I really wish I would use this blog for an outlet more often, but I haven't. Maybe some day I will remember that I can post this stuff and free it from my brain. So here is the update...
I had my infusion in July with no signs of improvement. I went through summer fighting my lupus, watching everything that I did and taking every step with caution.
I met with my doctor in August and she said that because it took 3-4 infusions for it to start working I should wait until I have been back on it for the full four infusions... this was an overwhelming thought since I was a week away from number 2. She did show me my chart and the amazing progress I had made while on benlysta and to just hang in there. So I did.
September is usually a pretty stressful month for me, I have WAY too much going on in my life, and this year with the Benlysta not yet working in hit me hard. I struggled all month with painful days after painful days. Getting home to medicate myself couldn't come fast enough. I remember a recent Sunday when I was at church and I had three friends tell me I looked amazing and I must be feeling good, what I didn't share with them was no, this was an act and apparently I was acting too good so I needed to tone it down so no one would ask if I was really doing ok.
September may have been the worst Lupus symptoms I have had in a LONG time. But on last week I got the fourth infusion... I wasn't too optimistic that it would start working but as of yesterday I can say without a doubt that it has kicked in. I NEVER want to end the infusions, I NEVER want to go back to feeling the way I did. I am so thankful that it is actually working.
Don't get me wrong, I am going to take it easy the next few weeks just to make sure.
On another note... I decided at the begining of September to go gluten free for two reasons. One, a few years ago my Rhuemy asked me to just to see if it would work. I didn't have the motivation then or the willingness to try new things and two, I can't loose weight for anything. The first week I had a bad headache but for the most part it's been pretty easy. It's been 6 weeks and I am told it can take 6-8 weeks to see a difference, I know it will be hard to tell since benlysta was started back up but I will just wait and see.
I will keep you posted!
