Posts Tagged methotrexate
GRIT: noun – firmness of character, determination or strength of character
I think some people are born with a natural abundance of grit. I think my grit, the will to persevere and the optimism to keep going is learned, practiced and fickle.
I’m still trying to figure out why sometimes I’m so strong and determined, and why other times I want to pull covers over my head and never leave my bed.
I think something about the beginning of October triggered the ostrich response in me. Suddenly I bounced from I can do anything to I don’t want to do anything anymore.
When I was diagnosed with my RAD new disease back in March, my doctor marked autumn as the time when I could possibly be in remission and we’d be looking at getting off the methotrexate, and later the Enbrel. My September doctor’s appointment was instead met with an increased dosage of methotrexate and the news that the MTX may not even be working yet. Doc’s new goal for remission: spring 2013.
That’s actually kind of good news because it means when it starts working, I’ll feel a lot better. But also, really?!?!
I left the doctor’s appointment feeling fine about it, but then October came and all optimism drained out of me. I was suddenly so, so, so done with MTX day and freaking injections. All things gluten appeared appetizing, dairy seemed impossible to avoid, my vitamins made me nauseous, and I felt like if I even had to look at fish oil again, I’d vomit.
What’s the point? What if it doesn’t go into remission? Am I really going to do all of this forever? I don’t want to have this life. I didn’t ask for this. F#@! RAD and all the stupid S**! that goes with it.
I stopped taking the vitamins and I laxed up on the fish oil. I cheated on my diet. But I kept going on the drugs.
My negativity quickly started to annoy the hell out of me. So there I was, standing over my morning folic acid and fish oil supplements, a wave of nausea overwhelming me, and I snapped. Out of it that is.
My grit was back.
What’s the point? The point couldn’t be more obvious or important – it’s my health. Is it worth trading because I’m a wuss about injections, I hate swallowing pills, and the smell of fish oil is gross? Obviously not.
So I’m staying the course. I’m back on track. (Although I am being a bit more relaxed about supplements for my sanity’s sake.)
I’m thinking March is gonna be a great month for me. I’ll be running my first marathon and hopefully I’ll officially be declared in remission and will be breaking up with methotrexate. Maybe Enbrel and I will even get to say goodbye. Here’s hoping.
In the meantime, I’m happy to report that I think the higher dose of methotrexate is starting to work. My compromised immune system and the changing season has led to a cold, but otherwise I feel great. No joint pain, no feet pain, less fatigue, less trouble sleeping. I even went on a 12 mile run a couple weekends ago.
Now I just have to figure out how to keep my grit from disappearing on me again.
I finally met someone who also has RA. She’s the new pharmacist at my pharmacy. She asked me how I like my methotrexate. I didn’t really know how to answer. “Like” seems like a strong, simple word when talking about any drug with side effects. I would like it more if it was obviously doing its job, but I think most my progress is from the Enbrel.
She told me how she’d had a terrible time on MTX. She had done monthly injections (infusions?) and had many of the side effects that are associated with chemo, including losing her hair. She’s now been switched to two other drugs and taken off the MTX and prednisone.
As nice as it was to meet someone with RA, the encounter left me a bit shaken. Her wrists and hands definitely show the signs of RA. And she hasn’t found a drug regimen that works for her yet, meaning it’s still getting worse.
It’s so important to remember that you are on your own journey. Her experience isn’t mine and doesn’t have to be. It’s so easy to get caught up in the horror stories. To see the disease path as inevitable. But it’s not. It’s really and truly not. If you’ve just been diagnosed, know that there are more drug options, more knowledge on the disease and more medical breakthroughs and research happening than ever before. We have a ways to go until we understand RA or have a cure, but it’s an exciting time in medicine.
Seriously, before you read another blog post or go to another support group, take a deep breath and remind yourself that you ARE a beautiful and unique snowflake (or at least your RA is ;).)
I wish I had had enough foresight to take before and after photos, but unfortunately I didn’t. After two cortisol shots, my left wrist is almost back to normal!
