Saturday, February 6, 2010

The Sacrifices We Make To The Medication Gods

I’ve been a bit absent from blogging lately because I’ve been waiting to get some closure on some issues I’ve had with Methotrexate (MTX).

MTX is the first medication from which I’ve seen tangible improvements in my arthritis. My pain is greatly diminished, and my joint mobility has visibly increased. So you’re probably wondering, is there a “but”? Yes, unfortunately, there is…

My rheumatologist’s office called me a few weeks ago to tell me that my white blood cell (WBC) count was low. Then they called last week to tell me that my WBC count was still low and my liver levels were up.

So off the MTX I went. A week and a half off of it, my elbows won’t bend all the way, my fingers are stiff and swollen, and my right hip is back to hurting on a daily basis.

I’m not going to lie. Being on MTX hasn’t been all butterflies and rainbows. There’s the tell tale nausea and dizziness. And I’ve gotten to a point where I wonder whether sleeping my life away is worth not being in pain. It causes the kind of fatigue that no amount of coffee can kill, the kind of fatigue that you have to submit to because it’s too great to fight it.

That’s why this situation has been all the more frustrating. Aside from marked fatigue, I have felt pretty good. So why couldn’t things, just once, go smoothly? It’s so frustrating to find a drug that actually works in some ways, but is simultaneously killing you…

So I’ve been going to the hospital once a week for the past six weeks to get my labs drawn. That’s not the ideal thing to try and diminish the primacy of illness in your life. It gets really old, really quick.

(And to add insult to injury, my doctor’s office somehow managed to give me the wrong lab requisition form, so I had been getting the incorrect labs done for several weeks. But that’s a whole other story…)

I am certainly not someone who loves to be on meds, especially the heavy duty ones I am currently taking. But I know that I wouldn’t be functional without them. Every time I have a flare, I’m reminded of just how bad things can get, and the meds seem like a small price to pay.

And oh, there are the sacrifices that come with prednisone. But the thing is, as much as I hate the side effects, I am always reminded of its wonders when I’m experiencing crippling pain – and I finally have to concede and take it. A few hours after I take it, I no longer feel like my body is made of lead. I know that prednisone doesn’t work this way for most people, but for me, I can take 10 mg. every once in awhile and I seem to be able to fool my body into thinking that it’s going to be getting more soon, but it doesn’t. And I always feel like an immobilizing weight has been lifted off my shoulders.

It also seems to me that any medication that says it will cause lack of appetite has that effect on me. Or causes really weird food cravings like my fixation with baked Cheetos, boxed macaroni and cheese, and orange juice – viva la orange – which thankfully, has finally gotten to the point where the combination is no longer appetizing and just makes me nauseous. Because that was a weird phase for awhile.

And lately, I have been so spacey. I can only hope that blaming it on MTX is truly the problem. In my first few weeks on MTX, I screwed up the appointment days/times of four appointments. That is not like me at all. But maybe my brain has ceased to function when it is not working on overdrive to cope with pain.

What I wish healthy people understood, is that none of these drugs are a cure. Every medication has its pros and cons, and I don’t think it’s ever an easy decision to make to start a new medication, especially one that is more aggressive than anything else you’ve tried.

It’s like, if the disease doesn’t kill you, the medication will. But society doesn’t view people who are on a lot of medication, for whatever reason, in a positive light. I was particularly frustrated watching “The Biggest Loser” a few weeks ago. The main doctor on the show made the main goal of achieving health to be being on as few medications as possible. It’s a nice thought, but in reality…

And all everyone seems to want to know is when I’m getting off MTX. I don’t know, and honestly, right now, I don’t really care. Yes, I would very much like to get off the meds, all of them, but right now, to me, feeling good is more important than some lame goal of banishing as many medications as possible from my medicine cabinet. I need to get my health in a stable place, which it hasn’t been in for the past several years.

I wish I could have the illness disclosure conversation and say that lupus and rheumatoid arthritis rear their ugly head once in awhile, but other than that, they don’t mean much. But that’s not the case. So for right now, for me, living well means taking a bunch of pills everyday in the vain hope that I can lead a semi-normal existence.

I heard from my doctor’s office yesterday that my labs (finally) came back normal. What a relief!

So for now, I’m back on MTX, and redoing labs in two weeks. We’ll see how long this love affair lasts…


  1. Hope you are taking prescription folic acid every day except the day you take the methotrexate. That will help with a few of the side effects. You could try taking some NAC, an antioxidant. I don't know if it works with MTX, but with Immuran it seems to lessen some of the bone marrow effects, so maybe it could help with the white count issue. You can get NAC (N-acetylcistiene sp?) at a GNC store and take one 600 mg pill, 3 times per day for a total of 1800 mg/day. Last, take your MTX at night, perhaps on a Friday night to see if that helps with the fatigue factor. Take it with food, and with some ginger or ginger tea to see if that helps with nausea. It has been the mainstay for my RA for a decade, and although not a cure all, I could not do without it. I once had liver enzyme elevations, but lowered the dose and switched some non-RA meds and this did the trick although one liver enzyme took 7 months to come down. I have since successfully re-increased the mtx dose without a liver enzyme problem. It could require switching NSAIDs and GERD medicines and/or the timing of these medications in relation to when you take your mtx dose. Hope you are able to work something out with it since it seems to help your RA pain and mobility!

