The American College of Rheumatology Annual Meeting

When I was in Boston for the Joint Decisions Empowerment Summit, I also had the opportunity to spend a few hours at the American College of Rheumatology (ACR) Annual Meeting with a press pass. (I know, I know. That was in November! This post is better late than never, right?)

It was an interesting and, honestly, rather overwhelming experience. When you walked into the convention center the giant main hall was primarily taken up by the "booths" of the different major biologic medications. I say "booths" because these setups weren't really booths. Really they were enormous, elaborate, and extremely swanky...pavilions? Areas? I don't even know. But they were fancy to the point where they had padded carpeting and you could feel the difference when you stepped into their area from the conference hall floor. 

Nearly all of these booths had coffee bars giving away free espresso and sometimes desserts or snacks to conference attendees. I did decide to take the Enbrel booth up on a free latte. I figured they owe me at least that much after all these years! One of the medication booths even had an elaborate video game setup where you could "learn" about how their drug worked by playing a video game (though, ironically, if you actually took the time to read the facts and learn you totally lost the race. So I'm not exactly sure what they were thinking there.) The amount of money spent to design, create, and run each of these booths must be be simply astronomical. And while I do realize that a certain degree of advertizing is necessary from a business perspective, the whole thing just left me wondering whether that money could have been put to better use to somehow actually improve the lives of patients living with these diseases.

I also realize that ACR is a giant scientific conference primarily intended for medical professionals and scientists - not for patients. But, seeing as patients are the reasons the doctors and pharmaceutical companies have jobs in the first place, it was sort of interesting just how little patient presence there was. Creaky Joints and a few other patient advocacy groups were there, but they all had tiny little booths that were off to the side of the hall. I assume that this was due to cost considerations, but it was sort of symbolically interesting that the huge pharmaceutical booths were front and center while groups supporting the patients who actually take these medications were pushed over to the side. 

During the few hours I had at ACR I had time to attend one talk about the current science surrounding methotrexate (ironically while beginning to feel nauseous from the dose of methotrexate I had take the previous evening. Fun times!) And while I also realize the point of most of these talks is to get doctors up to date so that they can do the best job possible helping their patients, I have to admit that it felt a little strange to be discussed as nothing more as a dehumanized number on a graph.

Ultimately I know that the rheumatology community is working very hard to help people living with rheumatic diseases. And I know was only able to explore the conference for a few hours. But it made me wonder whether there was anything that could be done to make patients more a part of this process - rather than pushing them to the side or seeing them as nothing more than consumers of medication. It would be nice to find a way to make patients seem, well, as human as the medical professionals attending these events. 

Back To Square One. Again.

It has probably happened to everyone who has ever been diagnosed with RA. One day you start to notice that your medications don’t seem to be helping as much as they used to.

Read more at RheumatoidArthritis.net.

The Power of Chemo

After hearing I had to take a chemo drug, my friends almost universally reacted as if my RA was much more serious.

Read more at RheumatoidArthritis.net.

Methotrexate: The Results - Day 2

Unfortunately, I'm still feeling horribly nauseous this morning. While I did remember that methotrexate has the potential to cause nausea (though I don't feel like it really did last time?) I couldn't quite remember what I am supposed to do about it. I emailed my rheumatologist, but he hasn't responded yet. So this prompted me to take a highly unrecommended action - I googled it.

Turns out methotrexate makes you feel nauseous not by irritating your stomach but by stimulating a receptor in the brain that causes nausea. And what can be done about it? (1) Take a folic acid supplement. (2) Ask your doctor for a prescription for zofran. 

So.....It's like being first trimester pregnant. Forever?

All I can say is that I hope after a few doses the benefits begin to outweigh this nasty side effect. Because right now all I can think is: I made the horribly difficult decision to stop breastfeeding my baby....for this?!?! 

I feel pretty discouraged right now.

Methotrexate: The Results

Dear Chemo Drugs:

You are worse than I remember.

Love,

~An Exhausted and Nauseous Mother

Methotrexate

Just took my first dose of methotrexate in four years. Wish me luck!!

Time To Wean

I swear it feels like just yesterday that CZL was born, but little CZL isn't quite so little anymore! He weighs more than 14 lbs and he is almost three months old! CZL is a beautiful, happy little baby and his big brother OZL completely adores him. We are a very happy little family!

But, unfortunately (but not unexpectedly) I am not doing so well. Despite the fact that I am currently taking Enbrel and prednisone, my RA is flaring. Badly. And I am struggling every day with extreme fatigue (being up for CZL in the middle of the night is not helping) and terrible pain, especially in my hands and wrists (which makes literally everything baby-related painful to accomplish). Just like last time, I know it's time. It's time to wean.

