Tuesday, April 05, 2011

Life As a Dinosaur: Failing the Drug Therapies

January 2009 - September 2009 - Want to know how to stress out a people pleasing, perfectionist, worrier? Tell her that she's failed the drug therapies that are supposed to be making her feel better, that's how. Yup, if a drug doesn't work for you, you fail it, instead of the other way around. Talk about depressing someone even more than they already are.

Since the methotrexate wasn't working on its own, the rheumatologist decided we needed to step things up a little. That meant going to the "biologic" drug therapies. Biologics are genetically engineered proteins derived from human genes. They are designed to inhibit the parts of the immune system that play a role in fueling inflammation. Because they suppress the immune system you have to be very careful about not being around others who are sick and you also have to be tested for TB before you can start taking them. Additionally, you are strongly advised against taking live vaccines while on on these therapies.

I started out on Humira, and HOLY CRACKER JACK BOXES BATMAN are these drugs expensive! I paid a $75 copay each month for two (that's right 2!) doses of Humira. I can honestly say that before this point in my life I thought I understood the choices that some people on fixed incomes have to face. You know the ones that involve whether or not they buy their meds, food, or pay bills. Yeah, I can truly say that I didn't REALLY understand. TheHusband and I figured it out, and if I didn't have the health insurance I have and we had to pay out of pocket for this treatment it would have cost us about $18,000 for me to be on this treatment for a year.

I was on Humira for about 6 months. Every other week I would have to inject myself (either in the abdomen or the inner thigh) with the treatment. At first it seemed to work, and then it leveled off, and then I started to get worse again even after the doctor increased the dosage. So after 6 months the rheumatologist switched me over to Enbril (another biologic drug).

Enbril is also very expensive and a year on that medication would have been around $22,000 out of pocket. I am sooo thankful for the health insurance I have, I just cannot express how thankful I am. The Enbril was also in the form of an injection and I had to do that once a week. I was on it for about 3 months and it didn't help at all and I continued to get worse.

It was at this point that the rheumatologist really started to lose my faith (and completely lost the faith of my husband). It was at this point, after I've been on injections for 9 months, that she decides to tell me that my weight might be affecting how the drugs are being absorbed and that I might do better on the intravenous infusion type of biologic. Really? REALLY?!? You wait 9 months to tell me that my weight might affect how my body absorbs or not the injections??? It's not like I don't know that I'm fat, so really 9 months?? After we've asked about a thousand questions before deciding on this course of treatment, it takes you 9 months to tell us that "little" detail???

So after taking a few deep breaths (I really was speechless about this at the time) we decided that the best course of action would be to ween myself off from all the drugs and start "fresh". We also decided that when I restarted on the infusion version that I would take a different DMARD, which meant no more methotrexate for me!

I have to say that the thought of life without the drugs was a bit frightening. I mean, if I hurt as much as I did when I was taking the drugs, what would it be like without them? But I tried to think positively about the outcome. I mean, I wasn't going to have to take methotrexate anymore and the new drugs would be going directly into my blood stream which should work better. So the temporary increase in pain would be worth it in the end. Right??

Author's note: This is post is part of a series regarding my experience(s) with an autoimmune disease. My experience is unique to me and does not speak for all patients with autoimmune diseases. 
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