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.

Tuesday, October 30, 2012

Secondary Fibromyalgia

My rheumy just added another diagnosis: fibromyalgia (FM) secondary to inflammation from RA. I was complaining of an all-over prickly, itchy, irritated, crawling, bug-biting sensation that is worse in the evening. FM makes me so tense and it makes me want to literally take my skin off. It's an absolutely infuriating feeling and I don't know how to deal with it. To be honest, some nights all I can do for relief is have a drink. Alcohol helps calm my nerves, apparently.

Rheumy explained that the high levels of inflammation I have can cause irritation to nerve endings, hence my symptoms. He didn't offer anything to help relieve it, just that once we get the RA under control I should get relief from the FM as well.

So I hit the internet, wondering what other do for FM relief. I found that most people take an anti-anxiety or anti-depressant medication that seems to relieve some of the nerve problems. So I found an internist here in town and made an appointment. Now, if you have RA you know why I was ridiculously nervous about that appointment: you never know if the new doctor is going to understand RA/FM, be willing to treat it, understand the myriad of medications you take, or if they'll even treat you like a human being or if they'll tell you it's all in your head!

My new internist is great. First of all, she runs on time (WOW!). She understands RA and even gets how hard it is emotionally. She seems very on top of things, has given me a lot of good information, and has me starting Cymbalta. It could take a while for it to work, but I'm really hoping to see some results, not just for FM, but also for depression.

Monday, October 15, 2012

On Being Put in My Place

Have you ever just been skipping through life, thinking things were okay when, suddenly, life shows you exactly who's boss? It might be something insignificant like doing something embarrassing or maybe it's something more important, like losing your job. I've had a bit of both sides of the spectrum lately.

RA really put me in my place. It took the wind out of my sails, planted doubts and insecurities that bloomed into depression and anxiety. For a while I tried to fight it, I thought I was just overtired from school and work. I tried cutting back to just school. That worked for a while, but before long I could not longer handle classes either. I kept telling myself that I just needed a break, that I would feel better soon. Every time I made adjustments to my life, RA pushed back harder and faster and I found myself making adjustments all over again. 

When I finally succumbed, I was left with no job, no classes, no energy, no confidence, and an ever dwindling pool of optimism. For almost 5 months, I hid myself from the world, from my friends and family, even tried to hide from my fiance which is pretty difficult with him in the same house. I was (and still am) in so much pain that I would rather sleep than be awake and able to feel that pain. I couldn't talk about what I was going through because I didn't know how. The very thought of verbalizing how I felt brought me to tears. I felt that I had lost everything that made me who I am. I felt I no longer had any value as a human being. What was I contributing? What could I possibly offer anyone?

The sheer speed and aggression with which RA took over my body left me in utter bewilderment. I couldn't see how I would possibly recover from a disease that is known to get worse over time and, in less than a year, had decimated all that I had worked so hard to achieve. 

A close friend had been on my case all those months about the way I was coping. Some things she said were insensitive - like how I shouldn't take pain medication because I would become addicted. But some things she said were spot on, like how I needed a support group or some form of therapy. I ignored her advice for a long time, because I simply wasn't ready to talk about it yet. And that was okay. Considering what RA took from me, I think I was entitled to a mourning period.

When I finally did look for support, I found an online forum (MD Junction's RA Group) that gave me a place to vent the frustration and anger I had been holding inside for so long. The members there are supportive above all else and they are kind. But I also felt the need for some form of friendship, some comradery, something to make this new state of existence feel more normal. For that I found Squeaky Joints

Between both these amazing groups, I have found some rather extraordinary friends. And for the last few weeks I have felt almost normal, talking to others, joking and laughing like I haven't in many months, and feeling a sense of belonging. I wanted to do something to show my new friends how much I care about our plight and maybe I was even trying to prove to myself that I still had some value. 

So I made the RA Map. And for a couple of days, I felt like I was worth something again and I was doing some good. And then life came along and put me in my place. I had been misunderstood about the map, it wasn't what people assumed it was. The overanalytical worrier in me is thinking everyone is angry with me. The bulk of the info tied to the map is gone and I'm back to square one. And now I feel like I did five months ago - isolated, alone.

There is one key difference this time: I know the feeling won't last. The Pre-RA me would never have given much thought to an event so relatively insignificant. But as I am stripped of my pride, confidence, my accomplishments that bolster my self-worth, this insignificant event is a set back. But only for the moment. 

Saturday, October 13, 2012

RA Patient Map

Do you want to connect with other RA warriors?

Living in a small town in northern New Mexico, there aren't many opportunities to reach out and meet with other people who have RA. I have compensated for this by talking to other RAers online and I have found an amazing group of people who always make me laugh! 

But sometimes I feel quite isolated. The people who really understand what I'm going through live in other states and other countries. How nice would it be to have an RA BFF who lives nearby, someone I could meet face to face? In all the support groups and forums I have participated in, people are asking each other where they live.

Wouldn't it be great to have one place we could go to see where our online friends live and to find out who lives near us? Enter the RA Patient Map.

Join the RA Patient Map!  

2. Click "Additions" then "Add Marker-Simple" 
3. Type your email, name and city, state
4. Click "Submit"
5. Then double click on your new marker to add more info!
     Ý Add your website, blog, or list more information about your RA and related conditions in the description field. Most fields are optional so you can add as much or as little info as you want.