But that doesn't really make it any easier.

I have so many mixed emotions right now that I'm not really even sure where to start. First of all, I guess I have to admit to being somewhat surprised over just how emotional I feel about weaning the second time around. I have grieved over a lot of things that RA has taken away from me - my active lifestyle, my career aspirations, the ability to hop out of bed in the morning feeling great...and breastfeeding. I really thought I had already grieved over losing breastfeeding when I weaned OZL. But somehow I find myself grieving all over again. Especially since this has been an incredibly easy nursing experience - CZL has a great latch, I didn't deal with any cracked or bleeding nipples this time, and my milk supply has been fantastic. But even though I absolutely knew this day was coming - and I know from my own experience how much more there is to motherhood after breastfeeding - I still find myself feeling unimaginably sad about weaning CZL.

And I'm honestly struggling a little bit with the fact that this may be the last time I ever breastfeed a baby. We knew that we wanted OZL to have a sibling, so even though I was sad to wean OZL I knew that I would have another chance someday. This time I'm not so sure. I always thought I wanted three kids, but I'm not sure how realistic that is for us. This past pregnancy was extremely difficult for me, and I'm honestly not sure whether I would be able to survive another one. We aren't making that decision anytime soon - I'm going to get my RA fully treated and then we will wait a few years and see how we feel - but it is possible that CZL could be my last baby. And that does make weaning just a little bit harder.

I also have to admit to feeling a little bit disappointed. I stopped nursing OZL so that I could start taking Enbrel again, but with CZL I was forced to start back on Enbrel during my third trimester. So, since he was already exposed to the medication (and the information on safety is better than it was two years ago) I made the decision to stay on Enbrel while nursing CZL. So I think, in the back of my mind, I thought I might actually be able to nurse CZL a little longer than I made it last time since my RA would theoretically be better treated. But, in reality, I think my body is just worn out from dealing with RA that has not been fully treated for four years. Despite being on more meds than I was last time, I am actually struggling just to make it to the three month mark. And that is a bit disappointing.

And then there's some complicated emotions that, although they have to do with stopping breastfeeding, actually have nothing to do with my baby. Like I mentioned above, it has been four years since my RA has been completely treated. I stopped taking methotrexate six months before APL and I got married so that we could start trying for a baby right away. It took us four months to conceive and then I was off Enbrel for a year while I was pregnant and nursing OZL for three months. Then, because we knew we wanted our kids to be close in age, I never went back on the methotrexate at all due to the amount of time it takes to start working + the amount of time it takes to get out of your system. It just wasn't worth it to go back on between kids. And while the Enbrel does help it has never been enough all by itself to control my RA. So, to reduce the overall amount of time I would spend with partially treated RA, we started trying for our second as soon as OZL turned one. But this time it took us 8 months to conceive. And then I was off Enbrel again until my third trimester. And though I am back on the Enbrel now, I'm still having a hard time. Because, all together, it has been four years that I have been living with untreated or partially treated RA. And I think my body is just completely worn out.

But once I am finished nursing CZL, I will have the whole wide world of RA medications available to me. My body will be my own once again and I can do whatever it takes to get me feeling as good as possible. And I am honestly excited about the possibility of feeling better than I have felt in a long, long time. Most of me believes that I will be feeling lots better soon, and I'm excited to have extra energy to be a better mom to my boys.

But there's also a part of me that's a little bit scared.

It feels a bit like going back to square one. When I was first diagnosed, it took a long time to figure out what my "new normal" was going to look like - and even longer for me to accept that "normal" and learn to be happy again. And I have to admit that I am a bit nervous to "rediscover" my normal, if that makes any sense. Because, for the past four years, the fact that my RA has been partially treated has been sort of a handy excuse to keep my spirits up when I wasn't feeling well. I knew things were crummy but I could always say to myself "don't worry! Things will be better when my RA is fully treated! I'm doing this for the good of the family!"

But...what if things are not better? What if the treatment doesn't work like it used to? What if I am still in a lot of pain or dealing with large amounts of fatigue - despite being able to take all the meds? And now I also have two little kids to raise? What if things aren't going to get better? I am trying to stay positive and take things one day at a time - the way I always try to keep looking forward. But I have to admit that, at least sometimes, forward seems a little bit scary.

Means To An End

Last weekend the weather was quite nice, so my mom and I went out into the backyard to to start attacking the one hundred billion leaves that were blanketing my lawn. Unfortunately my knees have been in so much pain lately that I found myself wearing double knee braces. And I only was able to do a little bit of raking before I had to give up and sit down.

