12K STEPS CHALLENGE DAY 17

  This month the FDA approved a new drug to help with Lupus called Benlysta. I have attached the FDA website here for further information if you are interested. http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm246489.htm

This is the first new drug to come on the market in 56 years. Interestingly enough the last drug to be approved for Lupus was Plaquenil which is probably the most prescribed medication in cases like Lupus and MCTD. Of course along with this new drug come all the possible side effects which are to be expected but I’m just glad they are still working on new treatments, medications and therapies. My hope has always been to have cure in my life time. I have an incredibly long life line in my genes if my disease stays at bay and doesn’t progress to my internal organs or the medications I take don’t where down my system. I’m also hopefully that if a cure is not found a therapy of some sort for remission will be found and that I can hope for sooner rather than later because I believe with the genius minds out there they are already working on it.

Medicine has come such a long way in a relatively short time period time. This gives me great hope for more successes in the realm of autoimmune diseases and what it means to people like me. I must admitted I’m a little leery of an intravenous transfusion but if my doctor sat me down and honestly thought this would help me I would have no choice but to consider it. I have said “no” to many doctors in the past but I have only said no to my trusted Rheumatologist twice in 7 years. The first time was when we talked about just upping my prednisone every time I felt a flare-up coming on. I didn’t and I don’t feel comfortable with that since my body and psyche go into distress mode at higher levels and I have worked so hard to get down to 5mg and although I have not been to go below 5mg I feel like I can manage 5mg. I’ll be at 5mg again very soon this round too.

The next time was recently, this past Christmas season to be exact. I didn’t actually say no but he thought it would be a good idea for me to increase my procardia to 60mg from 30mg to help with severe Raynaud’s. I said I would try it and if I had any swelling in my ankles and feet I would stop and go back to 30mg. If I can’t get my sneakers on or even walk comfortably that is worse for my psyche then racing hearts, hot flashes, irritability and vicious mood swings. Sure enough it took 2 doses to figure out that wouldn’t happen. I decreased immediately and went along time with very manageable Raynaud’s. When I was in his office yesterday he looked at my extremely purple hands and said you are still at an extreme level. I think he was thinking with the prednisone and getting rid of the rash that the severity would go away as well. He didn’t mention making any changes just said we would keep a close eye on it. Fair enough, I’ll keep a close eye on it especially since it is staring me and everyone else I come in contact with right in the face. There isn’t a real good way to hide purple hands.

I had a great work out in the morning and didn’t have any appointments so I got a killer work out at lunch time and I logged 16,987 steps for the day. Another successful challenge day. To treat myself I finished my day doing hot vinyasa and I must admit it was a challenge. I have lost so much upper body strength recently that doing poses like downward facing dog and other poses that require wrist, arm and shoulder strength were very difficult. In time I’ll gain that back too. I focused more on the quiet and heat and did a lot of resting in child’s pose.

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