Hope (Or: Cautiously Optimistic)

So, recently big things have been going on. I received an email from my rheumatologists office that a PA (prior authorization) for a drug called Cimzia had been faxed to their office. Funny thing is, I’ve been trying to get Cimzia for about 6 months now.

First, in July, I developed antibodies to Humira (I had been on it for about 18 months) and my rheumatologist wanted to try Cimzia. Cimzia is a TNF-inhibitor that costs around $50k / year, not exactly something I can just write a check for without some help from my insurance company. 2 appeals and 3 denials later, I was on Enbrel. Enbrel never really worked for me, although I and everyone around me really wanted it to. I continued to have flares of the symptoms I could see (ulcers, skin lesions, etc), and I spent my time constantly worrying about the possibility of symptoms that I could not see. Although my rheumatologist tried her best to reassure me, you don’t walk away from 11 surgeries with a great deal of confidence in your body to do what it’s supposed to. 

Once we knew the Enbrel wasn’t working, my doctor tried again for Cimzia. And again we were denied. And again we appealed. And again we were denied. At that point, I was growing increasingly concerned about not having anything to control the Behcet’s, so we submitted a prior authorization for a different TNF-inhibitor (and by “we”, I mean the saint of a nurse who works on my case).

Then, I got the email that my Cimzia had been approved. I’m not going to lie, I got the email on a Friday while sick on my couch with a second bout of flu in a two-week time frame, and I didn’t really believe it. I thought they had just typed the name of the wrong drug. I emailed my rheumatologist, and she email back on a Sunday (she’s also a saint!) that she would look into it. On Monday, I got the call that it was a PA for Cimzia! Apparently, an independent review board had reviewed my case and reversed the insurance company’s decision!

Now, after months of waiting, it was time to do my work. As glad as I was for the medication, and as hopeful as I was for the remission that seemed to be within grasp, I also knew that I was going to be injecting some pretty nasty shit into my body.

When I started the Humira, I spent about the first 2 months being exhausted and feeling pretty low. After that, my body acclimated and it was fine. For the first few months I was on Humira, I did my injections on a Friday night or Saturday morning, and then slept off the initial side effects for the rest of the weekend. This worked well from a physical health standpoint, not so much from a mental health standpoint. I remember one day where my good friend came over, and I didn’t even get off of my couch while they were at my house. I just felt tired.

The day came to inject the Cimzia. I injected both doses on a Saturday morning, getting the initial bad taste in my mouth and dizziness combo that I was used to. By Saturday evening, I had a headache that was unresponsive to medication, but I knew the Cimzia was working. In the next 36 hours, I slept for 26 hours but resurrected myself and went to work on Monday morning. I felt foggy until Thursday, but I’ve been doing well since then.

As of today, I haven’t seen much of a change in my physical symptoms, but I have so much hope that it’s coming. The first three doses of Cimzia are double doses, so I am very anxious to see how I feel after the next round. I take the meds bi-weekly, so my next dose will be next Saturday. 

For those of us living with a chronic illness, hope is what gets us through each day. However, I can honestly say for the first time in awhile that I feel as though the hope that I have is joyful. I’m excited to see what the coming weeks bring and how my body will respond!

Advertisements

4 thoughts on “Hope (Or: Cautiously Optimistic)

  1. Alison,
    Biologics are so tricky, but hold so much promise- it’s quite the conundrum. I’ve tried Humira and Enbrel with no luck, a lot of bruises and pain (and Disney band-aids). I REALLY hope this new medication works works wonders! Take care, and kick some butt!

  2. Dear Alison
    I was diagnosed in 1987 after 10 years of no answers. My story is like so many . I just started taking/injecting MTX again and have all of the side effects your describing. I took Remicade infusions for 7 years but developed antibodies to it and had to quit. Hang in there . Sending gentle hugs. Barbara in Florida

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s