I tried to remember the last time my RA pain had been this bad. Luckily, this blog is like a health timeline for me, so I scrolled back through my posts until I found the last time I was wearing double knee braces: right before my wedding and then again on my honeymoon.

There was a reason I was in so much pain at that particular time. Although I didn't make it public at the time, when my wedding rolled around I had already been off methotrexate for more than six months. I needed to get it out of my system so that it would be safe to conceive OZL. And although I stayed on Enbrel until I found out I was pregnant, Enbrel alone just wasn't enough to keep my RA completely under control. During the six months leading up to my wedding and the four months it took to get pregnant, I dealt with massive knee pain, excruciating hip pain, and extreme fatigue.

Luckily, I did experience at least some remission during my second trimester. But, by the time I hit the third, I was dealing with a huge pregnant belly and hip pain, hand pain, and major morning stiffness (not to mention a couple pregnancy complications). In the end I was put on bed rest until I hit 37 weeks, and OZL was brought into the world a bit early, which ended up being better for both of us.

I nursed OZL for three months until I reluctantly stopped so that I could start taking Enbrel again. Getting back on the Enbrel made a major difference in my quality of life and ability to be the mom I wanted to be. But since that time I have dealt with flare after flare because I never went back on the methotrexate.

Why? Because we want OZL to have a sibling. I have two siblings and APL has one. Neither of us can imagine our lives without our siblings and we really, really want OZL to have the opportunity to grow up with at least one brother or sister.

I never went back on the methotrexate because it was too much of a time commitment. It would take several months before it even started helping, plus however long I stayed on it to get the benefit, plus six more months to get it out of my system again before it would be safe to try to conceive another baby. We decided we didn't want our children to be so far apart in age. And, while we probably would have preferred to wait until OZL was a little bit older to start trying for a second baby, in our world the longer we wait the longer I end up dealing with RA that isn't completely treated. Which means I am living with more pain and more fatigue. So, after weighing all of our options, we decided to start trying for baby #2 when OZL turned one in May.

It has been seven months and unfortunately we are not pregnant yet, though I will admit that for at least two months my ovulation lined up so closely with my RA flares that we weren't even able to try. We are trying to remain optimistic, but in the meantime my RA has gotten worse and worse - to the point where I am wearing double knee braces just to stand in my own backyard.

The Enbrel just isn't enough on its own, and over the counter NSAIDs aren't helping. So I finally went to see my rheumatologist yesterday. With my options for medications severely limited by my desire to get pregnant, I agreed to try some prednisone (i.e. Satan's tic tacs). Prednisone and I have a long love-hate relationship. It is wonderful because it usually works great to give me less pain and more energy, but with prolonged use I get almost all of the nasty side effects. A few years ago, after being on prednisone for more than a year, I decided that the side effects were way worse than the benefit and swore never to use it again. But, of course, there are only so many options - especially when trying to conceive.

I know that I need more than just Enbrel to keep my RA under control so that we will have a chance to have a second baby. I am really hoping this will be a temporary commitment to prednisone, perhaps a month or two until I am pregnant at which point hopefully I will get some remission and not need it anymore. I don't look forward to moon face or weight gain or insomnia or blood pressure issues. But I do really look forward to growing our family - and that will make it all worth it in the end.

Knuckle Injections

Today is not my favorite day.

OZL is cutting a tooth. I can finally feel it poking through his top gums. So he is drooling all over the place and is not a particularly happy camper.

On top of that, my hands have really been killing me for the past couple of weeks. It has been getting quite difficult to take care of OZL without a fair amount of pain. It hurts to put bottles together. It hurts to take them apart. Buckling him into the carseat or stroller is difficult and painful. And snapping all those tiny snaps makes me want to jump out a window. Though I have to admit I fumble almost as much with getting zippers started. But maybe the worst part is that OZL is starting to pull himself up and wants nothing more than to hold on to my fingers and pull himself up to standing. And how can I say no? He's so proud of himself and I am proud of him too. I want to help him learn and play with him and I don't want it to hurt anymore.

I've tried anti-inflammatories. I've tried other pain killers. I've tried ice. I've tried hot water. I've tried epsom salts. I even tried taping some of my fingers together to remind myself to try to give my hands a rest (though resting isn't very practical since I'm alone with OZL pretty much all day every day). None of it has worked, so I finally broke down and went to see my rheumatologist this morning.

