Monday, June 13, 2011

The Prednisone Wall

"Obstacles don't have to stop you. If you run into a wall, don't turn around and give up. Figure out how to climb it, go through it, or work around it."

~ Michael Jordan



I am staring up a giant wall that I like to call the prednisone wall. For any of you who may not be familiar with prednisone, let me elaborate. It is a medication called a steroid used to treat a variety of medical disorders including asthma, arthritis, inflammatory bowel disease; basically any type of disease that involves inflammation. It is a blessing and it is a curse. It can save your life and when not used properly, it can kill you. Prednisone is one of the least expensive medications I can get my hands on, but it comes with quite a scary list of risks and side effects, including but not limited to: diabetes, depression, insomnia, memory loss, ulcers, bones loss, cataracts, life-threatening infections, the list goes on and on. You know how when you get your prescription filled at the pharmacy and it comes with the medication fact sheet listing all the possible side effects? Yeah, well the problem with prednisone is that if you are on it long enough or often enough, you WILL get those nasty long term complications they warn you about. Guaranteed.



I have been on and off prednisone at least ten times in the past two and a half years for an autoimmune disorder. Sometimes it has a course of five days but more often than not, the course has run at least four to six weeks; sometimes even months. I have never in my life had the type of love-hate relationship with anyone or anything that I do with this medication. It has helped relieve joint pain that was so severe that I wished I was dead. It has helped me to breathe. It has relieved inflammation in my sinuses and in my stomach, allowing me to eat normally again. It has been my lifesaver.



It has also been my curse. I have been on it enough times now that I am better prepared for what will probably come in terms of side effects; although every time does seem to be a little different depending on the dose and how long I am on it. Until four days ago, I was off it for six whole months; a record for me. However my rheumatologist and I agreed that it was time to go back on it due to the possibility that I have autoimmune induced hearing loss and the need to try and prevent further complications until I am evaluated by an ear specialist. It was also time to try and settle down some other symptoms that just were not getting better on their own.



So, today is day four. Although the insomnia has not been a major issue this time around, the hunger and food cravings were in full force over the weekend. If you've never experienced prednisone, you don't know what you're missing. You eat a full meal and thirty minutes later you are starving. All you want is sugar, refined carbohydrates, anything bad for you. No exaggeration, I could eat a full meal every two hours and still be hungry. I could sit down for dinner and eat a whole large pizza by myself. And half a loaf of garlic bread. And a plate of brownies. I would still be hungry in two hours after this elaborate feast. Food is all I can think about when I first start prednisone. I made the decision before I took that first pill four days ago that I was just going to do the best I could the first 48-72 hours. If I was hungry, I was going to eat all the calories I was hungry for while trying to keep it somewhat healthy (that kind of worked...a little). Usually after that period, the hunger and cravings settle down. I was going to cut myself some slack and that I did. I got as much exercise as I could as well.



The prednisone wall also makes me jumpy and restless; another issue that usually settles down within 72 hours. The slightest amount of stress can set me off and I feel like I just want to jump out of my skin. It used to get so bad, that I would have to take anti-anxiety medication for it...or drink lots of alcohol...or both. But I can't do that now. I have worked too hard to get myself healthy to be throwing all that junk in my body! So instead, I am resorting to every self-care and anxiety relieving technique I have ever learned. Surprising result: they work. The trick is to listen to your body, know when you need to step back and rebalance. Then figure out what works. For me, it usually means time alone at home, with low lights, candles going, no TV or excess stimulation at all. I take a hot shower and then surround myself with things I love (and that don't talk to me!) such as books, magazines, scented lotions, etc. It is about changing the environment.



