My Relationship with Prednisone: Effects, Side Effects and How it Changed my Life Forever
94There is no doubt that prednisone saves lives and probably saved mine. But this prescription steroid, when taken in the long term, produces some effects, side effects and serious complications that may create lifelong problems. Most of the articles I write about medical topics are written from the perspective of a doctor, explaining to others what I know. This one is personal, though. In the last seven years, since being diagnosed with ulcerative colitis, I spent quite a bit of time as a patient and parts of my story are woven into the fabric of information about this prednisone.
Prescriptions of prednisone usually are written for
- asthma and other lung conditions
- autoimmune diseases like rheumatoid arthritis, lupus, inflammatory bowel disease
- allergic reactions
- skin diseases
Prednisone supresses the body's immune response and inflammation, allowing relief from
symptoms when the immune system is "confused" (as in my case) or
overactive.
Prednisone is an catabolic steroid. That means it breaks down body tissue (like muscle and bone) rather than build it up. Anabolic steroids are the type illegally used by bodybuilders and athletes since they have the opposite effect and help build muscle.
Have you ever taken prednisone for any reason?
See results without votingOsteopenia and Fractures Remain a Risk after Prednisone is Stopped
Background
I was diagnosed with ulcerative colitis in 2003. At first, I had a pretty mild case and used only mild medications to treat it. Ulcerative colitis is an autoimmune disease where the immune system mistakenly attacks the colon. The cause is unknown, but current evidence shows that it's probably a combination of genetic predisposition and an environmental trigger. Along with Crohn's disease, UC is an inflammatory bowel disease. These inflammatory bowel diseases can be life-threatening. They should not be confused with irritable bowel syndrome, an often debilitating condition, which is not life-threatening.
When I got pregnant with my first child, the colitis got worse. The mild medications stopped working. Because prednisone was the safest drug for UC during pregnancy (that would work), I started a low-dose regimen. No problem.
Unfortunately, the colitis continued to get worse and I started the on and off, up and down cycles of prednisone use. Other medications would only work for a short time or not at all. During my second pregnancy, the colitis became pretty bad. It would improve on prednisone, but nothing else worked. I was requiring quite high doses at this point. Cumulatively, I spent the better part of two years on moderately high to high doses of the medication, which is why I ended up with lifelong consequences. Prednisone saved my life, but changed it forever.
I Felt Great, Most of the Time
While on prednisone, most of the time I felt great. I hoped that after I had my baby, I would improve and get a remission. I didn't and needed to continue the prednisone while breastfeeding. Luckily, the mental changes of prednisone means I didn't need much sleep and the manic energy made me quite productive. I would get up before 5am to exercise. I knew that weight gain was an expected side effect of prednisone and I was determined not to gain weight so I would just spend time that would normally be spent asleep, exercising instead. And with all the energy I had, I would exercise and not gain weight so that shouldn't be a problem. WRONG.
I worked out 2 hours a day, four or more days a week, hard. I realized I was still gaining weight, so I limited my calories to 1400 per day on non-workout days and 1550 calories a day on workout days, then cut back further when that didn't work. Surely, I would lose some of the weight and stop gaining. WRONG. I became depressed that my efforts were failing. I gained TWENTY pounds in a year and the depression never abated. I figured out later that the expected weight gain for the dosage and length of use would be closer to 50 or 60 pounds of weight gain. Still, I found it hard to be happy about only gaining 20 pounds of fat while working out like a maniac and limiting calories in spite of the increased appetite.
My face was puffy, my hands were jittery and I was irritable (exercise saved me here, too). I came to the very unscientific conclusion that prednisone enabled your body to convert even the air you breathe to fat.
PREDNISONE SUMMARY
Drug Class: Corticosteroid, specifically glucocorticoid
Mechanism of Action: Works at the DNA level in the nucleus of cells to suppress inflammatory mediators. This is a simplification of a complicated process
Uses: Used to suppress the immune system and to suppress inflammation
Common Conditions Treated: Ulcerative colitis and Crohn's disease, rheumatoid arthritis, ashtma, lupus, psoriasis, allergic reactions, many others
Side Effects: Affect nearly every body part and organ system (see discussion and links)
Dosing: Usually 5 to 60 mg per day. This dose is adjusted to the needs of the patient. Courses longer than a week need to be tapered to allow the adrenal glands to start making their own steroids again. If this isn't done, life-threatening, low blood pressure and other reactions may occur.
