Tuesday, April 28, 2015

Biologic #3 - Moving to Actemra

After a 2+ month flare, my doctor and I have decided the Humira isn't working anymore. So now we're off to try Actemra. Fortunately for me, they just recently came out with an injectable version (it used to be only an infusion) so I can keep doing it at home.

Let's hope this does the trick. There's also (always) talk about going back on metho, but I'm standing firmly in the "no" camp. I don't think I can take losing 30% of my hair again!

Wednesday, April 10, 2013

Biologic #2 - The Humira Trials

Well a lot has happened since I last wrote. I caved in and started metho again, got laid off from my old job, found a new one, and now we're in another months-long flare! I'm trying to keep positive, but some days it is hard. This is a great outlet, at least.

Anyway, it appears the Enbrel is no longer working, so my rhuemy is switching me to Humira. We'll try every other week to start, with the possibility of moving to every week if needed. Fortunately, this is another category B drug, so if pregnancy yearnings enter the brain again, I would be able to stay on it (confirmed with my OB). I'd have to get off the metho, though, which I'm seriously considering since I've lost about 1/3 of my hair over the last 6 months!

I guess we'll see how the Humira works first. In the meantime, I'm rocking a cute bob and highlights to help cover things up.

Thursday, March 8, 2012

We have an answer: Herniated disc

I had another MRI on Tuesday - this time of my lumbar spine - and got the results surprisingly quickly. It showed that I have a "broad based herniation at L4/L5" and an "annular tear" to the disc. Bottom line: the disc is bulging out and pressing on the sac that surrounds my spinal cord. This pressure is in turn firing off a nerve, which is where the pain in my hip & leg are coming from. Good times!

Actually, I have to admit, this week has been a bit better. My rheumatologist gave me some pain medication last week, which helped me get some rest and overall seemed to calm things down. So now it's manageable, albeit rather uncomfortable. I'll be starting physical therapy on Monday to see if we can further reduce the pain & swelling. If not, then I'll be headed to a pain management doctor to see about having a cortisone epidural. I'm kind of wigged out at the thought of a shot in my spine, so I'm really hoping to avoid that one!

If any of you have dealt with a herniated disc before, I'd love to hear from you. Is the pain something that comes and goes? Did you try PT & did it work? Any other thoughts/tips?

Tuesday, February 28, 2012

New struggles, new questions

I know it's been a while. But since my husband and I moved to California, I've pretty much let go of the idea of having children. We are loving our new life here and I'm no longer feeling the pull to be a mother. I'm also back on methotrexate, so that precludes any immediate pregnancy.

Because of that, and the fact that I've been doing pretty good since last spring/summer, I haven't had much to say. But good ol' RA, she never lets you go that long without reminding you of her presence, does she?

This winter, I developed pain in my hips - mostly on the outer sides of my legs. It was uncomfortable when exercising and I couldn't sleep on my side, so I mentioned it to my rheumatologist. He said RA predisposes me to inflammation of the bursa (bursitis), so he shot both hips with cortisone (holy hell that hurts for a few days!). That seemed to clear things up. I was back to exercising 5-6 days a week and feeling good.

But then this insidious pain started in my upper hip/buttock. I thought for sure it was a return of the bursitis. Back the rheumatologist I went. He said it wasn't bursitis. He thought maybe a labral tear. (The labrum being the soft tissue that holds the hip in it's socket.) So, I had an MR arthrogram last week. That's where they inject a contrast agent into your hip joint, then do an MRI of the hip to check for damage. (Again - that seriously hurt for a couple of days afterward. Why does no one warn us of these things???)

Monday morning I got word that the hip was fine. So, why can't I exercise for more than 10-20 minutes without pain in my upper hip and buttock? Why, when I stroll the mall for an hour, does the pain start to wrap around down my leg and into my knee, making every step nearly unbearable? Why, when I finally lay down at night for some peace, do I toss and turn trying to find a spot to ease the pain?

On the search for an answer, the rheumatologist is consulting with the radiologist to see if they checked the iliopsoas bursa/tendon. The iliopsoas bursa is in the back of the hip. It's a rare to have bursitis there, but it's possible. From what I've read, my pain sounds most similar to this. So, if they do find that it's inflammed on the MRI - we might try a cortisone shot there and physical therapy. It could take a few months to see improvement, but at least there's hope.

The alternative, my rheumatologist fears, is that it might be referred pain from my spine. Which could mean physical therapy or surgery or simply having to live with the pain. No one can say for sure.

My real fear is that they will find nothing. That some may think this pain is all in my head. I've always been so unsure of myself when it comes to medical things. Even when my fingers swelled as my RA first developed, I wondered if I was making a mountain out of a mole hill. (Obviously, it turned out to be a true mountain - which some days feels as challenging as Mt. Everest.)

So I sit and I wait. Wait for answers to questions that I fear may be unanswerable.

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!