Artist: Rose Kelly Source: Denver Doc Online - see link below

Two weeks ago I had a most humbling experience, I had to go without prednisone for four days. It was not cute. What made this a humbling experience was knowing my adrenals had been shut down so long my body didn’t know itself.

Why did I end up in this predicament? Well, it was a comedy of errors. First, I meant to (and actually thought I had) call in to the pharmacy to order my prednisone. I forgot. On Monday, I tried to call in to order my meds and could not get through. Didn’t know why I couldn’t, just couldn’t. Because I had one pill left, I thought I would just walk in or call in on Tuesday. Surprise, I could not. The reason why I could not call in the day prior had a lot to do with their system being down. When I called on Tuesday, I was met with the same problem. When I walked in I learned their system was down and I could not get the medication.

To add insult to injury, when the system came up they would have to call my doctor for a new prescription. Oh joy, oh rapture and that too proved to be another comedy of errors. Bottom line, I could not fill the prescription until early Friday morning, just prior to my chemo treatment, and that created another set of problems for me that weekend.

My last dose of prednisone was noon on Monday. My first dose after going without took place at 9:00 a.m. Friday. What happened in between those days was absolute hell.

The first day without prednisone I experienced flu-like symptoms, I was weak, tired and achy all over. The second day (Wednesday) I was in excruciating pain and extreme fatigue. I couldn’t think very well either. On Thursday, even more pain and more fatigue. I will say this though, I slept very well those few days though I felt like crap. I also dropped some weight.

Prednisone is a hateful drug. Not only does it plump you up like those steroid chickens we eat these days, it also shuts down your adrenals. Once off the stuff your adrenals will not take over as quickly as you would like. In fact, mine didn’t appear to do anything. I looked and felt like the living dead.

There are videos on YouTube of Michael Jackson’s 30th Anniversary Concert. In those videos I can see MJ is pretty plumped up — I’m thinking from the prednisone — and he has what we call a “preddy tummy”, strangely large around the mid-section. If that man dropped prednisone because he was concerned about his weight, oh my God what manner of mess did he invite for himself? After what I experienced last week, oh heck yeah I too would have become a drug addict. I get it, I really get it.

I am not an entertainer and I am not — at my age anyway — concerned about weight gain or loss. I knew my prednisone was forthcoming and my bad experiences would be short lived. However, if I was concerned about those things I can see and understand the temptation to drop prednisone and self medicate. I get that, I really do.

Without the prednisone I was tempted to go back to a way of life I once lead, coffee (or sodas) all day to combat fatigue, high doses of ibuprofen for pain and melatonin or valerian at night to sleep. This was my life pre-diagnosis. After I was diagnosed with lupus I understood why I experienced the extremes, pain, fatigue and after all of those uppers (sodas or coffee), needing something to help me sleep. Quite frankly, it’s easy to find doctors who will give you pain meds without question and I had a ready supply of high-dose ibuprofen — or anything else I might have wanted.

Thankfully, I did not fall to temptation though I certainly thought about it. Dropping the prednisone was cruel, painful and perhaps one of the worse experiences of my life. Now, back to my 10mg tablets, I feel so much better but I cannot help but think about what my body endured those day without it. I took no stimulants, no pain meds, and I wanted to fall into a hole and die. It was harsh.

I believe everything happens for a reason and I needed to experience what I did that week. The comedy of errors helped me understand why dropping prednisone is not a good idea. Second, it helped me understand why those who do drop the medication may feel compelled to self medicate thinking going without is a better way to go. Unfortunately, it can cause even greater harm to your body. In my case, protein went up instead of down. Not good.

Bottom line, DO NOT DROP PREDNISONE!!! Talk to your doctor and — depending on how long you’ve been on the drug — taper off. When you taper off do not self medicate, that too can take you down another horrible road.

What a humbling experience, one I will not soon forget.

Image Source: Denver Doc Online