Rheumatologist appointment today.
It wasn't an amazing appointment, but not exactly bad either.
I explained that my first dose of Cimzia wasn't great. There was some instant throat tightening, and although it did not progress to a full blown attack affecting my breathing, it also did not fully resolve for two weeks.
So I could maybe look at doing the smallest dose possible once a month instead of twice a month. And even then, it's pretty frightening.
But, I don't have any other options at the moment.
So we are going to try again, with an added regimen like the one I had when taking Remicade.
For this next Cimzia injection (which I may wait until January to do just in case it might screw up the holidays) I will be taking a 50mg dose of Prednisone, a 50mg dose of Benadryl, and a 2-5mg dose of Diazepam directly before injecting the Cimzia. This is intended to reduce the allergic reaction. Oh and I am also supposed to do this on the best day in regards to my Hereditary Angioedema, because Biologics are now known for triggering C1 Esterase Inhibitor Deficiency attacks.
On one hand, I'm sure others are even wondering, is this even worth it? All of the extra medication and the allergic reactions and the potential for throat swelling and even obstruction being so high? Really? This is big and scary and can even be traumatizing (more to the person who is with me because that Prednisone dose makes me go full-out roid-rage every single time).
But here's the thing:
This disease is bigger and scarier.
Just seeing and speaking with others suffering from this disease, I have seen the scars from hip replacement surgeries while they were in their 20s. I have seen the deformities and the spinal curvature and I have seen people trying to move and walk. I have seen my likely future and it looks damn scary and damn painful.
Plus, when I think back to when I had this regimen to be on Remicade, the Remicade helped for 3 years before my body finally said 'enough'. When I was on Remicade for 3 years, I was well enough to go traveling all around Europe for a few weeks at a time. I finished University, I released a cd, I wrote a thesis, I traveled, I was able to move out on my own, I was even more active and able to go backpacking by myself.
So if a big dose of Prednisone and a big dose of Benadryl is going to allow me to try another Biologic a few more times, to maybe help slow down this disease, I guess I am just going to have to try it.
Jussssst word to the wise, on injection day and a few days afterwards, it might be a good idea to avoid too much contact with me. I am usually very aware of my steroid mood swings, but they are not always totally controllable. Playing Boggle with me during this time might be a good idea. It always makes me feel better.
So here we go. (Well... in January). Another couple doses of Cimzia coming up.