My Other Side Effects
The list of potential side effects of prednisone exceeds 100 items. Every system in the body is affected. Side effects are possible in anyone taking the medication, but incidence of side effects and complications increases at doses over 10 mg per day and/or a course lasting longer than about two weeks.
Other than the weight gain, I did have increased energy and a sense of well-being, which is normally not a bad thing. I decided one day that I should change the fan mechanism in my laptop computer (which was almost dead anyway). This would normally be ok, but in this particular model, the fan was buried under layers of electronics and panels and circuitry. With the prednisone energy, as I called it, I could not be bothered to carefully diagram or photograph where the parts came from. I got the new fan in, but when I got the computer back together, I had over 60 leftover little screws. Yep, 60! Uh, no, it didn't work.
The worst thing I have to deal with as a long-term complication is osteoporosis at the age of 40. This one really upsets me as I already fractured my foot as a result of a minor injury. I like to ski and hike and so on, but now I have to worry that every fall or slip is going to result in a broken bone. I worry about fracturing a hip before I'm 50. Of all the problems I've had with prednisone, this is the one that makes me angry. I remind myself that I really didn't have a choice due to a combination of circumstances, but what a trade-off.
I have since had my colon (yep, the whole thing- that's another story) removed to rid me of the colitis, but prednisone is the gift that keeps on giving years after you stop taking it.
Partial List of Prednisone Side Effects and Complications
There are so many potential side effects and complications of prednisone that I won't bother listing them here. They can be found in medical books and on medical and pharmaceutical websites. Luckily, most of the side effects resolve shortly after stopping prednisone. These are just a few examples by body system.
- Neuro/Psych - mental status changes such as depression, anxiety, mania, euphoria, nightmares, memory loss and psychosis.
- Ophthalmic (eyes) - blurred vision, cataracts and glaucoma
- Cardiac - changes in heart rate, worsening of heart failure, blood clots, high blood pressure
- Musculo-Skeletal - decreased bone density and osteoporosis, avascular necrosis of the hip, muscle breakdown and protein loss
- Skin & Hair - easy bruising, hair loss, fragile skin, acne, facial hair in women
- Endocrine & Metabolic - Adrenal insufficiency (can lead to death if prednisone is suddenly stopped, instead of being tapered), sodium and water retention, disturbances in potassium, weight gain, glucose intolerance and diabetes
- and so on and so on. See the Drugs.com link for a more thorough list as it quite extensive.
- Prednisone Side Effects | Drugs.com
Comprehensive and accurate Prednisone side effects information for consumers and healthcare professionals. - The Top Five Worst Side Effects and Complications of Prednisone
Prednisone is a catabolic, prescription steroid medication. Usually used to suppress an overactive immune system or decrease inflammation, prednisone is used in treating diseases such as asthma, allergic reactions, autoimmune disorders and some cance
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What a disaster! But I know for a fact that you can gain weight just by breathing.
Sounds like you are very courageous to deal with such a bad disease.
Thanks Melpor & Austin. I feel lucky overall. I had the colon removed and have been on no drugs for over a year. I just have to deal with the "leftover" effects. Could be a lot worse.
You can imagine what a fun patient I was though, being a doctor and all, LOL.
Austin
This is another example of why the FDA is in bed with the drug companies, and while the country no longer allows tobacco or alcohol ads, they don't care about prescription drug ads.
Prednisone has been around for a long time, and it is a knee jerk prescription from doctors. Yet at the same time the doctors bad mouth natural remedies. Not sure about prednisone and a natural remedy to replace it, but in general there should be more emphasis on non prescription solutions. Theer should also be more focus by doctors on the side effects when prescribing any drug.
I was given Cortisone for my Eczema years ago, it never cured it, there was only temporary relief as long as I took it. They wean you off of it by dropping the number of pills per day, until you stop. This could take weeks, and then when I was down to a half a tablet a day, I could get another attack.
My opinion on much of the prescription drugs out there is that they are like lumps in a carpet. The object is to move the lump somewhere else, hopefully where you can't see it, but it is still there. It will pop into view eventually, but there will be no realization that it is the same lump in a different location.
Good one.