You don't have to use your full name or physical address, but since the idea is to be able to contact those close to us, it would be nice to have some way to get in touch. If you want to be more private, use your first name only and a nondescript email address. You can always go back to the map later and change what information is connected to your marker.

Be sure to share the map so we can get more people added!  You can publish the map into your blog or other website by clicking Print or Share, then Publish in Website, choose the options you want on your map, then copy the code into your website.

Click here to see the map in my blog!

Sunday, October 7, 2012

Traveling Hurts

This week Mark and I drove 4.5 hours south to visit the guest ranch where we'll be getting married next year. It was absolutely beautiful! We made some changes to our plans, but I think it's all going to work out. I fully expect my body will cooperate with me after a year of continuous treatment (*fingers crossed*).

The weather was beautiful!!
(All photos are personal and 
are not for use by any third party)

Entering the courtyard

They are expecting treats :-) We did end up giving them some apples.

Driving (well riding anyway) is difficult with RA. Two things are going on right now: stiffness and flare. For stiffness, I feel better if I move around and don't sit too long. For flares, I feel best (but not great) if I don't move the flaring joint at all. Of course, I'd rather have stiffness than flare pain, so I haven't been a bundle of energy the last few months. Even rotating my ankle while sitting down, just out of habit, is enough to push that joint to flare.

So, understandably, I was really nervous about the trip and all the walking and visiting we planned to do. Mark's parents met us at the ranch, as did my mom and my MOH. It wasn't the first time they've seen me since RA has taken over, but it's the worst they've seen me and I felt massively self-conscious. After walking around for a few minutes, my right knee flared (for the first time ever) and I had to stop. The only place we had to sit and rest was on a bench in a gazebo (I know it sounds AWFUL right? LOL).

Well the bench hurt, sitting hurt, my knee hurt, and I was the youngest person there!! I felt about a million years old. *sigh* I am just going to keep telling myself: One day at a time, I'm doing all I can, this will get better. That's my mantra and I'm sticking to it.

Waiting for Spring

Thursday, September 27, 2012

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.

Sunday, September 16, 2012

My Lucky Night!

While relaxing in the hot tub tonight, I saw 5 shooting stars, all within 45 minutes! Does this mean I get 5 wishes?


1. I wish that Humira would kick in finally and work for a long long time, giving me a long-lasting remission. Hey, if you're gonna wish, wish big, right?

2. Since I wouldn't be having anymore pain, I wish to be able to be active again!

3. I wish to lose weight!

4. I wish to be able to get through this last year of school and finally graduate!

5. I wish for all of the above to give me and Mark a more normal relationship, to be happy and active and carefree the way normal 30 year-old couples are!

Hoping for Spring!

Friday, August 31, 2012

2nd Humira Shot

Today was my 2nd Humira shot. This time I gave it in my thigh. I haven't figured out how long to let it "warm up" for, last time I let it sit out for about 30 minutes but it was straight out of the cooler from being shipped. It didn't burn that much then. This time it had been in the refrigerator and I read something that said to let it sit out for 10-20 minutes, so I gave it 20 minutes. It wasn't enough - it burned a lot and my leg has been sore all day. Had nausea right after the shot, again. I was told that it wasn't the Humira doing that, maybe it's just giving myself a shot.

Last night I had a seizure, first one I've had in a long time. It wasn't exactly typical in that it lasted about 10 minutes, a lot longer than usual. I've had ones like this, but not often. When they last that long, I have severe disparities in spatial- and self-awareness. Last night my brain was perceiving my body as very small while my head and hands were very large. It sounds crazy and feels even crazier. I got the usual nausea and weeping. Also had the usual burning and tingling on the right side of my face, head, and neck.

Am wondering why now? Is it the RA meds? Is it stress from school again? Is it lack of sleep? All of the above probably. I hope the RA meds aren't playing a role though. If it is and it causes seizures the way hormonal birth control does, I'm in for a lot more seizures :-/

My elbow was flaring really badly again last night. Still waiting to hear from rheumy what he thinks. I know he wants the Humira to kick in so we don't have to deal with it, but in the mean time I'm in some pretty crazy pain.

Waiting for Spring

Thursday, August 30, 2012


These are from previous classes, but today it feels like I'm taking them all at once!

Well here I am at 3am just wrapping up some homework. I can't seem to get in a daily routine with it. I have such trouble sleeping when I'm supposed to be asleep that I end up napping off and on during the day.

The pain in my elbow is back, and then some. So the prednisone has completely worn off. I woke up today with very tender joints. My sternum hurt to touch! That's new! My hands and upper arms and shoulders and neck and back and geez... everything is tender and swollen.

All of this is really getting to Mark. It hurts so bad just to be touched lately that I cringe when he tries to hold my hand or rub my back. So sad that when he is trying to be so loving, all I do is shy away. 

Things that should be so easy, things that should be enjoyable... are difficult and painful. I'm having so much trouble just thinking!! It's just the second week of school and I feel so overwhelmed. :(

Waiting for Spring

Thursday, August 23, 2012

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

Friday, August 17, 2012

♫ 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