Weeks 16 & 17-1/2 - Post Lemtrada
February 20, 2020
It's been over two weeks since I posted last, sorry about that. It's been a busy month. Two sets of visitors visiting us and my family went out of town for the long Presidents weekend. We drove but it's the first time I've traveled anywhere since my Lemtrada. It was good to get away even if it was only for four days.
I haven't gotten back in the habit of writing notes to myself each day so I've been trying to think back to how I've been feeling over the last couple weeks. Like I mentioned before, the good thing about being busy is that it gets you out of your head and your concentration off how you are feeling. My legs are still a little 'bouncy' and really more like a little unsteady first thing in the morning; I feel like that has gotten more mild and leveled off at a mild level. My fingertip numbness is also maybe a little better but not much. My energy level seems to have leveled off and I was wondering if the DHEA is helping then I remembered I had a 1,000 mg infusion of Solu-Medrol (steroids) last week so that's probably the answer there. I had a little bit of trouble falling asleep the first two nights after the infusion but I was fine after that. I haven't had the super good mood spike like I did after 5 days of Solu-Medrol with my Lemtrada but I haven't had any bouts of exhaustion this week either. I think the DHEA might be helping too; I did notice a little bit more stamina even before I had the infusion. My mental clarity has improved a little bit but for the most part I feel like I am floating from task to task or bumping into the next thing I need to do. I really don't feel "all there" most of the time.
The issue of mental clarity has been bothering me. I had a yoga teacher training session scheduled for March, it is an intense all day for 11 days schedule and I was worried about how my lack of concentration was going to interfere. I was trying to get a start on reading one of the books while we were out of town and was having a hard time with that. Unfortunately but also fortunately, it was rescheduled for the end of September. Hopefully, all my brain cells are back to working together by then.
I got a call from one of my Neurology doctors on Friday last week asking if I had done the steroid infusion; I had just done it on Tuesday. He said that it appeared it was going to be difficult to get the insurance to approve the Rituxan so they felt the steroids would be enough and they also didn't want to take my immune system down too low by doing the Rituxan on top of it. I said 'ok' and let him know that I was due for my monthly labs next week (this week). I did my blood draw on Tuesday and got the rest of the results today. Everything that should be in range, is in range. On my Lymphocyte subset where they look at my T & B-cells separately, there was a note that since I started with the steroids, my doctor felt that I should keep that protocol (instead of Rituxan) as mitigation for possible secondary autoimmune issues and may need to redo the steroid infusion in 2-3 months depending on my labs. I am completely confused because my B-cells did not go down; they actually went up a little. Maybe it takes a little time but the nurse at the infusion center told me that my immune system would be lowered for the following 48 hours and my blood draw was a week after my infusion. I did send a note to the doctor asking about that.
I will wait to see what the doctor says first before I go full roid rage on the insurance company but I am already right there. If I develop a secondary autoimmune disease, I am fully prepared to sue my insurance company, the person at the insurance company who reviewed my case and the drug manufacturer who makes Lemtrada. The insurance company for not listening to my doctor and putting my life at risk and the drug manufacturer for not releasing all the clinical data which shows a link between secondary autoimmune issues and the T&B-cell differential. I think my immense displeasure of this situation is pretty clear.
On a happier note, I have been getting out more and getting back to regular life. I went to my son's HS musical and my daughter's orchestra performance. I am still nervous about being out too much but it makes me feel better at the same time that I am not missing out.
I think I hit all the major events of the last two weeks and this is a long enough post already; I will wrap it up here.
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