Monday, December 21, 2009

Add Another One To The List

There’s always something, isn’t there?

It’s the holiday season, and lupus and rheumatoid arthritis are the gifts that keep on giving…

I had my six-month rheumatologist appointment on Friday.

The more that I think about it, I’ve had pretty constant disease activity since I was in the hospital, and maybe even before. And this isn’t shocking, considering that the hospital is a pretty horrible place to try and survive in, even if you’re not dying. No sleep, crappy food (if you even feel like eating), and being constantly poked, prodded, and questioned by strangers. The hospital is the ultimate lack of control.

For instance, I can’t quite forget when a hot, male orderly came into my room, asking if I had paged the nurse. I reluctantly told him that I had to use the bathroom. He asked if I could get up and walk to the bathroom or if I preferred a bedside commode. I opted for the bedside commode because I was in no condition to walk anywhere at that point. I remember thinking, nothing makes you feel eighty years old like a bedside commode… (Obviously, my mind must always be on “thinking of good lines for blogging” mode)

Anyway, my doctor was so charming, he squirreled me into getting the H1N1 vaccine. I said I wouldn’t do it. I said I would refuse. But he offered up, unprompted, “I got it. And I made my wife and daughter get it” (I didn’t know he had a wife and daughter - maybe he just made them up to butter me up). I was tempted to say, “Well, they don’t have whacked out immune systems.” But I didn’t. I made the decision to get the shot. And I’m not suggesting that anyone with similar illnesses get it. I think it’s a personal decision. My reporting this is just that. I’m not advocating one way or another, although I know there are many people out there who have very strong opinions on both sides of the issue. I found myself looking and feeling my arm, making sure that it didn’t look weird, or hurt more than I thought it should. I kept the injection site covered with a band-aid for several days. All seems to be fine so far…

So I am officially off of CellCept. But I am starting Methotrexate (MTX) next week. I have avoided MTX and am not thrilled about this change. But…

Based on the symptoms I am having, my rheumatologist and I agreed that the CellCept seems to have plateaued – when I had to be off of the CellCept for two weeks during and after the “pneumovax debacle,” I didn’t know if I’d be able to function without the CellCept, but I was fine – and that the rheumatoid arthritis has taken the “upper hand.” My right hip is a daily pain, and my elbows are painful, swollen, and don’t fully extend anymore, without great pain and effort. This was a symptom I was having when I first started seeing my rheum. Reverting back isn’t a comforting feeling.

I’m starting on oral MTX, which only has to be taken once a week. My doctor seemed jazzed about the shot form. But I protested. This is the one thing I’ve been trying to avoid all along. I just don’t think I can inject myself. And there has to be a point where I put my foot down, and say, “I just won’t do that.” My doctor thought it was kind of funny that the mere thought of giving myself a shot made me nervous, given everything I’ve been through. But ultimately, he conceded. He said that if I don’t do well with the oral form, we will try the shot, and we will try and coordinate with the student health center so I can be given the shot once a week and won’t have to do it myself. Not so sure I really want to trust the student health center with shooting me up with anything, but at least the guy is trying…

Plus, given my more than occasional blue lips and fingernails, my rheum confirmed that it looks like I’ve acquired a secondary condition to both lupus and rheumatoid arthritis: Raynaud’s (phenomenon). Fabulous. Just add another one to the list.

It’s funny because the nurse who met with me to go over MTX said, “If you have a fever of 100 or more, and there is any sign of infection, you have to stop taking the medication and call us immediately.” Then she said, “But you know, a sniffle is not an infection.” And I’m thinking to myself, you just told me to be hyper vigilant, and now you’re telling me not to overreact. Makes total sense.

A lot happened at this appointment. But I feel oddly okay with both of the decisions I made. My doctor was cracking jokes. His demeanor was so much different than my very first appointment with him in January 2008. There was a point in time when I considered switching doctors. But this appointment put me at ease. I asked if MTX was truly the best option at this point. He said yes. And given that we haven’t tried everything yet, I feel like I have to try things at least once. And, in some ways, I’m happy to be trying a new med because we’ve kept things status quo for a while, without seeing any marked improvement. Plus, we I think we’ve been fairly liberal in terms of treatment to this point. My rheum even thinks that some of my recent gastrointestinal issues may be a result of having been on the CellCept for as long as I was. So despite all of the bad things I’ve heard about MTX, I have to be positive and think that it will hopefully work for me and that change is a good thing…

More than anything, I’m amazed at how far the relationship with my doctor has come. And I appreciate that we both took the time and effort to feel each other out and get to know each other, over the last almost two years. I feel at ease with my decisions because I felt comfortable asking the important questions, and my doctor openly and willingly answered them.

I’m not sure whether it was the holiday spirit, eggnog, or something else that put a spring in my doctor’s step, but whatever it was, I liked it.

I’m sure I’ll have plenty of updates once I’ve started MTX, and I’m a bit relieved that I’ll be at my parents’ when I start it. So, for now, I’m off…

Happy holidays, everyone! Catch you in 2010!


