A funny thing happened, well only funny now in hindsight. My dermatologist immediately in January said we were going to hit the pemphigus aggressively with another treatment of Rituxan. The paperwork went through, blood work, but my insurance denied it.
My rheumatologist said the treatment would take care of all the pain I’ve been experiencing, so I got a new insurance and was practically dancing in the streets. I went back to my dermatologist for another blood test this past Tuesday, instead of a blood test he just said it was off, no treatment. It was just too aggressive.
I think I took it as well as anyone would have taken it who has gone through pain for years on end, almost seven years for me, only to be told that this was the year that everything would be gone with one more treatment. Only to find out, it wasn’t going to happen, he wasn’t even going to try.
I cried for hours.
I had never been so close to a breakthrough and I had never believed it so much. Sure, doctors have been telling me for ages they’ve got it all figured out and it was going to be better, but this time, I believed them.
His reaction was strange to me and when I tried to tell him how bad the pain was, he just blew me off and went to the next patient. It wasn’t his problem after all. I did a lot more research on Rituxan when I got home, I know that the treatment is dangerous. Whenever death is listed as a “side effect” you know you’re dealing with something serious.
The first time I got the treatment was the end of 2013, I had two treatments of it and was able to come off the immunosuppressants. I was scared of it, of course. A patient before me had just died from it, but I was so desperate to beat the pemphigus that I clung to my hope in God and went through with it anyway. After that, my body was extremely weak and I didn’t put two and two together at the time, but when I went back to work in 2014 the pain went into overdrive and it ended with me hardly being able to walk.
The more I looked around and saw how other people with pemphigus reacted to the Rituxan, I realized a lot of us ended up with myalgia. It’s not listed in one of the side effects, and it could be just because of the pemphigus and Rituxan mixing, I don’t know. I’m definitely not a doctor, but I think this is something serious that anyone looking at the Rituxan (Rituximab) treatment should definitely be aware of.
The moral of the story:
It is better to take refuge in the Lord
than to trust in humans. Psalm 118:8 (NIV)
People will let you down, it’s bound to happen. They’re only human after all. Being in pain for this long of a time, I’ve seen the cycle repeated time and time again. It hurt especially coming from my dermatologist because I’ve been going to him for at least 3 years.
I can tell you that through it all God has always been there for me. Every major breakthrough in my illness had the handprint of God on it, there was never any medication or treatment that saved my life, whenever my life had been in danger from this disease I took refuge in God, the one who created me.
I’m still not sure where to go from here, I’ve been working harder than ever at my physical therapy. I’ve researched food that contain natural pain relievers and I’ve told myself daily, it’s going to be okay.
Yeah, I’m not going to be perfectly well like I thought I would be. But I can still better myself, I can make my body stronger and one day maybe the pain will be gone for good. For now, I’m just happy for another day to try.