Honestly I was sort of hoping for a diagnosis of tendinitis or carpal tunnel or something like that - both of which can be common post-partum and while doing repetitive tasks caring for a baby. But, no, it's my RA. My knuckles are swollen and inflamed which is causing the hand pain. Despite giving up breastfeeding to go back on my medications, my RA is still not completely under control. 

This information is both depressing and frustrating. Because we do want OZL to have a sibling in the not-too-distant future, my options for treatment are actually quite limited. Though I know it did help control my RA in the past, I've made the decision to stay off methotrexate until I am finished having babies. Methotrexate takes a while to start working and then takes at least 6 months to get out of your system before it is safe to get pregnant, and that's a timeline I just can't commit to right now. Not to mention that weaning off it in the first place is an experience I'd rather not have to repeat. And I'm pretty sure I've made my personal feelings about taking prednisone abundantly clear.

So, for the time being, I've opted for prednisone injections straight into my knuckle joints. Which, as you can probably imagine, is about as much fun as it sounds like. I got them in both hands this afternoon. They are supposed to take effect in a day or two and last two or three months. Hopefully this will help me regain the use of my hands for taking care of OZL (and, you know, anything else I might want/need to do).

In the meantime, now that we know my RA isn't being completely controlled despite all the meds I'm on, we may need to seriously consider how long we want to wait before trying for another baby. It seems completely crazy to think about having a second one when I'm already having trouble caring for the first one, but the reality is that my RA is uncontrolled and will probably continue to get worse. So the longer we wait, the harder the second one will be.

And I guess I have to acknowledge that a third one just may not be physically possible for me.

Secret Post #2: This Time It Was My Choice

NOTE: This post is part of a series that I wrote in secret during the months before I announced my pregnancy. The series chronicles my pregnancy journey: from weaning off my RA meds, to trying to conceive, to searching for helpful advice and information, to discovering I was pregnant, to the ups and downs of my first trimester. You can read all the posts in this series here.

This Post Written April 29, 2011

April has been a total whirlwind of good and bad, happy and sad. In the post I actually published today, I was totally honest when I explained how I have been feeling lately - I'm achy! Extremely achy, actually. And I've been dealing with quite a bit more fatigue than I was a few months ago. However, I was also honest in my post today when I said, despite the extra pain and fatigue, I'm really doing ok with it. I'm happy and excited for my wedding and I'm doing a really good job of making sure I rest enough to (at least hopefully!) prevent me from crashing any harder.

But I wasn't completely honest today about why I'm feeling extra achy and tired. Yes, I traveled a lot last week, and that has a lot to do with it. But I am also fairly certain that part of the extra trouble is from my incompletely treated RA. Which, actually, is another reason that I am ok with the extra pain and fatigue I've been experiencing - I know I'm going through it so that APL and I can achieve our dream of starting a family. And if that's not for a good cause, then I don't know what is!

I can feel a pretty major difference in my body since I started coming off my meds a few months ago.
Honestly, I was most surprised by the difference I felt when I stopped taking methotrexate. I stopped that one first - because it needs to be out of your system the longest before it is safe to get pregnant. Before stopping, I knew methotrexate was helping to prevent long-term damage of my joints, but I really didn't think that it was doing anything to help me feel better on a day-to-day basis. And I was wrong.

I remember when I first got diagnosed with RA, my rheumatologist had me only on methotrexate for about a month, and I remember feeling really frustrated that it wasn't helping me feel better at all. In fact, as we moved along and tried other drugs that did help me on a day-to-day basis (prednisone, Remicade, Enbrel,) I became increasingly annoyed about having to take the methotrexate at all, because I only noticed bad side effects from it - hair loss, tooth decay, potential liver damage requiring lab tests every couple of months, extra fatigue for a day or two after taking the dose, etc.

So when I came off the methotrexate I was actually quite surprised when I did notice a difference in my body. Almost immediately I felt just a tiny bit more achy for no apparent reason - like I had worked out a little too hard or not rested quite enough, but I hadn't actually done those things. Apparently the methotrexate had been doing something to help me on a day-to-day basis. Although I obviously haven't loved dealing with the extra pain and fatigue lately, I actually do appreciate knowing that the methotrexate really was helping me. I think I'll feel better about the drug when I finally start taking it again.

Before we decided we wanted to try to start a family after the wedding, I was depending on a bunch of meds to control my RA. Now every day that goes by I'm a little further away from the combined benefits those meds were giving me. Overall I would say, despite a little extra pain and fatigue, things are going pretty well with the process of stopping my meds (so far! knock on wood!).