Just a couple comments.
1. I agree that prescription drug ads on tv are more harmful than good.
2). You are entitled to your opinion, but unless you are a doctor, you probably don't know for real what motivates them, allthough I find that most people seem to think they do. I tried "non-prescription" remedies until my blood count dropped so low that I was having symptoms and was having a hard time functioning. Didn't work. Thank goodness prescriptions were there to save me. Prednisone is prescribed because it works, sometimes when nothing else will, as in my case. All docs know it has bad side-effects and would love to get their patients off as quickly as possible. It's not always possible.***Knowing the bad effects of prednisone, if there was any natural substitute, I would have taken it.*** However, even a natural substitute that suppresses the immune system is going to also have bad side effects, even if they aren't the same as prednisone's. It's a function of suppressing the immune system, which is what is necessary in autoimmmune diseases.
3). I agree, prednisone is not a cure. It suppresses inflammation and immunity. In the case of an allergic reaction, for example, this helps the body get the problem under control so it can heal itself. Often the problem is gone by the time the prednisone is stopped. In other cases, like your eczema and my colitis, the body just can't do what the drug did. The disease is still there and we weren't lucky enough to be among those whose bodies could "take over" from there, thus the symptoms returned.
4). I'm sorry you've heard doctors "bad mouth natural remedies". Most doctors I know (that would be in the hundreds, maybe a thousand) would be open to natural rememdies that worked. The problem is people want the doctor to tell them something that we don't know...that natural rememdies work. If we knew they worked they would be called medicine. Contrary to popular belief, we docs don't get a kickback from the drug companies for every script we write.
I'm not "picking on" OpinionDuck here and he/she certainly makes some good points, but want people to know that docs aren't all that bad. Mostly, they DO want to help and that IS their (our) motivation, really. If you go to a doc with a problem that can be helped by a prescription, you are probably going to get one. Of course drugs have side effects, so would "natural" remedies that do the same thing.
Ironically, when docs don't give a prescription, we get this "I went to the doctor for this cold and he told me I to get more rest and fluids, didn't even give me a prescription. What a quack."
If you'd like a humorous look at this, please watch this...
http://www.youtube.com/watch?v=y1yxDWxUIM0&playnex
Thanks for listening :))
Oh, yeah...on the video. gotta watch most of it to see why it's relevant here. And I should warn about the foul language too, although I get the feeling no one here would be too easily offended.
Thanks OpinionDuck for joining the conversation :)
Tahoe Doc
My mother and father in law died as the result of doctors, hospitals and even the nursing care.
They didn't have a clue as to what they were doing as is the case with most of the doctors. Yes they know a lot but much of it is knee jerk and run by simple procedures that you can get right off the internet.
Eczema and Psoriasis have remained mysteries to the medical profession for over a half century.
Jerry Lewis would have to live to be two hundred years old before there will be a cure for MD.
You don't have to be a chicken to judge an egg.
I watched my father law go into a hospital with a broken femur, and three months later in the hospital die.
He had agreed to all the procedures that the doctors suggested. The femur had broken because it was at the end of the shaft from a previous hip replacement. The bone there just died and crashed. For a year before that hip was causing him to be unstable in his walk, but his orthopedic doctor never found anything in more than several examinations in that year.
After the hip was again replaced to fix the broken bone and because the previous hip replacement was loose.
He was told he had to stay off the leg for six to eight weeks and during that time he retained water, We are talking about twenty pounds of water. The doctor and the hospitals ran their usual protocol of diuretics but it didn't work. He spent his entire stay in the hospital on oxygen. In the final month of his life they had blown out his kidneys, so he was on an every other day of dialysis. It was shortly after one of these dialysis treatments that he died unexmpectedly even by his doctor.
The disalysis treatments weren't even reducing the water retention. He had a team of doctors from different specialties and they were useless. They sent in the alternates during the weekends and holidays as well as some weeks of the months. If was during the fourth of July holiday that he had a significant turn for the worse. Up to that point he was doing well with therapy, then bed ridden.
He had trouble breathing so they put a mask that they use for sleep apnea, but that didn't work and it was extremely difficult for him to wear it for extended time periods.
All the doctors coming to visit him went through the same ritual no matter what there specialty.
