helps my appetite. (Not, like, one measly mini cup of tea. 😉 I'm talking keeping a carafe of iced herbal tea in the fridge and drinking it throughout the day.) I also found that turning my focus to lower sodium foods helped. It kinda of gave me something to focus on, because i actually had to educate myself on the subject. And exercise - so so hard when you're hurting! But even leg lifts and arm exercises in the prone position (yes, from my bed!) made me feel like i was doing something. Tracking this stuff (even two things like a single exercise and an ingredient to cut out) might help. Best of luck. Managing the effects of Prednisone can be a full time job, I know. So many layers and side effects. But it's brought me back from the dark many times. Keep us posted.
Anonymous said…
I am up at 10:30 which is nothing on the 30mgs of prednisone I am on right now, I was diagnosed with Lupus 22 years ago and now have Sjogrens, Raynauds, Pernicious anemia, genes for Celiac, so gluten intolerance, severe Restless Leg syndrome, have a history of a Clot and an aneurysm. it goes on and on, my GI told me the other day I have 27 diagnosis. That's sobering. I have been on Prednisone 99% of the last 22 years, I tried to taper and came off a few times in the early days but no more, My spine is crumbling I have bone spurs, osteo arthritis, spinal stenosis and foraminal stenosis, ( the hole where the nerve comes out to go the direct area it supplies), I have herniated 6 disk at a time and had a laminectomy 2 1/2 years ago and the symptoms and nerve pain are coming back with a vengeance. I called for more Norco and the MA said my Rheum of 22 years does not want to order pain meds any more, Went to my primary first like a good girl and my insurance does not want to pay for an MRI, Neuro surgery wont see you without current films, so I am up to 30mgs of prednisone for months for back pain now my Rt. hip is killing me, it is always the one that has hurt the most from the Lupus and the back, but this time after I lay on my right side for more than 10-15 minutes i hurt from my back down to my foot, I was paralyzed for 5 month 9 years ago from my pinched spinal cord, I cant sleep it compounds the Lupus problems, Sleep medicine want me off Prednisone at least way down, but I can't get an MRI or pain meds, If I was going to abuse it I would have in the last 22 years, I am an RN and could have gotten drugs for god sake I dont want any of them but pain meds are alot less issues then Steroids, I see Rheum in a week or so, your discussion on how to approach it is very good, I have dysphagia (problems swollowing), severe Reflux, Insurance wont let me have a double dose of the acid blocker either I have chronic esophagitis from the reflux. I am beyond frustration!!!! I lived in an abusive marriage for 19 years and finally got me and my kids out and have remarried to the greatest man in the world, for the first time I know what is meant by a partner. I don't want to give up. I want more time with him, but this is going to make people like us who want to make good medical decisions, be willing to stop all the BS. My sleep medicine Dr. said I was a walking pharmacy. It is ridiculous for every pill I take I take another because of that one. Good luck every one, We are strong people and the best we can do is advocate for our selves and teach others, I fell on this tonight looking up avascular necrosis, yes I am concerned about that as a possibility too. Hang in prayers to you all!
Sara Gorman said…
Anonymous - thanks so much for sharing! Sounds like you and Prednisone have had a long, complicated relationship. That drug
can be such a troublemaker! Best of luck at the doctor. Think that swell new guy of yours could accompany you to your appt.? Always helpful to have a fresh set of ears while you and your doctor talk. And I always like leaving my appt with a plan between visits...for my medicine, if it stops working, if I start flaring, etc. Hope you can get some answers. Even a few would help! Take care.
Anonymous said…
I was on Prednisone, among other medications for a little over 7 years, before and after having been diagnosed with SLE/Lupus Nephritis. I quit taking it, along with my other medications when I went to experiment drinking alkaline water instead. It helped for a year but on the 2nd year, my body exhibited severe bouts of cramping that made life miserable for me. Having had to have 6 or more cramps in various parts of the body was no walk in the park either. By the end of that second year, I surrendered myself again to my doctors and was told to undergo an emergency surgical attachment of a permacath (intra jugular) catheter because I'm going to be hI should be on dialysis if I want to live. Based from their findings... not taking my medications resulted to possible shut-downs of my internal organs and the only way to cancel those things is for me to undergo emergency dialysis. So I gave up running away and just accepted my fate. That also meant no more Prednisone ever because my doctor believed that I won't be concerned of it since I', on dialysis. And yet, I still get flare ups that render me having convulsive chills, internal body pains (throbbing) as well as feeling tired and wasted. They may not be as regular as when my lupus was being managed at a hospital but when it hits me, it was like going back to my pre-diagnoses days all over again. I mentioned to my renal doctor about these bouts of flares but she told me not to think much over it. Things like that happen if you have lupus, but my lupus may be dormant now, so there's no need to worry about it. It has been 9 years since I took my last Prednisone but it's effects to my body is long term. I still exhibit moon face and cravings. I'm still advised to avoid getting fractures due to accident and have my eyes checked for cataracts. I may not have to worry about uncontrollable appetites but it's more about the flares that worry me. I'm thinking of restarting taking Prednisone again to avoid having those flares but I haven't finalised my thoughts yet. Why medical technology haven't come up with better drugs to treat lupus is beyond my worst hopes. Dialysis or not, my lupus is there to stay so I guess I'll just have to put up with it, with or without Presnisone.
Sara Gorman said…
Anonymous - If only prednisone wasn't such a double edged sword, I know! It sounds like your journey has been a real learning experience...I'e had a few of those, too. :) Sounds like making a move without a doctor's consultation would be disastrous for you, as it would for any of us, so I would encourage you to talk again with your doctor about options for those flares before making any changes to medications. Be sure to explain the severity, and discomfort to your doctor. I would ask if what you're experiencing is active lupus, or residual effects from past damage. Getting you comfortable might be treated differently depending. You may even ask your doctor to clarify possible side effects of dialysis. Your body has been through a lot...and is currently undergoing even hang in there. Just keep working with your doctor before making any moves on your own. You owe it to yourself to do so! Take care - SG

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