Prednisone: A Friend or Foe?
In the vasculitis community, patients often encounter uncomfortable situations. Disease symptoms plague us. Getting used to shifted routines takes some adjustment. And maybe worst of all, new medications can cause debilitating side effects.
Among the various unpleasantries, one name makes even the seasoned autoimmune patient shudder with revulsion: prednisone. It’s the anti-inflammatory drug we all love to hate. We know it controls vasculitis issues, but that’s offset by many other problems we encounter while taking it.
I am fortunate to be many years in remission now, which I don’t ever take for granted. Regardless, the memories of my more difficult years persist. I can’t forget what it was like to be so ill and depressed due to one medication.
What is it?
Prednisone is a powerful corticosteroid often prescribed for vasculitis patients and other maladies. It replaces cortisol, the body’s stress hormone, which means that tapering it down requires close supervision by a physician and extreme care to avoid upsetting the body’s balance. Tapering too quickly usually results in unpleasant withdrawal symptoms.
The usual types of treatment involve prednisone being used as an induction drug, a maintenance drug, or both. It can be paired with methotrexate, azathioprine, rituximab, and many other common vasculitis medications.
Why do we hate it?
This nasty drug disrupts many elements of the body and mind. Its side effects are so dismal it can be tough to see the silver lining, which is that it really does help to control vascular inflammation.
Immediately after I experienced the severe onset of vasculitis at age 16, my doctor put me on a regimen of Cytoxan (cyclophosphamide) with supplementary steroids. The first side effects were the worst, because they were so intense. I woke up in the middle of the night with stabbing twinges of nerve pain in both knees that were so violent my legs would involuntarily move.
Sleep issues such as insomnia are another common problem with steroids like prednisone. I remember three-day periods during which I would unsuccessfully try to get rest because I generally lacked sleep, and then I’d finally drop from sheer exhaustion only to start the spiral over again.
Additionally, for someone who’s self-conscious about their weight, steroids are a nightmare. Prednisone caused me severe weight gain in awkward places, including my cheeks and neck (called “moon face”), as well as a fat deposit, or lump, on my upper back that made me feel like Quasimodo.
Weight gain comes naturally with this steroid, but it’s also unhelpful that prednisone causes an incessant appetite and endless cravings. I recall once eating two loaves of bread within an hour of each other, and I didn’t even feel full! It sounds unbelievable, but that’s the reality of what this monster of a drug does to the brain and the digestive system.
Finally, there’s the osteo-issue. Prednisone weakens the bones and can cause osteoporosis later in life if not handled appropriately. I’ve had to undergo periodic bone-density testing to ensure proper levels at different stages of my teenage years and into young adulthood.
What can we do about it?
Some autoimmune patients remain on steroids for the rest of their lives. But even 5 milligrams per day over a long period can wreak havoc on the body.
In response to these concerns, your physician might have suggestions that suit your particular disease case and lifestyle. For example, if you are planning to be home for a full day, you could practice self-care and get more rest than usual to help you gear up for the next difficult day.
Educate yourself about the side effects of prednisone, and find out what works best for you to cope.
Is there hope?
Until recently, prednisone was the best option for an initial kick to the system when undergoing a vasculitis flare. But recent news in the autoimmune community is that there may be an alternative.
A recently developed drug called Tavneos (avacopan), which was approved by the U.S. Food and Drug Administration late last year, has similar effects to prednisone but without as many ugly challenges. It was the first approved treatment for ANCA-associated vasculitis in over a decade.
I think I speak for the greater vasculitis community when I say that the sooner we can get rid of prednisone, the better for us all. However, we begrudgingly admit that it has helped us during some of our worst disease times. Prednisone is a mixed blessing, but one we must learn to handle.
What have your experiences with prednisone been like? Please share in the comments below.
Note: ANCA Vasculitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ANCA Vasculitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.
I like manny patients started on high dose of predsone all the way down to 2.5 a day still on it no side effects weight gain 15 lbs.