The weirdest part for me has been a slight feeling of instability. (I'm not quite sure how to explain this, so please bear with me.) When I first got diagnosed with RA, aside from a lot of horrible pain and extreme fatigue, one of the worst things I had to deal with was instability - I felt like I had zero idea what my body was going to do next. I didn't know what I would have to deal with tomorrow, and dealing with that every day made me lose a lot of trust in my body.

Since that time it has been a massive up and down battle to try to re-gain some stability in my life and my body. For example, when I first went on the Remicade and it felt like it was working, I gained a little stability back, but then I lost it again when it turned out the Remicade wasn't working. Thankfully, I have steadily been re-gaining my stability since I started with Enbrel - which, believe it or not, was almost exactly two years ago! Getting to a point where my RA treatment was working and felt stable was really important for me, because - obviously in addition to the fact that I was physically feeling a lot better - it helped me to re-gain some trust in my body. While I never got to a point where I felt like I could control my body, at least I had reached a point where I felt like I knew what to expect, which was huge relief.

Since beginning the process of trying to get ready for pregnancy, I have definately lost some of the stability that I worked so hard to gain over the past few years. These days, I don't quite know what to expect. I'm not really sure how my body will continue to behave now that I'm off my meds. That's what I mean by a feeling of instability - I feel at least a little nervous and shaky all the time now, like anything could happen tomorrow.

However, it is definately a different type of instability than I felt when I first got diagnosed with RA. That instability came from a place of shock and fear and despair and denial over the loss of control of my own body. The instability I feel today is totally different because it is my choice. I was able to consider all the pros and cons before accepting this instability into my life and, with APL's help, I now have the tools to deal with it. This instability is an investment in the future of my family.

And let me tell you - that makes all the difference.

Hair

I've been suspicious about this problem for a couple of weeks. At first, I tried to convince myself that I was overreacting. That I was just noticing something totally normal or I was just under too much stress. But, after watching the problem for a couple of weeks, I'm pretty certain it is not normal. I'm pretty certain something is wrong.

My hair is falling out. 

Not in huge quantities - I'm not going to be bald by next week or anything like that. But certainly a lot more hair is falling out than should be or usually does. Every time I touch my hair I come away with what seems like a handful. And more hair has been falling out in one shower than usually falls out in a week.

I know that a lot of the drugs I am on - particularly methotrexate - can be responsible for hair loss. Luckily, I have am appointment with my rheumatologist this upcoming week, so I can ask him what he thinks is causing it and what we can do about it. Hopefully we can find a way to stop it before it really becomes a problem.

In the meantime, it obviously doesn't make me feel particularly fantastic. Especially considering I have cold sores in both of my lips right now. My lips are a bloody mess - and not the cute, English slang kind of "bloody." The ugly, blood kind of bloody.

I know neither of these things are the end of the world. And I am very grateful that it isn't worse.  The cold sores are on my lips are not even that noticeable and no one but me can see the hair loss. But when I'm already tired and achy and a little bit grumpy, it can seem like a lot to bear. Especially when I can't help but picture myself bald and bloody on my wedding day. ~;o(

What I Learned From 11-Year-Old Caitlin

Remember that time I was 27 years old, went to the dentist, and had five cavities? And I determined it was because I sucked at being an adult and just hadn't been taking good enough care of my teeth? Yeah, about that.....

My cousin just sent me an article and (you guessed it!!) apparently several of the drugs that I am on for my RA (or have been on over the past couple of years) can lead to tooth decay. I haven't researched the issue myself, but the article is posted on The Arthritis Foundation website. Here is an excerpt:

One of the side effects of methotrexate, even at low doses, is dry mouth. Saliva in the mouth has an anti-bacterial effect. Loss of the cleansing properties of saliva can lead to the buildup of bacteria, and thus, to tooth decay

Prednisone also has the potential side effect of xerostomia (dry mouth). Prednisone is also a glucocorticoid, which can increase not only blood surgar levels, but the levels of sugar in existing saliva - which some dentists will attribute to an increased risk of tooth decay. In addition, prednisone can cause a leeching of certain minerals from bone - most notably, calcium - leading to a potential thinning of bone, including in the mouth. Thus, on many fronts, the side effects of prednisone can cause havoc to your oral health.

Here are some other drugs that can contribute to dry mouth: Naproxen, Motrin, Piroxicam, Diflusinal and most antihistimines.   

May I be the first to say: What. The. HELL?? My RA drugs are affecting my teeth??? It makes me want to get pretty mad about it. When will the surprises stop?? Is there any way that this disease is not going to affect my life?? What are you supposed to do when the cure is worse than the disease?? Why do I have to deal with all of this every single day of my life???

