The Prednisone Diaries

Me, the entire time I was on this drug. Only I didn't have the fat.

Prednisone is a steroid. You may be familiar with it if you have asthma, allergies, ear infections, etc., but I guarantee you've only had the smaller daily dose packs. I had five days of 100mg through IV, and then I started a 12 day oral taper - 2 60mg doses, 2 50mg doses, 2 40mg, etc. It effectively cleared the swelling and fluid on my optic nerve, and the near total blindness in my right eye is slowly, slowly improving. I can now see movement and count fingers, but still can't see screens/books/faces clearly or read, and there's still one spot that is totally blind in the center of my vision. Comparatively from where I was at when I was admitted to the hospital, I'm okay with this. Partial blindness has only restricted me very little, because my champ of a left eye decided to regain 20/20 vision when the right went out. I just can't do stairs, my depth perception is screwed, and I can't drive. My neuro-opthamologist is confident, however, that I can regain 80-90% of my normal vision, with a chance of a possible complete recovery. It just takes time, as once the nerve begins to heal, vision itself is delayed by a week or so. Something something eyeball magic.

My IV injections of the prednisone never really caused any immediate horrible side effects that I noticed, or maybe the steroids just had to build up in my body first. Sleep was the first big disruption. When I could get it, I would wake up within hours of falling asleep wide awake, and sometimes panicked. Then came the hot flashes. Now this is a typical woman thing later in life, but I can honestly say at 26 I'd never experienced this before so I really didn't understand what was happening. I just thought the temperature in my hospital room fluctuated a lot. Then my blood pressure began to climb to pretty high levels. When I went home I was on the third day of my oral taper; my doc prescribed a very small dose of a diuretic to help keep it under control, and wrote a referral to a nephrologist to see if we couldn't investigate the cause (I've always had readings that some docs and nurses consider "a little high" when it came to BP). That night I slept rough again, but when I woke up the next morning I felt fine. I felt great. I wanted to try and get out of the house a little, after being cooped up in the hospital and mostly in bed for over a week. And then I took that day's dose of prednisone and my other medications.

Day 4 of the oral taper is when it began hitting me, full tilt. Hard. Things went rapidly downhill after I took my medication that morning, and after that every day on the steroids was a total challenge. I battled nausea and other stomach pain, which made eating difficult. I made it three full days at home before returning to the ER on the fourth, tachycardic, panicked, and with a high blood pressure that was not being managed. The steroids had increased my anxiety - it felt like I'd consumed about 10 cups of coffee, all the time - and I'd begun having panic attacks in my sleep, which would wake me up in a panic, and the vicious cycle never stopped. The ER doctor gave me an IV dose of Valium and sent me home with a low dose of a beta blocker to help the anxiety. While this cured my physical symptoms, it did nothing for the root cause, and by Sunday I was calling my regular doctor to go back in for another medication readjustment. From then on, the new medication and the decreasing doses helped the severity of the side effects, but I can safely say I do not enjoy steroids and I was never happier than the day I took my last dose. In fact, we went out for dinner that night to Koi. I had a waygu steak and it was glorious (my stomach didn't like it so much the next day, but I was sort of okay with the trade off).

Now that I've been off of the steroids for a glorious six days, my BP is finally coming back under control and I've come off of most of the medication I was on to keep it managed. I haven't had anymore tachycardic episodes either, and my hot flashes are gone. My sleep patterns are finally starting to return to semi-normal, in that I can at least sleep a solid amount, not wake up panicked, and still feel refreshed. I'm still battling a bit of daytime fatigue, though whether that's from the MS or from the massive amount of medications I've been on through this is anyone's guess. It probably also has a lot to do with not sleeping well for a good while. My anxiety is greatly improved, and if I do feel panicked, I can usually manage it before it gets out of control, but I've had less and less of those episodes daily - some days, not at all.

Another weird mental side effect of all of this was the total disconnect I suddenly felt from my own body. It was horrible feeling like I wasn't in charge of any of it, and like a totally different person. A positive side effect was that by the time I'd come off of the steroids, I'd lost 20lbs from where I was when I went into the hospital. That much weight loss that rapidly, and all of the other fun things that came along with the medicines, made me feel like a stranger in my own skin. Not to mention being diagnosed with a disease that is both unknown in cause and has no cure. I asked the doctor after being diagnosed, before I truly understood what MS was, if I had caused this in some way. He reassured me that lifestyle wasn't the cause, but that didn't help the feeling that I had, in some way, done this to myself. Then I began questioning why my body hated me so much. I've had a lot of back and forth in coming to terms with this, and I'm not sure I'm even quite there yet, but I'm better now. So much better. I feel more like myself, I feel relatively healthier, I feel more like a functional human being.

It helps that yesterday I overcame another big hurdle on my MS journey. My doctor and I had a long discussion when I was in the hospital about the various disease-modifying treatments available to help in reducing relapses. We decided that Gilenya (Fingolimod) was the right way to go. Unlike some MS treatments, it's a once daily oral pill. A lot of others are injections, or had side effects that I didn't like the idea of. Gilenya has a high success rate in dropping MS relapses by half, and from what I've been reading on it from people who take it, many have had few, if any relapses since beginning it. I'm optimistic that on it, I will be able to continue carrying on just like I did before we discovered this. The big hurdle I'm referring to is that Gilenya causes a decrease in heart rate in some people, so after taking the first dose, you have to be on a heart monitor for six hours to make sure that it doesn't drop dangerously low. I took my first dose yesterday and passed with flying colors - my heart rate never dropped below 70, and the EKG I had afterwards showed that my heart is in great condition, which means that I can now continue on my own.

So now I'm on the right track. My medications are all in order and I've got a great team of doctors behind me that I feel totally confident in. I couldn't ask for a better situation, and I'm counting my blessings that things are finally beginning to go smoothly. I'd like to take a moment here to thank everyone for the messages, good wishes, thoughts, and prayers that have been directed my way over the past couple of weeks. I can't tell you how much it all meant to me, and how much all of the funny pet videos helped me get through even the very worst of days. It kept me laughing and smiling no matter how bad I felt. You've all contributed, in no small way, in getting me here to where I am today, comfortable and healthy enough to write this blog to finally shed some light on what's been going on. I love you all.