Friday, August 19, 2011

Sometimes RA changes even the simplest things...

Normally, I don't consider myself as living my life ruled by RA. Yes, I have it and yes, I have to make some modifications to deal with it - but I'm lucky enough to not be in pain all the time or always walk with a limp. So, it was somewhat surprising to me when I realized the other day just how much RA really has taken over/changed certain aspects of my daily life.

As I was getting ready on Tuesday, I thought to myself "Oh, it's shot day - gotta do that before getting dressed." And then on Wednesday before bed, as I was taking my usual meds, I caught myself thinking "Oh, it's methotrexate day - gotta add those pills to the mix." As I thought more about it, I realized Tuesday-Friday is no longer Tuesday, Wednesday, Thursday, Friday. It's shot day, metho day, leucovorin day and shot day again. Kind of funny/surprising how RA has changed even something as simple as the days of the week.

Have you noticed similar simple, yet surprising changes?

Monday, June 13, 2011

Thoughts & Prayers for RA Superbitch's Family

I'm not sure how many of you read Confessions of an RA Superbitch, but I just found out on her Facebook page that she recently passed away. I am in a state of shock. I don't know all of the details, but I assume it was from RA complications. I knew she was having a lot of trouble finding a treatment that would work for her, but I really didn't expect this. I suppose you never really expect it in a 30-something mother. It's scary. It's heart breaking. And it hits way too close to home.

I've worked hard to push all the complications and dangerous medication side effects out of my mind. I figured what good could they do? But this brings them all rushing back. I try not to take things for granted as it is, but this really brings things into focus.

Please, hug your families a little bit closer and hold on a little bit tighter tonight. And send prayers out to RA Superbitch's husband and young son. Rest in peace.

Saturday, April 30, 2011

To metho or not to metho, that is the question...

So when I met with my new rheumatologist last week, he said overall things looked like they were in good shape and he thought my treatment regimen was mostly appropriate. I say "mostly" because at the end of the appointment, he did mention that I might want to consider going back on a low dose of methotrexate to see if that would eliminate the lingering pain I have in my feet.

Right now I'm taking Enbrel (25mg twice a week), Plaquenil (200mg twice a day) and Aleve (1-2 pills twice a day). Most days I do really well (as long as I don't try to run, which, like my old rheumy, this doctor doesn't think is a good idea given my foot erosions). The main lingering issues are that every morning I hobble out of bed as my messed up feet get adjusted to the idea of walking again. And when I walk for more than about 30 minutes, the tootsies start to act up and I have to rest. The last rheumy said I was in remission, and this lingering pain was just something that would always be there due to the foot erosions. This rheumy thinks adding 4 methotrexate each week might clear things up. But, he's leaving it up to me to decide.

What to do, what to do... I was on methotrexate for 6 months when I was first diagnosed (along with prednisone at first, with the addition of Enbrel 3 months in). I got up to 12 pills a week. And the day after I took those pills, I was a useless heap. The fatigue was crushing. It would get a little better each day until I had to take the pills again - rinse, lather, repeat. I also lost a lot of hair and was very self-conscious about that. This doctor says those side effects might not happen with only 4 pills a week. But is it worth the risk? Honestly, I have it pretty good right now. I can do most things that I want to do. Yes, I have to rest more often and there are days when I'm achy as hell... but at least I have a full head of hair! And energy!
(And I can have regular cocktails... a plus for summertime!)

What are your thoughts? Anyone out there taking a low dose of metho in addition to Enbrel? How are the side effects? Love to hear your thoughts!

Tuesday, April 26, 2011

New Article on Pregnancy and Arthritis

Yes, it's been a while. A long while, in fact. In the months that I've been silent, I've sold my house, completed a cross country move (part of the reason why I put pregnancy back on the back burner) and am working on buying a new home here and settling in. It's been a lot, but I'm very happy to be in a sunnier, warmer climate now!

As part of that settling in, I had to find myself a new rheumatologist. Today was my first appointment and as I waited, I picked up a copy of Arthritis Today (AT). They had a very interesting article on arthritis and pregnancy. Unlike some things I've read out there, this article was actually very encouraging and inspiring. I couldn't find the exact article on the AT web site, but if you're interested, you can request a free copy online (go here).

I would also point out that the article seems to be even more up-to-date than the AT web site. For example, they had a list of safe and unsafe meds in the article and unlike the old list on the Web site, plaquenil is now considered safe during pregnancy. The AT article says the jury is still out on biologics, but as I've mentioned before, there are several small studies that have shown no increased risk of birth defects. As biologics become more prevalent (so it seems they are from all the commercials lately!), I hope there will be even more studies to put our minds at ease.

Anyway - just wanted to point out the very helpful AT article. Hope you get a chance to read it!