A bit of history: I hadn’t verbalized it, but pre-diagnosis I noticed that there was something odd about the bone of my left wrist – there seemed to be two little boney wrist bumps where there really should have only been one. I didn’t really spend too much time thinking about it. Just a little, huh, that’s funny. Fast forward to my first rheumatologist visit: my doc – “How long have these rheumatoid nodules been here?” me – “Say what?”
Of course, him pointing them out and giving them a scary name only brought them to the forefront of my mind. As I began treatment, they didn’t seem to be going down. Then, several months ago, they seemed, in my mind anyway, to be getting worse. Where there were once two smallish bumps, there were now three merging into one massive, swollen, misshapen wrist.
Whenever I caught a glance of it, my mind immediately leapt to the gloom and doom thinking of, oh my god, the disease is getting worse, treatment’s not working. Then there was a little voice in my head telling me I was embellishing both the severity of the physical deformity and what it meant to my disease prognosis. Both voices were making me a bit crazy.
Needless to say, I started wearing some big bracelets. Out of sight, out of mind, right?
Well, not exactly. My next rheumatologist appointment rolled around and I asked if he thought my left wrist was getting worse in an off-handed way. He didn’t say yes, but he just said, “I’ll shoot medication directly into it, that should work better.” Right. In my doc speak, that means yes.
Before I knew it, he was spraying cold numbing spray on my wrist and poking two massive needles of cortisol into either side. Truly, it didn’t hurt much. If you ever have to do this, it’s really nothing to be afraid of. It was more psychologically painful than anything (that’s right, I’m still not used to needles). The spray feels a bit uncomfortable and my wrist stayed kind of numb for awhile after.
Other bad news (at least I take it this way), my doc and I decided to raise my dose to eight Methotrexate pills per week (up from six) along with weekly injections of Enbrel. It’s hard not to be discouraged, because when I first saw my doctor, he threw out early fall as the time we may be able to have my RA in remission and take me off some drugs. The new time is March 2013. Just in time for my marathon for those of you who are faithful readers.
I’m trying to replace discouragement and disappointment of my progress with optimism. And hey, if I’m going to be on this crazy toxic drug, I might as well be taking enough for it to be effective.
I guess I was a bit shaken after my appointment (I need to stop going to these things alone), because I got into an accident with a parked car while parking at my apartment. I was trying to not use my left wrist, which wasn’t something my doctor told me to do but between the shots and the numbing spray, it felt weird to use it. My car is hurting worse than the other guy’s. For those of you who think you might be getting this procedure, bring a friend to drive you home.
The good news of all this is that my wrist is back to the size and shape of a normal person! No more big bracelets (unless I wanna wear them – they are pretty). No more constant reminder of my disease! Yippee!
First of all, I want to say that I love my rheumy. He is always optimistic about my improvements and the possibilities of getting better. As he assured me during our last visit, “You’re probably 80 percent improved since the first time I saw you, but I promise you will get much better from where you are today.”
Hearing him say how far I’ve come is a great reminder to appreciate your victories instead of focusing on what still isn’t perfect. So I had a small celebration for the realization that it’s been more than a month since I’ve had severe morning stiffness – woohoo!
I’ve made progress, but I have a ways to go. It sucks that I was in the middle of a mild flare when I saw him (still am), which is effecting my feet, wrists, energy and digestive system (or is that the meds, ugh). It made it all the more frightening when he said I have to go down to four methotrexate pills per week from six because the results of my liver function panel weren’t good. I just hope that going down on the meds don’t make my symptoms worse.
I asked him if my current flare might be related to the 10K I ran over Memorial Day weekend, to which he replied, “You can drive yourself crazy trying to figure out what causes what with this disease.” True, and I know that I’m guilty of this.
I explained that pre-diagnosis I was planning on training for a marathon in 2013, so I was worried that running wasn’t good for my body. He encouraged me not to give up that goal, which I love him for. So I guess despite the pain (it usually hurts after, not during running) and fears of making it worse, I’ll keep the goal and see how my training goes.
