My Ugly Friend

I have to say, I feel like I am almost an expert on prednisone, patient wise at least, as I have been taking it intermittently for 8 years now. Currently, I am on my longest usage at almost 14 months. Starting at 60mgs per day and varying. Daily now I am on 15mgs per day and holding.

The first time I was prescribed prednisone my lung function was extremely low. I had trouble doing ANYTHING. Just rolling over in bed would leave me breathless. I took the stairs in my house on my bum because I couldn’t vertically climb them. I hadn’t been examined by a specialist at this point, but during a pulmonary function test, my stats were so low I was immediately hospitalized. I was given oxygen and prednisone and within days my breathing became easier.

I thought at the time – this is a miracle drug ! It not only helped my breathing but because the dosage was so high, my energy level was supernova. Little did I know then within a very short time I would gain 40 pounds, my cheekbones would disappear, as did my eyes aka moonface & the mood swings were unreal. What moods sank in the most was depression with bursts of anger & sadness.

Prednisone did save my life – so was absolutely necessary. The side effects, for anyone who has been on it for more than a few days, were incredibly difficult. Not just for me but my family as well. I still break into tears from a hug, a look of sympathy, a kind word. Anger props up over someone eating the last bite of chocolate in the house, the shoes not being aligned properly, any comparison from others saying “well I have taken prednisone and it’s not that bad”. She-Hulk emerges and look out for the shit-storm. I try to explain it’s the side effects of a very strong medication but not everyone is understanding.

I have been told that I cannot blame everything on the side effects of prednisone. Ummm, ya, I can. When you have been on it as long and as much as I have, please judge away. If not, I would prefer you say nothing. Or even better something supportive …  What ? Supportive ?

If you have never been on this drug long term, you can have no idea what this drug does to a person physically & emotionally. I have discussed this with my therapist and he laughs when he hears someone has downplayed the emotional tole that prednisone takes. He is a specialist for patients with chronic illness so is very familiar with this drug as it is prescribed for many inflammations. He said he has had patients that have halluncinations, seeing a marching band cross their rooms, or believe they are King Henry VIII. Comparatively, I guess I am not too bad off. It still makes me cry or freak out when I try to explain but am dismissed.

Because my lung disease is rare, I have yet to meet anyone with it or be treated for it. My lung specialist is determined to get me off prednisone (except in rare occasions which I can accept). I have tried Imuran, which my body rejected immediately. I am now trying Cell Cept, with prednisone of course, but this drug takes 8-10 weeks to see if it will decrease or stabilize my lung inflammation – which we are all hoping it does. At that point, I can start to taper off prednisone.

Which takes me to my next point about prednisone, the tapering process. I am not sure which is tougher, being on it or being taken off of it. I am exhausted all the time. I have no energy or will to participate in anything. This adds a layer of guilt of what a bad mother and wife I am, no matter what my husband and kids say. They are the true heroes of my life – living with me cannot be easy.

As hard as I try, I am just so tired that all I want to do is cry. Part of the depression from the prednisone, part of my sadness at this situation. I would, as any one of us with a chronic illness, change this if I could. The lung disease is scary and I have no control of when the inflammation is going to flare up. But my ugly friend prednisone is always there … a necessary evil.

I do have amazing support from close family & very close friends who are understanding and have seen the effects of prednisone first hand. They let me cry, create a fury train, rant and rave, sleep, visit anytime I ask and remind me that they love me no matter what. I have given all of them the option to walk away and God bless them, they have stayed by my side. I cannot explain (and here comes the tears) what these people mean to me. I cannot express my gratitude enough.

This a short version of my experience with prednisone. Anyone who takes it as part of of their daily med has my respect, because you my friend, are a warrior. This is not an easy road, which is very much an understatement. But I have hope. Hope that my ugly friend will only be necessary for a few more months. That I will be able to say, thank you for saving me. You are kind of a bitch, but I do appreciate what you have done for my lungs. Now go back where you came from and don’t let the door … well, you know !

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