  2. I'm glad your labs came back normal. I was really worried when I read that your white cell count was down. Good luck finding the right combo of meds!
    my word verification today is hontsork which i think is hilarious.

  3. I have been on & off Mxt as well myself. I, like you did noticed the lessening of arthritis pain, but ( & there is always a but) the side effects were horrible, I would be constantly nauseated, I would have this weird headache all the time, the fatigue would worsen for me, & my cognitive problems would be noticeably worsen. I was constantly thirsty, & general just felt like I was on the verge of the flu almost. My labs were just like yours. I am conflicted, on the Mtx I have lessened pain from the arthritis, which is wonderful, however the mxt side effects are there. It's hard to try & balance to see which gives you a better chance at having somewhat of life semi-normal.

    I do have a question for you. I have had a B12 deficiency for as long as I can remember. We have done shots, b12 supplement pills, & nothing seems to work. Have you had b12 deficiency?

    I am/was a red-head also, for some reason my has turned white & blonde over the last 2yrs. weird huh.


  4. Chelsea - please tell me more about NOT taking folic acid on the day I take MTX. I was told to take 1000 mg (1 g), but have been taking it everyday, even the day I take MTX.

    Jeremy - Thanks!

    Nicole - I too, since starting MTX, feel as if I'm always just about to come down with something. Haven't had/done anything with B12. I'm sure that's something they looked at in the beginning, but not really sure about it now. And P.S., Red heads are awesome!

  5. I too am intrigued to hear more about not taking the folic on the same day you take the Methotrexate. I hadn't heard that, although I had read a few tings that recommended taking it 8 hours after your MTX or something like that. I've been taking the MTX in the mornings and the folic 8 hours later. Waiting to see how the 2nd round of monthly blood tests show, but I do have the fatigue, and was starting to think I wasn't paying enough attention but am now wondering if it is just causing me to have a loss of cognitive ability.

  6. So I just read a few different things trying to get to the bottom of this, and what I'm reading suggests taking folic acid once a week, not on the same day as MTX. My rheum has me taking 1 g per day... I'm very confused... Anyone that knows anything about this, please weigh in.

  7. Managing this disease -- the pain, the drugs, the various annoying/dangerous side effects -- can be a full time job by itself. And there are always confusions to throw into the mix. If it helps, my rheumatologist told me to take folic acid once a day, period, while I was on MTX. From all I've read across the rheuma blogosphere, that's the standard dosage/frequency. Here's hoping that it will continue to work for you and keep your pain down to a gentle growl. And I hope the daily fatigue lets up, too. These are not easy things to deal with while keeping up with a busy life at the same time. You're a trooper, Leslie, and an inspiration. Best to you.

  8. i wish i had something to weigh in on the medications. somedays i wouldn't mind something if it might help me to feel less of a fog or more energy or be able to eat in a restaurant.

    have you looked into massage? it is good for arthritis and raynaud's and there are no contraindications for lupus that i have heard of. if you can find an LMT who has experience with people with RA i highly recommend giving it a try, even if you can only afford a once in a while treatment.

    meanwhile, i will take all of my vitamins and eat my gluten free chex.

    take care and feel better.

  9. I just discovered this blog and I'm glad you are starting to feel better!

    I'm a member of ChronicBabe too, and found you through the Patients for a Moment Blog Carnival :)

  10. I have been on MTX for 20+ years and take it by injection (I do it myself) It causes a lot less in the way of gastro and nausea side effects and is more bioavailable. It makes a huge difference. The pills were a nightmare for me.

    I think the rheumys are split on the folic dosage - a lot of them just don't bother to mention it. I take 1 mg every day and if I forget for a week I get mouth sores. You know how sometimes you just miss loading one into the pill container for a week - that's how it happens.

    Good luck. I have been on a wide range of drugs and the speed of change with RA just drives me crazy. On the plus side though I have a good combo now and work full time still, and even do a little volunteer work

  11. I took Enbrel for 18 months until I had a BAD reaction to it. It is horrible to give up a medication that had been controlling the symptoms! Even though I didn't like the weekly injections, it worked for me so I got to feel pretty normal most of the time. It is scary to figure out what to take next- whether or not it will work, and what types of new side effects are coming up.

    By the way- prednisone made me crave white cheddar Cheez-its and Hostess powdered sugar donuts. Why can't it make me crave fruits and vegetables???