Bu then I discovered that the article is from a blog written by the mother of Caitlin,  a young girl who has been suffering from severe JRA since she was three. I just watched a heart-wrenching video about Caitlin getting her hip replacement at age 11. (But I was glad to find the video through a post her mom wrote which says, a year after the hip replacement, Caitlin is doing well and does not need her second hip replaced yet.) 

I have enough trouble adjusting to RA as an adult - I can't even image what it would be like to deal with it as a child. But Caitlin is a strong and inspirational little girl - she talks with poise and composure and acceptance about her condition in the video. She reminds me that I'm supposed to be moving forward, not looking back and grumbling.  I really hope to be able to learn more from Caitlin in the future, so I've added her mom's blog to my favorites (you can access it under "Resources"). In the meantime, I want to thank Caitlin for giving me perspective.  I hope she knows how amazing and strong she is.

Be Happy Toes!!!

Today my right knee is hurting a lot, but this doesn't bother me so much. There's plenty of reasons why my knee might hurt. And I'm obviously used to a little joint pain.

What does worry me a little bit is that my left toes are hurting more than ordinary today. A lot more than ordinary. And my left toes are exactly where my RA started.

I've been off prednisone for almost a week now, but this pain in my left toes doesn't seem to bode well for ENBREL and methotexate on their own.

I guess only time will tell for sure. Be happy toes!! Pretty please?

Goodbye, Prednisone!!

As instructed by my rheumatologist last week, I just took my (hopefully) last ever dose of prednisone! Goodbye, prednisone!!

Hopefully I'll also be saying goodbye to high blood pressure, insomnia, medication weight gain, and (not going to lie, perhaps most importantly) fat face!!

Now all I have to do is keep my fingers crossed (if I can!) that the ENBREL and methotrexate can stand alone in keeping my RA pain under control. Otherwise its back to the drawing board. Wish me luck!

Does Not Compute

RA = massive amounts of joint pain

Sucks a lot, but at least makes sense

Massive amounts of joint pain = complicated treatment

Fair enough.

Complicated treatment = Methotrexate (six or eight pills a week for over a year) + Remicade (infusions tried for six months) + ENBREL (currently once a week injection) + Prednisone (to help with pain while we figure out the rest of it)

Wow. That's a lot of drugs. Not to mention the ones I am on to help with the emotional aspects of all this. Oy.

Prednisone = Inflammation reduction + fat face + 30 pound weight gain

Yuck.

Prednisone + Reduced ability to exercise + 30 pound weight gain = High blood pressure at age 26

Yuck.

High blood pressure at age 26 = Need to take meds to control blood pressure

Like I needed some more meds to add to my crazy cocktail!! But I understand the need.

Meds to control blood pressure = hacking cough

Wait....what? My blood pressure meds are giving me a....hacking cough??

DOES NOT COMPUTE!!!

46 Needles & Me

Much to my displeasure, I spend a fair amount of time getting friendly with needles. I stab myself once a week with ENBREL and I am considering the option of taking my methotrexate by injection too. I also have to get blood drawn for my rheumatologist once a month to make sure the methotrexate isn’t destroying my liver.

Those monthly blood tests, in addition to other tests occasionally ordered by my primary care doctor, have had me in and out of the University Lab at least once a month for more than a year now. Since it is usually the same guy drawing my blood, as I’ve mentioned before we’ve gotten to know each other and become pretty good friends (which is a big improvement from how I used to treat lab techs in my childhood!) Favorite Lab Man always does a pain-free job of drawing my blood, hardly ever leaves a bruise, and is super-sweet to me.

When I went to visit Favorite Lab Man for blood tests last week he asked me how I was doing and I told him honestly about the trouble I have been having with my hands. He asked me if I had ever considered acupuncture. I told him I had thought about it, but never really done it. Then he recommended an acupuncturist to me that had treated him and also used to be a nurse at Student Health. He swore by her treatment and said she really knew what she was doing. He said didn’t know if acupuncture could help me, but if it could she would be the one to see.

So I took Favorite Lab Man’s advice and I had my first acupuncture appointment this morning. The acupuncturist was a super-nice lady and seemed very knowledgeable. She told me that she actually treats another patient, an elderly woman, who has RA and that the acupuncture really seems to help the patient. Apparently this patient used to take ENBREL every 10 days but now she only needs it every 15. She said she has also treated other patients with autoimmune issues, so she said it was worth a try to see if it would help me.

