Well, I realize that my last blog entry was April 8th-ish, but to be quite honest these last couple of months have been the worst of my life..and I don't like to complain, so it just wasn't worth writing about. But now, I have a little good news and thought I would share!
Since March when I headed out to New Mexico to Dr. Berkson, I have experienced almost every symptom imaginable (it seems). My lab values have been all over the place and have had many doctors appointments and tests from my team here in Fayetteville. Some days I felt like I just wanted to crawl under a rock (but was too sore the think much further).
Apparently, these symptoms were part of my withdrawal from the prednisone and everything else I have been on in the past and my body was just plain angry. Still, I have been trying to keep to "the plan" of getting off all my traditional meds and just maintaining the Low Dose Naltrexone and the Alpha Lipoic Acid infusions (4 every other week). While on low dose Naltrexone you can not take ANY pain killers with codeine or narcotics, so even on my worst days...I just had to tough it out. I really began to think it was never going to work and thought many times about pursuing another biologic agent (drugs that I have been on before that are toxic to your body and given via IV or self injectable). ALL of them come with black box warnings to include dementia, cancer and other awful "side effects"
My lowest point was over 4th of July when I went to my parents house for the holiday. My parents couldn't believe what little mobility I had (specifically with stairs and getting up and down out of chairs). I went out to New Mexico on 40mgs of prednisone a day and over the 4th I had weaned myself down to 4mgs a day...but at a cost (not be able to move). My dad suggested a round of steroid shots in a couple of larger joints to see if it would help me achieve some temporary (and maybe even more long term) relief. He injected my left knee and right wrist. I had a Bakers Cyst in the back of my left knee he aspirated and then injected the knee with kenelog. I could not close my hands in a fist and the closest I could come was making a "C" with both hands...so he injected my right wrist on both sides. I limped out of the office and rested the rest of the day.
The next day, I was like a new person! I could walk, do stairs, make a fist with ease!!!! I was so excited to have somewhat of a life back. I knew that this was temporary, but I was going to take it after the 4 months I had experienced.
Well, as expected I started to feel a little sore 10 days later and had one kinda bad day, but then it stopped. I have hit a plateau and think that the LDN (low dose naltrexone and ALA) are finally doing their thing. I strive for much better inflammation control, but it is MUCH better than before. My rheumy's office called today and reported that my white cell count is finally close to normal 11,500ish. I have been around 18,000-19,000 for 4 months. I don't feel like i have an infection of any sort...it was just inflammation. I am hoping that this lab value correlates to how I am feeling and will continue to go down along with my inflammation. I am still humbled by the fact that i struggle with such simple tasks that I used to perform with ease, but feel blessed to be able to just function in a reasonable state. I am trying to take it easy on my body and continue to let the healing process take place.
I am heading out to New Mexico for my next check up in mid August to see if Dr. B has any other suggestions to further reduce my inflammation.
So many of you have asked about me and how I am feeling and I wanted to make sure that i updated those of you who have been interested in my progress. I praise God for the relief He has given me through this treatment and pray that He will only continue to heal my body. Your prayers have encouraged me and supported me throughout these last few months. I cling to the fact that wherever I go from here is His Divine Plan for me and that He gives me the strength to put one foot in front of the other every day(healthy or not). May His Glory be shown through trials we face and may He use me through mine!
Oh...by the way...I am now on 3mgs of prednisone a day (not to mention 25lbs lighter than March)....WHOO HOO!