Wednesday, November 28, 2012

Tailbone Flare

Who knew RA could attack your tailbone?!?! I surely did not. Yesterday I noticed some soreness in my tailbone and that it was uncomfortable to sit upright. This morning, one of my ribs joined the party and my tailbone hurt so badly that it even hurts to walk.

I am now two weeks into Enbrel and have not felt any effects. In fact, I feel worse. It may be because of the week and a half I went without any treatment (except methotrexate) due to switching from Humira to Enbrel. My mother went undiagnosed for years after RA hit her and when she finally settled on a treatment, it was Enbrel. She still takes it now. She is not in remission, not pain free, but she does live a pretty normal life. I can only hope Enbrel will do the same for me.

Both my internist and my rheumy have said that because RA hit me so hard so fast, that they have reason to think I will be able to reach remission. This sounds counterintuitive to me, but perhaps there is some research study out there proving just that. Here's hoping!

Wednesday, November 21, 2012

Vitamin-P Plays Good Cop Bad Cop

For the last five weeks, I've been on a long prednisone taper, starting at 25mg per day just before the trip Mark and I made to our wedding venue in the Hondo Valley. I hoped to ease some of the "retaliation pain" I feel after traveling. I was still pretty wiped out but better than I would have been otherwise. About a week after I started the taper, at 20mg then, I was feeling really good. I wasn't my old self by any means, but I was in much less pain than usual and realized that I have been putting up with far too much pain.

Once I stepped down to 10mg, the pain crept back. The day after I took my first 5mg dose I was flaring worse than ever. My neck flared first, so badly I had a migraine that would just not quit. I was taking pain meds left and right and using cold packs on my neck and head but I couldn't get control of the pain. I talked with my mom who's a nurse practitioner and has her own experience with Vitamin P and RA. She suggested taking 15mg that day, then 10mg for a week, then 5mg for a week.

Two weeks ago I finally got off the taper and saw my rheumy. My blood pressure was 180-something over 120-something!! That's far higher than I have ever seen it. Yesterday I saw my internist and my BP was a little lower than that, but still very high. I have been having horrid headaches and neck pain since about week 3 of prednisone. I had never given it much thought before, but prednisone can raise your BP and cholesterol levels. Now my docs say that prednisone is no longer an option for bridge therapy. With my BP that high, I could have had a stroke.

So without the ability to relieve a flare from prednisone and without a working biologic, all I have to rely on for the pain is hydrocodone. I feel like I'm on very thin ice right now...

Wednesday, November 7, 2012

Humira Bites the Dust

Well, it's official! I have failed Humira. After 3 months of treatment, I have seen a small improvement in my inflammation markers and have felt a small increase in energy, but my disease activity remains high and my pain levels are still uncontrolled. Rheumy says if it was going to help me, it would have already.

So what's next? Rheumy had two options for me: Remicade and Enbrel. At first, I pushed for Remicade because I like the idea of being able to use loading doses to build it up in my system faster. He explained that this didn't necessarily mean it would be a more aggressive form of treatment, however, and that the two were comparable in his mind. As I'm currently driving 2 hours one way to see him, he wants me to try Enbrel first in hopes that I will be able to manage this more conveniently. So I'll do what he asks and pray that Enbrel is the one for me.