My last hurdle to get over the prednisone wall is the crazy ass mood swings that it produces. I know this issue is not exclusive to me, but it can be a nightmare. It is also an issue that can settle down quite a bit after the first 72 hours, but then resurface the second the doctor decides to start weaning me off the medication. I am not talking the "weep a little while you watch Lifetime" mood swings. More like one minute I am having a very rational discussion with my boyfriend and the next minute, I am crying uncontrollably; for no reason. There is no rhyme or reason. It requires a lot of explaining on my part which is hard when I just want to curl up in a ball and cry. I am much more impatient and easy to anger. I can be difficult to be around which is now even harder because I am not living alone. In essence, I am not me. However I have found the best way to deal with this is to be upfront with people about the medication and keep myself out of situations that will get me into trouble, so to speak. If I am having a particularly difficult day with the crying, I just hole myself up in my house and let myself cry, instead of trying to fight it all day. Instead of struggling and feeling guilty, I stay home and take care of myself until I can get through to the other side. The other side does come.



These are all hurdles that one little tiny pill throws in front of me every time we get back together...the one that I love and I hate so much. I have discovered a lot about the ways I can climb the prednisone wall instead of giving up and just letting the medication control me. Hopefully this will be one step closer to ending the love-hate relationship I have with prednisone and the beginning of a more peaceful coexistence.





Author's Note: Please feel free to share your good and bad prednisone experiences below!






























Photo Courtesy of Google Images

8 comments:

  1. Thanks Chris - I'm going to share this with a few people in my life who unfortunately need prednisone too. I think they will appreciate it. Char

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  2. Prednisone... so many awful things can be said about it, however, it does make life a little better. I have MS and have to take prednisone during flares, or Solumedrol (which is basically the same thing just a bit stronger) You are not at all alone with the mood swings. I get them BAD... really bad... and weird cravings. Nothing gross weird, but random weird. Such as hot dogs and rootbeer floats... at 2am. !?!?!?! Or just a random craving of hotwings.

    I also get super shaky and can't sleep... but seems that is pretty normal. I hope that your dose isnt too bad or too long. :(

    Thank you so muc for your support on my most recent post. I think I am totally obsessing too much over the scale. You hit the nail on the head with your post below "Screw the scale" that is exactly how I am feeling!! It is like you typed out everything I am thinking and feeling now... but.. last month!! LOL

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  3. Yes...Prednisone, the drug everyone loves to hate! I have been on it two years now and I completely understand what you are going through. My best advice...be easy on yourself. And you are so right - the "other side" does come...eventually!!
    Be well my friend, and I sure hope this helps.

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  4. Trisha ~ It's 20mg until I see an ear, nose and throat doc and get my new hearing loss issues figured out. I don't usually do too bad with this dose but every time is different I guess. I really have to watch myself though with my eating. I have come way too far to mess it up now.

    Theresa ~ Thank you!! I hope it helps too. It has with the typical symptoms such as the asthma but not any help yet with the hearing. I have an appt. with the ear specialist next week so we will see!

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  5. I've been on prednisone for years (like 8). My docs have always kept me under 15 mg and keep it as low as possible to keep side effects away. I think being on it steadily keeps the really bad flares away. But when i was on the 15 mg, I did manage to gain 45 lbs so I totally relate. Thankfully, as the dose went down so did the weight. Taking it in the morning has been helpful for the insomnia. I'm so glad to know that the eating issues werent just me... it's like food on the brain 24/7!!

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  6. Anonymous ~ No kidding about the food on the brain! I tend to do better once I get down to 10mg which is what I just went down to this week thank god. Hopefully I will start to sleep better as well. I think it helps to keep the bad flares away too although I did go six months off prednisone with no flare using acupuncture and diet...hopefully I can do it again!

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  7. I have to say that I am just crazy psychotic while on prednisone. Besides the crazed food issue and lack of sleep, I work as a church secretary and after my last round of prednisone I cursed out my Pastor....yes I still have my job but have made the decision not to take prednisone as long as I can help it. Unfortunatly I can't take anti-inflamatories either.

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  8. Jackie ~ I have had some mood issues with it especially irritability and periods of depression. Usually it is when I am starting it or tapering off of it and it is also very dose dependent. The things we have to go through....

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