Check his breathing, ask him some of the same questions as the other doctors and leave. There was usually no plan given to the family. The day that he died he had been in ICU for about a week and they were going to move him back to his room. There was no mention that he would die.
The whole medical system is pathethic, the hospital is run by insurance and insurance wants you out of the hospital whether you are better or not.
The day that my mother died, I had talked with her doctor and I said I was against doing the procedure he had suggested. He went God on me and caustic because I challenged his decision. She died from that procedure that day.
Chickens don't eat eggs, people do.
Don't ever become a patient.
Prednisone, "When it is good, its very, very very good; when it's bad, it's horrid!" In many ways, prednisone is a life-saver (thinking of the child with asthma) but we must not ignore the downsides of steroid therapy. One in particular I'd like to mention is the steroid effect on bones, bone-thinning in particular.
I'd imagine that TahoeDoc has a more scientific opinion about this, but my comments are based on personal experience. I was given large doses of steroids to suppress an adverse medication reaction and it probably saved my life. Then, I was given steroids when I was diagnosed with lupus (SLE). That was it for the steroids.
Some years later, I developed pain in my joints that wasn't the same as my lupus joint aches. (Tahoe, you see where I'm going here, I know you do!). Several MRIs later, I was diagnosed with avascular necrosis, a condition in which oxygen and nutrient-carrying blood doesn't get to the bones and the bone dies. Why? Nobody has a clear answer, but steroids are strongly suspected.
Avascular necrosis or osteonecrosis has changed my life forever. Because of the pain, I've not been able to exercise a lot and because of lack of exercise and as a side effect of prednisone, I experienced serious weight gain of @ 70#. That lead to the development of pulmonary hypertension.
Now, I'm taking a water exercise class; because of the pulmonary hypertension, need to see a cardiologist. I don't take steroids now and haven't for a good ten years, but their damage can be permanent. That's why I say, "when they're good, they're very, very good; but when they're bad, they're horrid!..."
If you need them, you need them, and take them. But don't take them on a lark and always be in touch with your doctor about concerns/side effects, and follow up. Advocate for you.
Does anyone know what the FDAs position on the side effects of steroids? R and D has been done and drug manufacturers know of the adverse affects of steroids. Is there research being done to find an alternate medication with fewer side effects?
Hey all, thanks for the discussion.
OD- believe me, I totally get it. I've been on both (actually all) sides - doctor, patient, daughter of patients, fighting with insurance companies, trying to find less toxic treatments. I have been there. I'm sorry you had such horrible experiences.
Anne - I think your first sentence says it perfectly about prednisone AND many other therapies. It sucks, there are severe, life-altering consequences as I know having osteoporosis at 40. But, I ask myself, "what is the alternative?" I could have gotten sicker and sicker until I died from a complication of the disease and left my children without a mother. Avascular necrosis is my biggest fear and I will never be free of the risk since I was on so much pred for so long. I know that. Everytime I take my kids skiing or feel a "twinge" in a hip, I have an alarm of fear going off in my head that it could be. I will never be free. But, I do not think my docs were cold and uncaring in their treatment of me. They did the best they could with what was available to them.
*Sometimes we only have choices between two things that suck... disease or treatment, both of which have complications. I get it. I hate it, too. But that's just the way it is until a better alternative comes along. Will it? I don't know.
**Everyone** Medicine and medical care are not perfect, far from it. In another 100 years, our treatments will probably seem primitive and cruel, much like we look at the treatments of long ago. I wish things were better, but sometimes, just "ok" is the best we can do. Sometimes, like with cancer, there really is nothing we can do, yet.
But, no you cannot put chemicals in your body and expect not to have side effects or problems. No one promises that. Probably won't happen in our lifetime.
Unfortunately, the system is screwed up. Everyone hates the pharm companies and I think there are lots of slimy elements to them. However, they are motivated by $$. They dump billions of dollars into R&D of new drugs. They all want to be the one to develop the "miracle drug" for this or that. The way the system is set up, we need them to keep doing it if things are going to get better. Sad, but they are where new and better treatments come from, along with the less than perfect, dangerous ones. What to do? Every individual has the choice to refuse medicines. But, if you take them, you are not exempt from the bad parts of them either. Neither was I. That's just the sucky reality.