I also asked him about a weird blood burning sensation I’d had in my arms, especially near my elbows. That one stumped him a bit, but he said it wasn’t a concern unless it was happening frequently. If the symptoms are frequent, one concern is that the Enbrel is causing some sort of neurological side effect (great…). I haven’t had it since then, so I guess I’ll follow the “don’t worry” advice.
One more thing of note, I must of hit a blood vessel or vein giving myself my Enbrel shot last night because it bled, a lot. Eww. Aside from being gross (I’m a total wimp when it comes to these things), it’s fine. It barely even bruised compared to some of my less bloody shots, so go figure.
My takeaway from all this is to try to worry less and really, really try to not let RA rule my life, choices, or mood. Easier said than done, but that’s what I’ll try to do.
EDIT: Just want to add that during my first run after this doctor visit I choked on a bug – it just flew down my throat, gross! And so, another lesson (channel Stewie – What did you learn?): a) don’t run with your mouth open, and b) don’t run at dusk. Let’s hope this isn’t a bad omen for my training, haha.
Along with a mild flare and a new fun symptom (more on that in a minute), I got a call from the nurse saying that my blood tests flagged my liver function panels as high. For me this means dropping down to four doses of methotrexate per week instead of six and following up with another blood test in a month. This scares me, and is especially bad news to get on a day when your symptoms feel worse than they have in awhile. I don’t want to mess with my meds if their helping. Will my symptoms flare? Will it slow remission progress? So many questions.
Also, there’s this sense of I coulda done more to help my liver while it’s working so hard to process these crazy chemo drugs. I haven’t 100 percent abstained from alcohol (my rheumy said five drinks per week was fine) for example. For those of you on mtx, did you cut alcohol completely? Anything else you’re doing to help your liver?
And then there’s this weird feeling I’ve had all day as if the blood in my arms is burning. Like my arms are on fire from the inside out, especially by my elbows. Has anyone experienced anything like this? Is it a vitamin deficiency, med side effect or RA side effect? Or maybe I’m going crazy. I’ll be asking my rheumy tomorrow, so I’ll let you know what he says.
Despite the burning and flare symptoms, I made myself lift some weights and do some yoga. The distraction was great at least, but now it’s back to burning.
I finally had my appointment with my rheumatologist today after a week of going through potential outcomes. I brought my mom with me to have another pair of ears and the support.
The diagnosis was immediate: “You have rheumatoid arthritis.”
I can’t say it didn’t suck to hear it like that. I’d expected a little bit of mystery, deliberation, maybe a “you’re OK.” But I also can’t say I was surprised. I nodded as he went over the reasons why he was sure – positive for rheumatoid factor and anti CCP, bone erosions, clear inflammation.
Then he asked questions that shed a light on ALL of the symptoms I’d been feeling but hadn’t linked to my “sports injury.” Have I been tired? Down? Depressed? Experienced insomnia? Anxiety? Stomach issues? Yes. Yes. Yes. Yes, yes and yes. Majorly. Dry eyes and mouth? No (something I don’t have, yeah!).
I walked away from the appointment with a diagnosis, a plan and an odd sense of hope and relief. My rheumy believes we can get this into “remission” in six months. My rheumy says I’ll be able to have a family in the future if I choose to. My rheumy says that we’ll minimize permanent damages. That there are a lot of good drug options.
So, of course I left the appointment sad, with a million additional questions and overwhelmed at my new drug plan – A cancer drug? Giving myself injectables? But I was also relieved to be doing something and to have a name to put toward everything I’d been feeling.
I promptly filled my prescription for methotrexate, prednisone and folic acid and started the process for getting insurance approval for Enbrel.
I went to happy hour with my mom and close friend, nervously going over the prescription info and bringing my friend up-to-date.
And then, with a ton of trepidation (Is this severe of a treatment really necessary? What about the side effects? Will it make a difference?), I popped those six itty-bitty MTX pills and began my new life. A new life on drugs, but also a new life on the pathway to some sort of relief and recovery.