Miss Understood: Running Out of Options

Miss Understood: Running Out of Options

I’ve learned with my conditions that the number of medications or treatments available to slow down the damage from my auto immune diseases is limited. In addition, not all of them work for me as they do for others and vice versa.

I’ve found that lately I’ve run out of options when choosing a course of action against my diseases.

My doctor believes, and I agree, that my body is developing a tolerance towards medication. I’ll go anywhere from 5 to 8 months with good progress and all of a sudden I’ll take a huge nose dive and begin experiencing flare after flare. Nothing in particular sets them off and I never know when they’re coming. All I know is when my medication stops working that increasing the dosage makes no difference.

Arlene Grau

Arlene Grau

All the progress made in the previous months is simply wiped away and I have to start all over.

When I was first diagnosed with rheumatoid arthritis, I was put on a low dose of prednisone. Then I was switched to Enbrel injections, which I learned to administer myself. After about a year and a half, I stopped making progress and went on to try Humira, another injectable drug. I got better and stayed that way for almost a year. Then I was in such awful shape that my doctor resorted to infusions for a few months and eventually added chemotherapy.

This treatment went on for quite some time and although I felt terrible physically, due to the side effects of chemotherapy, my lab work showed that I was making great progress and my joints did seem to be less painful. But my quality of life was unbearable. Eventually, the chemotherapy began affecting my liver and I had to discontinue treatment.

Today I take a combination of pills and injectable medication as sort of a last resort. I know there are few other options if they don’t work for me, and lately they haven’t. I’m at the end of my rope. I’ve tried just about everything there is for me, and in most cases I loved the medication because after I got over the initial side effects they worked great. However, my body continues to fail me.

I don’t want to use any prescription in a last ditch effort to get better, because I know that the medications I haven’t tried yet are usually the ones that are the most dangerous or come with the most warning labels.

But I am beginning to wonder if there is anything that will help me so that I no longer wake up at midnight in tears because I can’t stand the pain. Or I’m up all night because I feel like I’m bruised from head to toe.

Some relief is all I’m after. A glimmer of hope.

Arlene and girlscropped1Arlene Grau lives in southern California. She suffers from rheumatoid arthritis, fibromyalgia, lupus, migraine, vasculitis, and Sjogren’s disease.

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.