Yesterday, I started an update. This is the rest of it. So sorry for not updating all at once. Lately, I have found it hard enough to sometimes get through the day, let alone sit and blog about what is going on. I know it bores some people to pieces and even annoys others. Although I still find it difficult to sit and write, I still find it extremely therapeutic sometimes. So here goes...
 |
| My number 1! What would I ever do without him? |
During the long wait til the next trip back to the Rheumatologist (Well at least it seemed like forever), I tried to be as patient as possible and kept myself pretty busy. I enjoyed some time with family and friends. My daughter, Abigail came out for the weekend of my birthday, which turned out to be too short, but I loved every bit of it. She bought me a really nice Pandora bracelet for my birthday. I can't wait to fill it with the charms that represent my life. One weekend, I even spent it on the lake with Mike's cousin and his wife. I had a nice time. It wasn't too sunny and the lake was absolutely breathtaking. I sure wish that we lived on a lake like that. Maybe some day.
New symptoms
While waiting for my next appointment, I started to develop new symptoms. It was said all along that, untreated, I would start to get new symptoms of this disease and some would be unpleasant as the disease progresses. A couple weeks ago, I started to get really red and hot ears and face. At first, I was assuming that they were like that from hot flashes, but I found out that is not the case. It's just part of the disease, unfortunately. One thing I did notice, it the start of the Heliotrope on my eyes. That's the purplish marks on my eyelids. That is one of the biggest telltale signs of DM. My hands continue to get redder and redder. The Gottron's Pappules have increased and Mechanic's hands are becoming more and more pronounced. The worse part is the arm and hand pain. This most recent trip to the doctors, a few tests were done and it has been determined that I have carpel tunnel syndrome, more than likely a cause of DM.Treatment Finally Begins!
October 15th, 2015 - The day I was supposed to go to the Rheumatologist and get the intended medications for treatment: Prednizone, Methotrexate, and possibly Imuran. I get to the doctors and go through the long, drawn-out process of giving the "Fellow" on staff the low down and new symptoms. Dr. Mosely comes in and does her usual thing where she brings other interns and fellows in because it is not every day they see a patient with this rare of a disease. She finally explains to me that unfortunately, I need a special Chemo to tackle this disease. Yep, Chemo...as in Chemotherapy.
She explained to me that the blood work had changed since my last visit (ANA had changed from 1:80 to 1:320 and other antibodies of DM were detected) and since the new symptoms have appeared, I would need treatment with a Chemo drug called Rituximab. It is a chemotherapy that treats minor cancers, Lymphoma, and many serious autoimmune diseases, such as DM, Polymyositis, Lupus, and Rheumatoid Arthritis. Treatment starts on the 22nd. I will be going once a week for 4 weeks and then monthly after that. Each infusion will take roughly 4 or so hours. I am told that there are minimal side affects, but it will make be very tired the day of the treatments. I was also told that I probably will not lose my hair and probably will not have days of sickness afterward...just fatigue, but what's new, Ha?!
So there you have it! You now know where I am at as far as the treatment and what is next. I will try to blog next week, but I can't guarantee I will be able to endure staying awake. See you all then! Hugs!
No comments:
Post a Comment