  1. If it's any comfort, Raynaud's doesn't usually make major changes to your life. For me, it means I have slippers all over the house (because my feet are the worst affected part of me) and I MUST have a scarf over my nose and cheekbones if it's under 40 degrees.

    Other than that, the only time I can think of it being a nuisance is re-arranging the freezer, which I have to do in stages or make someone else do.

    Hopefully, you'll find yours is no more of a problem for you than mine is for me. I totally dig about the upset of having a 'new' diagnosis to add to the list, though. Mine is at over a dozen, and I always seem to forget something off the list. It's distressing when it gets longer again, even though that's happened a bunch of times and you'd think I'd get used to it...


  2. Bon voyage and good luck with the medication change. So sorry to hear about the Raynaud's.

    Happy new year!

  3. Hi Leslie,

    Found your blog while searching for lupus-related stuff...

    Like you, I was diagnosed with lupus at age 22 (I'm 29 now). I also have polymyositis, essentially meaning that my joints AND muscles are all kinds of screwed up...) I've been up and down the East Coast to all kinds of high-level places, to no avail. I've also run the gamut of treatments, from conventional meds (I'm currently on methotrexate and methylpred), acupuncture, herbals, you name it.

    Anyways, regarding the Raynaud's - which I too have - I've found that a VERY minimal dose of Norvasc does wonders! I take 4 mg a day, and it keeps me sane in the winter months; before, I would feel nauseus and like knives were stabbing me in the gut if it were 30 degrees or lower. Of course I also layer up (a thin short-sleeved shirt under my sweaters REALLY helps keep the core body temp up), as well as insulated gloves, a good thick coat, a hat and scarf, etc. I guess it varies person to person, but overall the Raynaud's shouldn't be TOO bad, in the big picture :-)

  4. Ah, I just started the Methotrexate 4 weeks ago. Had hoped we wouldn't have to, but although plaquenil was working really well for me I have weird burning headaches on it. After trying being off of anything but otc nsaids daily we decided that didn't work either. THe MTX hasn't been awful so far, although i'm pretty wiped, a bit nauseuous, and no appetite for 2 - 2.5 days afterward. My doc had me take it on Fridays so that my main job would be less effected. Anyway, looking forward to trading notes with you on the MTX - I don't know anyone else on it who hasn't been on it forever.

  5. Good luck with the mtx. I've been taking it for 15 years and have done really well after a couple weeks of nausea at the very beginning. Glad you'll be with your family when you start it.

    I feel you on the lack of dignity in the hospital - especially around cute doctors! If the nurse or doc is cute, it's pretty much a certainty that I'm always looking my absolute worst and doing the most embarrassing thing possible.

  6. I really hope the mtx will help you and that you don't get any of the dreaded side effects. I didn't thank goodness. I did forget that although my elbows did not get swollen ever, they were painful sometimes to lean on. I did have small nodules in them for some years but they've gone away.

  7. I m glad you get to be home and that the visit went well love


  8. Sara Gorman, here, of "Despite Lupus" - 9 years and counting with systemic lupus...diagnosed at the age of 26.

    Best of luck with the new medication! Switching meds always gave me hope (and usually, with good results), so here's hoping MXT works wonders. Re: the shots - I, too, was reluctant to administer daily Lovenox shots to myself, but after you do the first prick, you feel like a pro. It seems like such a daunting proposition, but you get so accustomed to it, you don't even think of it as a needle!

    And your comments about your doctor sound like they were taken directly from chapter 4 of my happy to hear that someone else feels the same about sticking it out with their doctor.

    Take care and thanks for adding my blog to your blog roll!

  9. i slammed my hand down on my desk and swore when i saw "raynaud's." are there any tests that they do to confirm the diagnosis? if you can afford it, i highly recommend getting massages. they can improve your circulation a lot and i have not found a reason why someone with lupus shouldn't get massages. joint mobilizations are a no when it comes to rheumatoid arthritis, but that's not a big deal. if there is a massage school near you they might offer student massages, mine does. and, the next time you are in chicago, you can have one from me!

    i am not getting any flu vaccines. they have not done proper testing of h1n1 on anyone with autoimmune diseases, or pregnant women, and yet they are telling people it is safe. when i see ads recommending pregnant women get the vaccine i feel like defacing them. but then again, the same is true for products labeled gluten free which actually aren't...

    i hope the new medicine has good results for you. keep your spirits up and remember to message me sometime!

    -jenn p

  10. I've been taking mtx since September. The first couple weeks were rough, but I don't have any side effects now.

    Are you being treated for the Raynauds? There are some migraine medicines that make Raynauds worse, and there are some meds that can help with Raynauds.

    Good luck!

  11. I've been on MTX over 15 years and the pills made me feel awful. It took me half of the week to get over them so I went for the shots and it made all the difference.
    I thought it was something the Dr had to do (medical mystique I guess) and none of the Drs ever told me anything different. But honestly, after 700 Dr visits with paying for parking and the receptionist from hell (Israel really) and Canadian winters, let me tell you I am ecstatically happy to do it myself, at home.
    And I was one of those people who couldn't even imagine using eye drops before lol. Now I have Sjogrens on the side with my RA so that's also a taboo that is long gone