And was it ever weird!!! It was a really strange combination of modern and ancient medicines. In total she stuck about 46 tiny, single-use needles into my body. The needles themselves didn’t really hurt, but sometimes they caused this weird, zinging sensation. She stuck most of the needles in the backs of my hands and my fingers to help with my hand pain. Then she hooked a couple of the needles in my hands to this little machine that sent a small electric current between the needles, which felt really weird. (Not going to lie, it reminded me of the theaton thingy in the Scientology episode of South Park) But, on other needles on my hands, she stuck little balls of herbs at the top and lit them on fire like incense. So there I was, with 20 needles in my hands, some hooked up to electricity and some smoking some ancient herbs.

She also stuck some needles in my knees, shins, and into my feet. She told me that while Western medicine sees RA as an autoimmune disease, Chinese medicine views it as a “dampness” in my body that needs to be pushed out. So the needles in my legs and feet were supposed to work on that. She also asked me how I slept and I told her honestly never very well. So then she even stuck a few needles in my scalp and in my ears that she said would help me sleep.

I can’t honestly say whether or not the acupuncture treatment worked. For one thing, she told me that sometimes you don’t see results until after two or three treatments. And I still have some pain in my hands – but obviously I am typing this post and I am not crying so maybe that is some sort of improvement. Who knows. For now I am keeping an open mind about acupuncture and going to see her again next Friday. We’ll see what happens.

To Syringe or Not to Syringe?

On Wednesday I had an appointment with my rheumatologist. I think it may have been the first time ever that I have been able to report to him that I am actually doing pretty ok. I mean, my joints still hurt every day, but usually they don’t hurt as much as they did a year ago. I still wish I had more energy, but at least I have enough energy to get myself out of bed and back to class. I still get tired way faster than everyone else my age, but at least I have enough stamina now to do some of the things I enjoy. I know “ok” might not sound like a victory, but it sort of feels like one to me. Compared to the last year of my life (which, let’s face it, sucked a very great deal), I’m actually pretty happy with the way things are going right now.

Don’t get me wrong – I still have pretty bad days once in a while. Yesterday was one of them. On top of me still feeling quite tired and sore from the wedding last weekend, it was a really long day of work and class. There were some really good things about yesterday: I got to see a classmate’s very first ultrasound and meet another classmate’s seven-month-old little girl, which was wonderful. I love babies and I am so happy and excited for both of them. But, considering my current level of exhaustion and soreness, it really got me thinking about how I would ever be able to be a mom myself, feeling like this. Later that evening, I was trying to help APL change the sheets on our bed, but my hands hurt so much I could barely pull the sheet over the corner of the mattress. Combined with my worrying from earlier, the fact that I was having trouble doing such a little thing made me burst into tears. I cried for at least half an hour over how unfair everything felt at that moment.

So, while things are certainly better than they used to be, I have to admit that I still have a lot more trouble with pain and fatigue than I would ultimately like. When I met with the rheumatologist the other day, I told him as much. He said that there are still some changes we can make with my meds that may cause additional improvement. On the one hand, I don’t really want to mess with my meds too much, since for the most part I am doing ok and I am mostly able to get back to my own life. I really wouldn’t want to make a change that might make things worse. But, on the other hand, less pain and more energy would really make a big improvement in my life.

Unfortunately, I’m not sure that I’m all that thrilled with the next step my rhematologist suggested: injections of methotrexate. By syringe.

Methotrexate is basically the RA drug. The way I understand it, if you have RA, you are pretty much on methotrexate. It prevents joint destruction and it usually compliments the other treatments, like Remicade and ENBREL. I have been on it pretty much since I was diagnosed. Currently, I take six pills of methotrexate once a week. But, since people’s bodies absorb pills in different ways, it makes sense that an injection might produce better results. Still…that syringe.

Now, I know I have injected myself with ENBREL 17 times already. But ENBREL comes in an auto-injector, like a big fat pen. I just push it against my thigh and press a big purple button. Then I hold my breath for the 15 seconds it takes for the medicine to be delivered. (Quite honestly, it is the longest 15 seconds of my life every single week!) But all I have to do is push a button. I never even see the needle.

Methotrexate doesn’t come in an auto-injector. You have to use a regular syringe. Which means obvious needles. First you have to stick the needle in the bottle and fill the syringe with the right amount of medicine. Then you have to stick the needle into your leg. Then, as I understand it, you have to pull back on the stopper a tiny bit to make sure you didn’t hit a blood vessel. And then you have to plunge the stopper yourself to dispense the medicine. It’s a pretty different process than simply pressing a big purple button. And much more needle-intensive.

