First, let me thank everyone who has been following this blog and writing to ask questions and give your own stories. Second, let me apologize for not being more diligent about keeping my blog updated. I have been doing a lot of soul searching this past year trying to figure out what this blog is really for and where I’m going with my disease and life. This past year starting in about March 2017 I got really ill and my disease took over in ways I was not expecting. I was having difficulty with my hands and feet and just overall fatigue. I was still working fulltime, exercising every day, teach yoga, eating has clean as I could, taking my medications and sleeping as much as my body would allow, but I was just not feeling well. I started a new medication last year that didn’t really help all that much and just found that I was dealing with brain fog almost every day.
I was diagnosed with Lupus this past and scleroderma. Both of which has caused a bit of fear in my life but I also knew in the back of my mind that it is really rare to stay in the category of MCTD forever. My internal organs have not been affected so I feel very grateful for that and will continue to do all I can to keep the disease managed as much as possible. The scleroderma is contained in my hands, especially fingers, and toes. Again keeping this contained to digits is far better than dealing with internal organ issues so I in no want to complain. Very recently they have come out with a new FDA approved medication for Lupus which is a self-injection. This injection is done at home that I give to myself once a week. I have only had 1 injection and figured now would be a good time to start journaling about this new experience and development in my disease.
I went to the doctor office and had the nurse help me with my first one. I practiced on a dummy thigh for a few times and then felt comfortable enough to give it to myself. My first attempt was not hard enough so nothing happened but then 2nd time I gave it a little more pressure, felt the prick and could feel a bit of warmth as the medicine rushed into my leg. It didn’t hurt at all and had no side effects. They had me wait about 10 minutes just to make sure everything was ok and I felt well enough to go back to work. She did say that I might wake up with flu like symptoms but I was not contagious to anyone.
I woke up Thursday feeling fine, no flu, no symptoms to worry about and headed to work. She also mentioned I would get bruising but I did not. It was Friday morning however, when I woke up with a fever and the flu. It was miserable, but I also figured that if I’m going to be doing this every week I was going to have to figure out how to deal with. I didn’t work out that morning and came to work with some ginger ale. I had a meeting first thing so my brain was foggy as I was not feeling well, but by noon that day it had subsided and I was back to normal. All this is normal and I’m hoping that after a few more injections my body will be able to adapt without these symptoms.
I will have my 2nd injection this week and will write about that experience. It is way too soon to know if it is working but the idea is that since people with Lupus have certain white blood cells called autoreactive B cells stay in the body longer than they should, using a biologic injection binds to these cells and reduces the abnormal immune system activity.
By starting this medication I was able to stop another medication, but still will use my core group of medicines that I have used for the last 15 years I don’t know how long it will take to notice any change or positive effect but I’m guessing it should show up in my blood work in a few weeks. I will have a follow up and will be able to have a better gauge at that point. Until then I am being very strict with my eating, keeping it clean and consuming zero alcohol as to stress out my body any more than absolutely necessary. I’m really working on adding sleep and trying to incorporate 9 hours each night to allow for adequate healing time in the sleeping hours, I’m just walking, doing yoga, and using bands for weight training as to not fatigue the body to much, and meditating every day without fail to give my brain and body a few moments of peace, calm and silence. Will any of this work? I have no idea but it certainly cannot hurt to try.