Be the change you want to see…

I was recently asked about my thoughts on prednisone (steroids). Honestly, combatting the side effects of prednisone is what led me to start this blog. I’ve been on varying doses of the drug for two years now. At one time I was taking 60 mg, then weaned down to 40 mg then went off and then back on. I’ve been on 15 to 20 mg consistently for the past eight months or so.

Here’s what I know about prednisone: It’s a synthetic corticosteroid that is most often taken orally but can also be administered via injection. It is a highly effective immunosuppresant and was once called “the miracle drug” (which my former retinologist was so fond of saying). But the down side is that it has many, many side effects, which are inevitable with long-term use. I’ve been told by doctors that everyone who takes prednisone will experience side effects - they’re inescapable.

After only seven days of prednisone use adrenal suppression occurs and the body is unable to synthesize natural corticosteroids. This dependency is exactly why steroid users cannot just stop taking the drug; stopping suddenly can cause adrenal failure and death.Side effects include high blood glucose levels, fluid retention, insomnia, mood swings, weight gain, osteoporosis, glaucoma, depression, decreased libido, headaches, acne, and the list goes on.

Even though prednisone has helped keep my eye inflammation at bay, the side effects for me have just been too much. I’ve been living on an emotional rollercoaster and all who must share my space are forced to go along, too. One day I feel great and ready to take on the world; the next I’m so depressed I can’t function. Some nights it takes me hours to fall asleep and in the morning I am completely exhausted. I went from being a patient person with a good outlook to being short-tempered and bitchy. If I lived alone, I suppose this wouldn’t be so bad but I clearly see the impact on my husband and children. I now do everything within my power to temper the adverse mood effects. If I’m feeling bad, I remove myself by going for a walk or reading a book or just doing anything away from the general populous. But living in that up-and-down swing can so easily make one feel crazy…or unstable at best.

On June 7 I will begin receiving a new drug as part of a clinical trial (alpha feta protein for uveitis). After I’ve been on the new drug for two months I will be weaned off the prednisone and the two other drugs I’m on, as well. At that point, I plan to throw a party. The only way I will agree to using prednisone again is if blindness is the only other option.

The bright side to my experience is that I now have a great deal of empathy and sympathy for anyone who must use the drug. As it is commonly used in the treatment of various autoimmune conditions, be assured there are a lot of people using it.

I did some quick searching on the ‘net and read that autoimmune diseases are the third most common category of disease in the United States after cancer and heart disease, affecting anywhere from 14 to 22 million people (National Institutes of Health). If that many people are on steroids and the side effects are inescapable, just think of how all of those people are impacted emotionally and how that gets sent out into the world. It makes me simultaneously grateful that there is a drug that fends off inflammation so well and regretful that medical science has such limited options with such deleterious effects.

Anyway, that’s my spiel on prednisone. To any who are on it - my sincere best wishes.

I enjoyed this missive from the daily guru (thedailyguru.com):

Create space

“All this talk and turmoil and noise and movement and desire is outside of the veil; within the veil is silence and calm and rest.”

– Bayazid al-Bistami

We need to create space if we desire to change and grow. Only in emptiness can meaning, intuitive guidance and truth arise.

Give yourself space by spending time in nature, taking an hour or day off, enjoying quiet moments for reflection. Take time to smell the roses. Breathe in the wonder of life and its bounty. Open so your deeper awareness and imagination can percolate through mundane thoughts and activities. Let go of both resistance and force to allow yourself to connect more deeply to life.

“I do only want to advise you to keep growing quietly and seriously throughout your whole development; you cannot disturb it more rudely than by looking outward and expecting from outside replies to questions that only your inmost feeling in your most hushed hour can perhaps answer.”

– Rainer Maria Rilke

I think the things that bother me most about BSRC is that it’s rare and not obvious. I mean, to look at me, I appear fine. And generally I feel fine. Take away the prednisone and I feel great, actually. So, I find myself explaining, over and over, to well-meaning inquirers what this condition is and how I’m impacted…it’s an autoimmune condition that degrades the eyes…it can cause blindness…the trigger is unknown…etc., etc. But I think now, after having the diagnosis for more than a year, that I’m in a bit of denial. I’m tired of talking about it and especially tired of seeing the sympathy that typically washes over people’s faces when they hear me discuss it. I don’t want to pretend it doesn’t exist; there is a lot of anxiety that surrounds it and I feel I need to express that. But it’s the pity I see in others that makes me want to remain silent.

Yet I’ve listened to other people share their own health challenges (let’s face it, as we get older ALL of us will have them) and I’ve had those same feelings of sympathy. So what’s the best response? You want to show you care and are concerned about the other but you also don’t want to insult him or her. I do know others who seek attention by sharing their seemingly incessant complaints that monopolize all conversation and I can’t help but feel the sharer is looking for attention and/or pity. And maybe that’s the rub. Maybe I associate others’ pity with that blatant attention-seeking and to even consider that I am that makes me cringe inwardly.

I don’t want any condition, autoimmune or otherwise, to become my life. I want to heal from this, to meet the challenges it presents, to fully learn the lessons this situation is offering me, and then I want to move on to whatever is next.

By the way, here’s a link to the study I’m participating in, for any interested:

http://www.merrimackpharma.com/newsEvents/2007/Uveitis_Initiation_4April07_FINAL.pdf

Welcome to my inaugral post. I was diagnosed with Birdshot Retinochoroiditis (BSRC) inApril 2006 after experiencing a year of symptoms. This auto-immune condition is rare and is a form of uveitis - inflammaton of the uvea. I’ve been on varying doses of oral prednisone - let me tell you NO FUN - as well as two other immunosuppresents - cellcept and cyclosporin. Upon beginning this blog at the end of May 2007, I’m preparing to participate in a drug study for moderate/severe Uveitiis, as the meds I’ve been on aren’t working. This blog is intended to chronicle my journey, my challenges with the condition and the meds, and to lend insight and hope to others facing similar situations. I welcome comments.