It really sucks when the problems (doctors, pharm co's, insurance co's) are so tied in with the solutions. The system is screwed up so badly and I don't know how to fix it. I don't know if there is a fix since it's all so tied together. It's really sad and frustrating. There are many reasons I am moving away from clinical practice. I can't even imagine how my friends in primary care feel.
Hi, Doc! Another great article! Informative and real! Have always called prednisone the 'devil drug', but that is because its need is critical; you are right, it is often a life or death choice. With asthma or COPD, you literally make the choice- if you want to live, you take prednisone. The side effects go right along with the choice and you accept them.
I have no experience with ulcerative colitis, but am happy that you are now prednisone free.
Every drug has side effects. Medicine is not a clear cut science. If we had the answers to every health issue, it would be wonderful, but that is not reality. For myself(COPD) and my son (a chronic asthmatic for 30 years), prednisone has been a lifesaver when it has been needed.
As for natural remedies, sometimes they can be helpful, but they also have inherent risks.
The real key is finding a doctor you trust, and yes, even like, and knowing and accepting that they are not infallible and don't know everything. No one does...
Please continue to write these articles. As I have said before, we need someone like you to inform us. Thank you again!
Jillian - "The real key is finding a doctor you trust, and yes, even like, and knowing and accepting that they are not infallible and don't know everything. No one does..."
I like this. I hold myself and other doctors to a very high standard. But, that standard is not perfection. Some fall short of even doing their best, and that makes us all look bad. The rest (and majority, in my opinion) of us really try hard, to the point of sheer exhaustion and overwhelming stress to help in the best way we know how. But our choices are not perfect, and neither are we.
You are always so kind in your comments, thank you for that.
I have had UC for over 30 years and got it shortley before my 1st child was born. That was kind of a drastic move to have your colon removed. It has many other functions then you can begin to know. It is your diet and stres that causes the outburst. Since I know what caused mine to imflame and changed what things I ate it has been in remission for the last 15 years. Yes 15 YEARS. There is also something else that you could try and that is the off brand of Prilosec. Yes there are dangers with taking that drug as well, but since i have been taking it for GERD I have not had any problems with my UC. When it would flare up I would just eat crackers and ginger ale.
There is someting else that causes UC and that it a gluten intolerance. Get yourself off of sugar, Dairy and Gluten. Know your own body and don't let the Doctor's tell you what is wrong with it. It's yours, not theirs to take care of.
I have also been on prednisone too for short periods of time for other ailments. Since I have listened to my Soul--a Journey that I have taken to learn what my body is telling me my body has changed--fr the better and I have not been to a doctor in at least 5 years.
Best of luck with your UC.
Thank you Lady. I tried all of that and more...diets, herbs, aloe, probiotics, kefir, off-label meds. I had severe pan-colitis and nothing else worked. I was at risk for having my colon perforate and was anemic. Since I had surgery, no more disease.
I am now cured of my UC. I take NO medicines for UC (I only take thyroid medicine that I was taking before all of this and calcium/vitamin D for the bones).
Not everyone can benefit from the same treatments and I was thrilled that surgery was an option for me. Best thing I ever did! Glad you found what worked for you, but it won't work for everyone, (just like not everyone should have surgery), whether they listen to their body or not. Although,my body told me to get the diseased colon out, and it was right :)
And gluten sensitivity can be a trigger for many GI issues, but was not for me. Mainly, it is the cause of celiac disease (gluten-sensitive enteropathy). It can be an issue for irritable bowel which is NOT the same as inflammatory bowel disease.
Terrific Hub. I've rated up and will bookmark for my wife to read. She's a nurse practitioner.
Thank you for the compliment Don. If I had to do it over, I might choose nurse practitioner.
Well I am glad that you got somethig out of all this and are sharing it. I know aobut Celiac and I did some research on it. Milk is also a culprit for alot of diseases and I did a hub on that too and one for baby formula that some doctors are telling htat do not include any milk products but do.
Tahoe,
There's on 'online' ON support group to which I belong, as ON really does mess up your life. You'd be amazed at the number of docs with little to no working knowledge of ON. or how to treat it; Is it THAT rare?
Since as a result of ON, this triathlete wasn't able to compete any longer and exercise really went the way of the model Developed PAH, from lack of exercise? But it's there, though mild. I don't like my future and I owe so much to lack of exercise due to lupus, prednisone. But you can't see ON, so in the eyes of the world, you're normal AND lazy.
