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Rheumatologist Updates

Since I forgot to post an update after my last appointment, I wanted to make sure I got the new update up as soon as possible. I switched rheumatologists in February, and I couldn’t be happier with my new doctor. My last rheumatologist had zero social skills and didn’t really listen to anything I was saying. This rheumatologist is very chill and actually listens to what I have to say. (.. and those readers who follow me on twitter will know that I was greatly pleased to see bright coral nail polish on her toes AND finger nails. It’s the small things, isn’t it?)

1. azathioprine

Last februrary we switched from methotrexate (mtx) to azathioprine (Imuran) to see if I could get the same results without the nasty mtx side effects. So far the results have been good, my liver enzymes are normal, and the side effects have been bearable to so we’re sticking with the azathioprine.

2. gabapentin

In February, we also added gabapentin. I was a little nervous about this after all the weight I gained on the pregabalin. The pregabalin didn’t help my pain at all so I’d been weaned off of that by the last rheumatologist. So far, the gabapentin didn’t really help my pain either. It did help my restless legs and it knocks me out most nights so I have less trouble with insomnia. Unfortunately, it also makes me wake up with a hangover and feel drunk and groggy all day. So my doctor stopped my morning and afternoon doses. We’re going to try dropping the night time dose from 600 to 400 (or if that isn’t enough to help the sleep and restless legs hopefully 500 will work). Guess we’ll see how that goes.

3. tramadol

I’ve been avoiding the pain meds as much as possible all these years. I fear pain med addiction. I fear labels like ‘drug addict’ that many chronic illnesses sufferers face and make it harder for us to get the care we need. Unfortunately, the costochondritis has gotten out of hand. It causes enormous amounts of pain. On bad days, I’m stuck whimpering or even crying in bed. The rheumatologist felt along the ribs and freaked out. She wanted me to get on low dose prednisone, but I really didn’t want to get back on the pred. So she gave me a pain killer called tramadol used for fibromyalgia sufferers that I can use when I really need it. It isn’t going to fix the problem, but it might make it more bearable. I’ll let you know how it goes.

4. my poor wrists

I’ve been using this time at home to catch up on years and years of reading list backlog. Well, in between Buffy marathons on Netflix Instant that is. Unfortunately, my wrists aren’t enjoying this as much as my mind is. Last February, my doctor told me to get an ereader. I didn’t. I go through too many books too fast to afford buying the books and libraries still have limited lists of ebooks. This time she put her foot down. She wants me to get an ereader AND to find splints that go around my wrist (but not over the whole hand and wrist). Joyous. Time to do some research on ereaders! Anyone have any advice?

5. sun exposure

As expected, I got in some serious trouble about the tan lines from the wedding memorial day weekend. Oops. I got off easy though because I was wearing my big hat and since I only had a greasy sunscreen it was obvious that I didn’t forget that detail. Still, the importance of avoiding sun exposure was made very, very clear.


One Response

  1. Hi there! Just wanted to let you know about an Online Lupus Support Group recently started by Molly’s Fund Fighting Lupus, a non profit based in Portland, Oregon.

    Here are the details:

    Molly’s Fund Fighting Lupus, invites Lupus patients all over the world to participate in an Online Support Group. The group meets this Sunday, July 17th, at 4:00 PM.

    No matter where you live, Molly’s Fund Fighting Lupus wants to offer you a place to share your experience of living with lupus. Our Online Support Group meets weekly. Our chats focus on a different topic each week, including subjects like:
    • Lupus and Relationships
    • Pain Management & Avoiding Fatigue
    • Finding the Right Doctor
    • Building a Support Network
    • Explaining Lupus to Friends and Family

    The Online Support Group is peer-led, and open to everyone who has been affected by lupus.
    Here’s how you can join our Online Support Group now!
    1. Register on the Molly’s Fund website (http://www.mollysfund.org), using the link at the top of your screen. You’ll be able to create profile with a picture and any information you’d like to share. You can choose your privacy settings, and no information will be shown without your permission.
    2. Visit the Voices of Lupus section of the Molly’s Fund website, read the descriptions of upcoming meetings, and RSVP! You will receive reminder emails once you have RSVP’d for the meetings.
    3. At the start time of the next meeting, the Online Support Group will be open! Login with the username and password you created when you registered, and join the chat!

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