I have never been able to get below 3mg a day and it's no longer worth the fight. No real side affects at this dose, but I'll gladly attribute my weight gain to it! I've gained around 20 since 2008 dx and most I have ever been able to lose is 10 and it goes right back to previous weight unless I watch every morsel and walk 5 times a week 30 mins +.
I was initially treated with Cyclophosphamide and Prednisolone. I didn't tolerate either of them very well, and after 6 months of so of various other immunosuppressants which all had unpleasant side-effects I refused to take any more. I stayed on the Pred for about 12 months before also weaning myself off that as I found it intolerable....I developed severe osteoporosis, cataracts on my eyes, my skin bruised and bled at the slightest opportunity, and my hair thinned and became like straw. But worst of all was its impact on my sleep patterns, which I haven't been able to restore to a satisfactory level even years later. In the face of all of these things I chose to risk relapse and possible death rather than live a life where I was constantly miserable. I did develop the moon-face and dowager's hump, but didn't gain an enormous amount of weight, perhaps because I was very strict about my diet despite my appetite. The other issues have mostly resolved, except for the osteoporosis, which I now have treatment for. Fortunately, I've only had one major flare since then, which was treated with Rituximab - I was also put back on Pred at the time but again weaned myself off it after a few months. My GP respects my choices but I constantly have had to assert my right to them with my nephrologist, which adds to the angst I've experienced (although I do respect the fact that he's just doing his job and cares about me!) I am hoping that Avacopan gets regulatory approval here in Australia soon, because I dread the prospect of another round of Pred.
My side effects from prednisone were much worse. I was older, so developed osteoporosis & fractured my spine. I had to have back surgery just to be able to walk normally & was advised without surgery I could become paralyzed, become incontinent, etc. I also developed necrosis of my right shoulder & had to have a reverse shoulder replacement. I had a small inguinal hernia that got much larger - the doctors said due to prednisone - & had to have emergency surgery. I had many other side effects from prednisone but those are amongst the worst. These events all happened while on prednisone. I know it was necessary, but would give anything if I'd never had to have taken it.
It’s a godsend. So much better than dying.
The other thing with the prednisone weight gain is it's almost all fat! it makes you catabolic
i counted calories and even though i went hungry i lost weight. it ended up being mostly muscle that i lost despite working out
i was immediately weaker and 'fatter' despite being a lower weight
Just a quick note to chime in on the perception problem.
Yes, everyone is grateful for any medication that keeps them alive. Even at a cost that can effectively act like a cumulative punishment. Think of it like magic. In some stories, people get to do magic. They can fly, and change things they don't like, or get things they wish for. But there is always a cost. If the reward is small, the cost is small. If the reward is big, the cost is big.
So with prednisone, the cost is huge. You trade living, for all the side effects and long term damage done by this drug. When it was new, and for many years, it was the only treatment for many autoimmune inflammatory diseases. Gradually, and thankfully, that is no longer the case.
Add to the list presented in this article:
* Adrenal Insufficiency, which means your body stops producing its own cortisol, and managing that manually for stress and trauma is a real challenge.
* Major organ damage to the heart, liver, kidneys, etc. A combo attack which morphs depending on what other treatments you might be prescribed to take for your particular -- very special version -- of the disease.
The main take away I want to leave people with is this is not a simple matter of being grateful. Of course patients are grateful.
However, never forget that patients also have to deal with the very real issues that go along with managing life with a chronic illness. They say, what saves you today will probably kill you eventually. I know...
That sounds fatalistic to the uninitiated. But to those living in the trenches, people who understand the spoon theory story, and whose lives are permanently altered at the moment of diagnosis... those people know that being grateful does not mean you cannot also have strong opinions about the effects of their medications.
I was on Prednisone for a year and a half, though I recallit tapered after the first six months.
Not sleeping was what I noticed. But they told me that would happen.
I could barely.move when I went to bed and slowly woke up in the hospital some days later. They knew within two weeks that I had GPA, but they wouldn't let me out until I could walk, over five months later, three months in rehab. I barely ate for nine months, the diet restrictions, institutional food, reacting to the Imuran badly when I got home.
So I didn't notice weight gain, or rather the weight gain was needed.
I did have enlargement kind of below my ears.