Ultimately, I know that I can handle the syringe (or make myself handle the syringe) if it is really going to make me feel better. But it still gives me the jibblies. For the time being I am sticking with the pills. When I run out of pills, I’m hoping I’ll feel brave enough to try the syringe and that it will be worth the extra trouble.

Harry Potter & Me (And the IV)

Since the purpose of Remicade is to confuse your immune system, you aren’t allowed to get an infusion of Remicade if your immune system is currently trying to fight off an infection or illness. So when I got sick last week, I was pretty concerned that I wouldn’t get well in time to get my fifth dose of Remicade.

Luckily, the doctors decided that my cough had subsided enough and I got my fifth dose yesterday. Although it took them two tries to place the IV, the rest of the treatment thankfully went off without a hitch. I watched Harry Potter and the Chamber of Secrets while I was there. I love Harry Potter! It always cheers me up.

My rheumatologist also came down during my treatment to examine my joints and talk about my treatment. This was my second dose of Remicade on the increased dosage, but we decided that it was hard to say whether the increased dosage from last time had actually helped. The past few weeks have been so miserable, what with the saga of my boob wound, getting sick, and having trouble getting out of bed, it’s no wonder I haven’t been feeling that well physically or mentally lately. So I’m going to try to pay close attention to how I am feeling physically for the next few weeks to see if the extra Remicade is making a difference.

However, even with the extra Remicade, my rheumatologist concluded that I’m still experiencing moderate disease activity. So we’re going to try adding another medication: doxycycline. It’s actually an antibiotic, but apparently when taken regularly it can help with the treatment of RA. So we’re going to try that for a couple of months. However, it can increase my risk of [WARNING: The remainder of this sentence may contain too much information for you] yeast infections, so if I get a persistent yeast infection then this treatment is a no go.

I’m also happy that the rheumatologist decided to decrease my dose of methotrexate, as that stuff seems to make me really tired and I’ve had so much trouble with fatigue lately. So, all in all, I’m pretty happy with how the visit went. And it’s nice to have some relatively good news, I think.

Sleep Schedule Fail

On Tuesday I called the doctor to see how I ought to be handling a cold with my compromised immune system. They didn’t call back. On Wednesday I called again. By the time they called me back on Wednesday night and told me I should come in, I couldn’t get an appointment until Thursday afternoon. When I finally went in the doctor did a strep test and a CBC (complete blood count) and determined that it really was nothing more than the common cold.

But having even just the common cold on top of the aches, pains and fatigue of RA has really sucked and, I think, brought me to my lowest point yet over the last delightful ten months. I feel just awful – both physically and mentally. My whole body hurts, I have literally zero energy, and I’ve been pretty bummed out.

As a result I’ve been sleeping a lot. And we’re talking college-style sleep-through-half-the-day sleeping. Only in college I’d sleep through the whole morning because I stayed up until 3 or 4 am the night before. Now I’m going to bed around 11:00pm and still sleeping until after noon. Over the weekend I slept until after 1:00pm both days.

APL and I decided that I might start feeling a little bit better if I could get myself on a more regular sleep schedule. So we decided to set me an alarm this morning. Last night we went to bed after 1:00am, because APL went to a concert and I stayed up watching a movie and waiting for him to get home. (Surprise, surprise I didn’t feel well enough to go to the concert with him.) So we decided to start slow. We set my alarm this morning for 11:00am.

When it went off, I proceeded to hit snooze for an hour. At noon, I looked over at the alarm and decided to get up. So I turned the alarm off. Then next thing I knew it was 2:15pm and I was still in bed. I’m blaming it on the combination of the dose of methotrexate and NyQuil I took last night, but man. Talk about failing in my attempt to get on a normal sleep schedule.

The sad thing is that it doesn’t really matter that I slept most of the day away, because I didn’t have any plans anyhow. I guess I can always try to get up at a reasonable hour again tomorrow.

Some Days

This morning I woke up crying. I can’t tell you why because I’m not sure I know exactly myself. It probably had something to do with the fact that I’ve felt icky and exhausted for many days in a row now. And maybe the fact that I have been to the doctor’s office four times in the last week and all of those visits were extremely unpleasant. And maybe the fact that today is Sunday, the day I take my dose of methotrexate (which usually makes me exhausted), and I can’t imagine feeling any more exhausted than I already do right now. And I just woke up.

Some days with RA are not very nice days.

Although, I guess if I have to wake up crying I’m at least glad that I did it on a weekend when APL is home. He brought me a chai in bed and I feel a little bit better now.