The fog has finally cleared

I can think. It feels wonderful to just be able to write that sentence and actually mean it. And even though it was only twenty or so days since my last post so much has happened! A week after my last update I had an appointment with my immunologist, there was a cancellation and thankfully we managed to get in. We talked over all my side effects and how the prednisone seemed to not be making much effect and where to go from there. The reason I was still experiencing such fatigue was from steroid induced muscle atrophy, and that was putting strain on my joints. So while we we’re trying to fight the joint pain caused from the anti-ku antibodies with steroids, it was causing even more. Then there was the weight loss from my lack of appetite, it wasn’t too significant but enough to be a little concerned for. The numbness on my face he put down to the steroids, but he wasn’t too sure. My racing heart and hand tremors he could be sure were the steroids. So the final verdict was to lower the prednisone to 37.5mg and what a difference it has made!

Within a week I could feel myself being able to think. Looking back now I don’t know how I survived those 5 weeks on 50mg. While I remember what was going on, it all seems a little hazy and like it was a dream and everything was fast-forwarded. And that probably sounds crazy, because it sounds crazy to me, but that’s the best way of describing it.

Now that the prednisone dose is reduced we have to try something else. I was still on methotrexate, at 10mg, but now we are bring that up to 15mg. This is the one that I take once a week because it interferes with the production and maintenance of DNA in your body. In simple terms, you accidently take too much, your body shuts downs. This is why I’ve written on the bottle “ONLY TAKE ONCE A WEEK” just incase I forget. The goal is to try and get my body to stop producing the antibodies by forcing it into a remission with the methotrexate. The downside is that because it’s a chemo drug I get some pretty nasty side effects: fatigue (extreme fatigue), nausea, upset stomach, headaches, they call it The Methotrexate Hangover, and this can be for two days after taking it. But if it works and we can get me on a lower dose of prednisone then I think I can handle it.

As for my chiari, that’s actually been doing okay! We changed my medication around for it at the same time we started the prednisone and methotrexate, so it’s been no surprise as to why my body went into a complete meltdown. But it seems to be working. I’m now on Topamax and Amitriptyline, and I only have to take pain relief on Fridays, which are the days after I take methotrexate.


I’m not sure how long I’ll be on all these medications; your guess is as good as mine. It might be months, years, or the rest of my life. I just don’t know. Here’s what I do know, I got through 5 weeks of hell. I experienced sleepless nights where my heart beat at over 120bpm, where I felt anxiety for the first time in my life, where I was so confused I could hardly speak and I was so tired I couldn’t dress myself. But I got through with the help of the people around me, and I don’t know what will happen at the next appointment on Monday, but I do know that I can get through it.

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