RA created a desperate situation. Joint pain, stiffness, and swelling are at high levels. You know it’s bad when one can notice swelling in a skinny knee (just ask my wife about my bird legs). My rheumatologist commented the other day, “your hands feel hot today” intimating that inflammation was busy at work. Energy levels are such that simple daily tasks like cooking dinner are difficult. Cognitive functioning is so impaired that tackling issues at work and home are close to impossible (missed work…that’s another issue for another day). Systemic inflammation seems to running rampant – a recent C-reactive protein test was near an all- time high for me at 1.6 mg/dl and it’s been this high for the past four months. Tweaks to long term treatments are yet to show an impact.
It’s hard to believe but I actually asked my rheumatologist for steroids in an effort to knocks things down a notch. If you’ve read this blog over the past few years, you know that I’m not a big fan of corticosteroids (see earlier posts on Prednisone Side Effects, Love/Hate relationship, and my first post on the subject where I compared them to Nuclear Weapons). A stash of prednisone pills sits in my bin of prescriptions but it is avoided like the plague as the side effects often feel worse than the RA. My rheumy recommended something different and I agreed to try a Medrol Dose Pack which contains a batch of 4mg methylprednisolone pills titrated down over a period of days (see photo). I only had one experience with this approach back in 2008 when first diagnosed. These dose packs are used to treat a variety of inflammatory conditions (see package insert).
The first day brought a welcome burst of energy, much lower joint pain, an ability to focus, and the recurring headaches disappeared. It felt wonderful. Then it came time to sleep and it was clear that wasn’t going to be easy as my body and mind were both hyped up. An Ambien (zolpidem) sleeping pill was used to help which it did. Day two didn’t bring the same levels of energy and joint relief and I collapsed in a puddle left wondering if it was worth it. The next few days will serve as an experiment to see if rampant inflammation from the RA can be wrestled into submission by this powerful drug. If not, I’ll just have to wait to see if long term treatments will start working. After being through so many treatments over the past few years, my rheumy actually used the term “refractory RA” with me the other day which doesn’t engender much hope. In the meantime, I’ll seek any relief from any front including the corticosteroids I love to hate.