It wasn't a positive appointment - not because she wasn't awesome, as usual (she was) - but because it brought home how much different things are than they were even a year ago. I'm "losing ground", she said, as she went gently tapping and squeezing from joint to joint, pointing out heat and inflammation I hadn't even noticed. My RA has moved into joints it has never even mildly effected: both feet, right elbow, right shoulder.
She also caught me out in a recent rebellion:
Dr. P, innocently: Hmmm. I wonder if you're not getting enough methotrexate?
Me: Uh, well, I did actually cut my dose in half without telling you...
Dr. P: I KNOW you did.
Oops. In my defense, my hair was coming out in clumps. We have agreed (both of us a bit grudgingly) to raise my dose back up to three quarters of what it was. But I'm also going to start Plaquenil, and a ten-day course of Prednisone, too. If that doesn't work, it will be time to move on from Enbrel.
I really hate the idea of being so drugged up. Celebrex, methotrexate, plaquenil, prednisone, Enbrel, plus my heart meds. I especially hate methotrexate, even though the hair loss is my only real side effect. I just hate it on principal, and hate that I've been taking it for seventeen years.
I'm also nervous about trying a new biologic, if that is where this road takes us. My rheumatologist believes patients see diminishing returns after switching off of their first one. I've been taking Enbrel for ten years now, and at the beginning, it was truly amazing. I will always be thankful for those years of almost complete remission in my early twenties. Now I'm scared I won't feel like that again.
I try to remind myself that I can handle whatever this disease throws at me, because I am already handling it. And maybe, as family have suggested, and as Cathy suggested after my previous post, stress has something to do with it. I've been absolutely wiped out by this semester, as much as I enjoyed what I was taking. I worked a research job, wrote eight papers, and just finished a really intensely difficult exam in which I wrote 3,000 words in 2.5 hours, plus I'm co-chairing the Walk to Fight Arthritis and doing maid of honour duties for my best friend. I love being busy, but a lot of this recent busy-ness has been mixed with anxiety, and I haven't been sleeping much.
I will start my new meds this weekend, and see how things go. I'll try to get more sleep and stress a bit less (school is finished for the year, which should help). And I'll see my rheumatologist again in eight weeks or so. And just keep going.
5 comments:
Just want you to know that I'm thinking of you, Helen. Law school all by itself is no joke - and with RA it's even crazier!! You deserve SERIOUS props for your determination and perseverance. You are seriously awesome and I just thought you should know. ~;o)
What Mariah said, Helen. I'm so sorry you're having a rotten re-flare (is that a word, counselor?), and I hope with fingers crossed that the new meds will get your RA back under control. Sending warm wishes, comfort, and peace to you. Relax a little. (((hugs)))
Adding and switching drugs is always scary. I don't envy your mind right now as you think over everything. :( I am thinking of you and sending many healing thoughts for you.
Several months back I started taking Biotin for my hair loss from Arava. It is a supplement recommended by my rheumy. It has helped. While I don't have thick hair by any means, the hair isn't coming out in handfuls.
I'm so sorry things haven't been going as you would have hoped, Helen. My fingers are crossed that things settle down for you in the coming weeks and that you feel better soon.
:) L
Thank you so much for your lovely comments, everyone. :) It really means a lot. I started my new meds this morning so we will see how things go. I'm starting to feel more positive about them - I'm trying to think of this as an opportunity to be proactive rather than a failure of my current treatment.
And Cathy, thank you for the Biotin tip! I'm going to give it a try.
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