CIDP and Me - Antibodies VS Antibodies....

I had a pretty crappy week. What a way to open a post, I know! But it's true. Remember 'the ugly' section of my last post? (Yes, I'm now assuming background reading...) I'll recap if you missed it. I have been having allergic reactions to my IVIG treatments periodically since March. Last month I had one despite a high dose of Prednisone, which was worrying as it is supposed to shut down the immune system enough to prevent reactions (along with other precautionary drugs and measures). Well, we changed brands (for the third time) this time around and I was hopeful. Alas, I had two reactions this week and have been told that IVIG is no longer a treatment option for me. My neurologist is worried about my kidneys - they are OK right now, but apparently it is a bit of a ticking time bomb if we continue. So, this sucks. IVIG, while no picnic, has played a big part in getting me where I am today. It is the first-line treatment for CIDP and has the fewest side effects. I had it every 2 weeks for a year and a half and then every 3 or 4 weeks for several months with no issues and figured that would continue indefinitely. It seems my body has other plans.

Basically what they think has happened is that over time my immune system (not my favourite part of me) has developed antibodies to fight the antibodies from IVIG. Well, I guess my arsenal is big enough now to launch counter attacks... At first Prednisone and Reactine/Benadryl were enough to stop the attack, but diplomacy has failed and war has been waged. I was pretty down on Wednesday when I had my second reaction in a week (first time that has happened). But such is life. There are other treatments and this does not take away from any of the awesome physical improvements I've made lately.

There are other options and no one has given up on me. My neurologist is going to discuss my case with a hemotologist in Halifax and we will go from there. For now I'll stick with Prednisone and hope it's enough to keep things in check. I should know more over the next few weeks. I keep telling myself that it took a long time to wind up in the chair the first time, I'm not going to end up back there again overnight. I was able to space out my IVIG infusions from every 2 to every 4 weeks without major issues, which is also hopeful.

I allowed myself a rare pity party for a couple days but have decided enough is enough of that. Today we (Scott, my mother in law, Barney, and I ) got in the car and drove out to Louisbourg for the afternoon. Nothing beats a little fresh air and the ocean to improve my mood. I was even able to *hike* a little bit! Well, I took my walker and walked down the first few hundred feet of the well-groomed Lighthouse Trail. It was a really great day and a good boost for my ego. I found it easier than I expected to get around and, though I was tired, I didn't overdo it. Two years ago this week I heard about CIDP for the first time. A year ago I was happy that I could almost get up from my wheelchair unassisted, now I can walk a level gravel path by the ocean - not bad at all!

Here are some pics from our outing:

Ciao for now!