Hope you continue to keep a lid on UC without ON. But, when you have to have steroids, you have to have them. Do you thing the drug companies are looking into an alternative to steroids?
Don, I'm a nurse, and would wish I'd chosen the NP route, to!
I had LOTS of steroids in the past due to severe asthma and allergies.
It's a long story, but I've been mainly steroid-free for 10 years. Yay!
I had to have hip replacement surgery at 49 years old. The docs think probably due to all the steroids. I am now 51 and finally healthy enough to take up a life long dream of backpacking.
I do have residual effects from the steroids with my endocrine system. But all in all, I do pretty well.
Thanks for the article!
~carol welch
Thanks to all who have contributed to my stockpile of information concerning this drug. I am a psychologist and try to look at the psychological as well as physiciological side of drug interactions and efficacy. In my own case, I have inoperative trigeminal neuralgia. The pain is unbelievable and there is no cure or operation to help me. My doctor gave me this steroid two weeks ago and my pain subsided to a wonderfully, nearly pain free level...until I stopped taking it 6 days later. I asked her to go with me one more time to see what would happen and she did. The same results...no pain until the day I stopped taking it. After reading this new information, I am hesitant to ask her to go one more time. The pain is getting bad again today but I think I'll shy away from another dose at this time. Perhaps I will wait until it is unbearable again and see if the doc will go another round.
Thanks so much for sharing your story and creating this hub. I am currently on a 4 week regimen of Prednisone to help a pinched nerve. I honestly can not wait to be off of it, as the side effects have been more than a little scary. I am hoping that I won't suffer any long term side effects later on down the line.
I was on prednisone for Thrombocytopenia at age12 for almost 2 years. I am now 26 and have been experiencing quite a bit of joint pain for a couple years now...as well as what feels like nerve pain down one side of my face and a number of other symptoms that come and go. Depression and anxiety have plagued me off and on for as long as i can remember(since use of prednisone). I guess I'm really wondering if prolonged use of prednisone can lead to the development of other diseases this long after stopping
use. My boyfriend of 8 years has accused me of being a
hypochondriac(?) many times due to the amount of odd symptoms I experience, but my body and mind (psych) feel how they feel and there's nothing I can do to change it. I've just learned to keep my problems to myself until things affect my daily functions. If "it always seems like there's something wrong with you(me)", imagine what its like for me. Is there any research that shows a link between the two?
I'm sorry for what you are going through. It stinks to feel like something isn't right and not be able to figure out what is going on- and not be able to get the support you need for that.
I think it's really hard to know what might be long-term outcomes of prednisone use and what is a new issue and unrelated. What we experience as patients isn't always documented as a known problem with a particular medicine. That's not to say it doesn't happen, just sometimes we don't know and can't really answer the question. Prednisone definitely changes your body, there is no doubt about that. Unfortunately, we may never know what all the long-term consequences are of prednisone.
I can tell you that if you were on prednisone for 2 years at a young age, you should at least probably have a bone scan, especially if you have joint pain. More importantly, you need to be plugged in with a general medical doctor (at least) or be able to discuss and sort these issues with a health professional.
A good place to start would be to discuss the depression and anxiety with a doctor and get some treatment for that. I say that because when our minds are working inefficiently, it is much more difficult to perceive correctly -- and deal with -- anything else, even physical issues.
Good luck. I wish I could be more help, but you need some one-on-one attention from a doctor to help figure out what is going on. I hope you can find that and that you feel better. I feel for you and what you are going through. :(
Thank you, I agree. Maybe one day it won't be so difficult to find a doc that listens without sarcasm when one doesn't have insurance, but I know they are out there. : )
I have Crohns and was on prednisone for a couple of years. It affected me so much emotionally that my husband said I had to get off of it. I have osteoporosis too and I'm sure the predisone didn't help.
Yep, Barbara Kay- That stuff is nasty in so, so many ways. The gift that keeps on giving for sure. Of course it also saves lives. I couldn't wait to be off of it, though.
I share the same feeling you explain above. Thank you for posting.
melpor Level 4 Commenter 16 months ago
This is another good and informative hub. I am learning a lot from your hubs. My sister-in-law was on Prednisone due to Lupus and I definitely remembered her complaining about some of these side effects.