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...

RA Treatment Options

Here's what I've learned from reading, doctor visits, and talking with other RA patients. I am not a doctor, but as a biologist I have studied biochemical reactions and understand the mechanism of some of these medications and the impact they have on feedback systems in the body.

DMARDs such as methotrexate are first line of defense against RA. They are chemical in nature and usually disrupt a feedback system that generates TNF. TNF is your body's tumor necrosis factor (natural cancer killer) and can differentiate into many types of immune cells including interleukins that, among other things, regulate inflammatory reactions. DMARDs do suppress some parts of your immune system as a way to control cells that promote inflammation.

Biologic response modifiers (BRMs) such as Enbrel and Humira are very targeted approaches to treating RA. For example, Humira is a fully human antibody that disrupts action of TNF-α. Because it only targets one type of TNF cell, it has less of an impact on your immune system than DMARDs. Enbrel and Humira are injectable because antibodies can be destroyed by the acidity of your stomach. There are other BRMs that are given via IV infusion that I am not greatly familiar with. I believe they have similar mechanisms of action.

Prednisone is a steroid that combats inflammation. It treats symptoms, not the disease. It can make you feel like you're in remission, which is great but it can also have harmful long-term effects if used in high doses for a prolonged time. Steroids can affect reproductive hormone feedback systems and cortisone production. You should never stop prednisone "cold turkey." Always talk to your doctor before starting or stopping any steroid. It can be absolutely necessary to take when you have RA, although most doctors prefer to use low doses and short cycles, such as a 7-day medrol dose pack. I have been through several cycles of prednisone and, in my experience, the more cycles you go through, the less effect it has.

NSAIDs also treat inflammation, as you probably know. The problem is they can cause liver toxicity and damage stomach lining when taken for long periods of time.

Learn all you can about RA - it's not just a joint disease. It can have vascular and systemic effects. It can attack the lining of your heart and lungs and other organs. It's not a disease to be taken lightly. Do not be afraid of biologics. They are more natural to your body than many other chemical medications. Humira is made in a way similar to how human insulin is made. Above all, find a good rheumatologist and talk to him/her about all your concerns.

Elbow Flare!

Meet Dulci, one of my two whippets. She loves her cave bed and doesn't it look comfy? :) 

I can't sleep. This happened last time I started a course of steroids, too. Plus, tomorrow is my first day of physics lab and I'm nervous to be getting back into the swing of things.

Monday I had a flare in both elbows. So obviously no effect from Humira yet, not that I expected it this soon. It was the worst pain I have ever felt, worse than an obstructive kidney stone, worse than trigeminal neuralgia and seizure headaches, worse than having a neuroma injected with corticosteroids. My elbows were so hot! It felt like the synovial fluid was replaced with MOLTEN LAVA! All I could do was lay there, keeping my arms still, and just cry. I could not believe how much pain I was in. At first, it felt a little better to extend my arm, but then any movement at all hurt. Tuesday I woke up feeling a little better, but as I used my elbow more, it flared just as badly as Monday again.

Rheumy prescribed another round of prednisone. I hate taking steroids and rheumy agrees, but he's more worried about the damage being caused by these constant flares. I know I'm lucky to have a rheumy who was willing to treat me aggressively right away and when I call with flares he always calls me back personally. I have worked with doctors for almost a decade and that is something special.

RA is moving like wildfire lately with a neck flare and the migraines that caused, new joints affected, tendonitis in flaring joints, small red bumps near flaring joints, and pain in my SI joint area. My mom was diagnosed with ankylosing spondylitis along with RA. The first rheumy I saw told me that was impossible and that her doc was a quack. He had a horrible bedside manner, needless to say. I don't know whether mom really has the fusing characteristic of AS but I know she had pain in that area.

Maybe if I lay very still I will be able to finally sleep. More likely I'll be ready to sleep when I should be waking up in a few hours. *sigh*

Waiting for Spring

♫ Talking to Myself ♫

You know - people who don't think this is all in my head or that I'm trying to be lazy are all very worried about things like... getting back to my normal schedule, exercising every day, addiction to pain meds, etc. But what keeps cycling in my head is that part of me is gone. That carefree, active me - the me that never worried about how late I stayed up or how much I pushed myself or how much stress was involved in obtaining my goals, the OCD neat freak, the perfectionist, the nothing-is-ever-good-enough goal-oriented person - has faded over the last two years and I'm grieving for my loss. The more I learn, the more I realize how everything is going to change.

When my symptoms started getting worse, I was a full-time-and-a-half student with dreams of a PhD and a career in environmental biotech research. In the last year, I dropped 3 classes, failed one, and ended up withdrawing from my whole spring semester. I also bowed out of a second internship with a huge national laboratory. I was supposed to get married this fall, but we had to break the news of postponing the wedding to our families this summer after realizing the planning is a major source of stress - and flares. I'm planning on taking some classes this fall, but very worried that I won't be able to handle it. All my plans are changing.

My energy levels are nil, I'm constantly flaring, and my symptoms are just getting worse, despite treatment. Today I gave myself my first shot of Humira. I'm excited to be starting biologic therapy and really hoping it helps soon!! I'm also taking 25mg of methotrexate per week and prednisone tapers as needed. I haven't seen results yet, but I'm trying to be optimistic. 

I have a long road ahead of me and I know I need the love and support of RA friends. I'm part of a wonderful support group that has helped me step outside my cave of anger and depression. I hope I can meet more friends through this blog and maybe someone will be helped by hearing my story. 

Waiting for Spring