So yesterday was the conclusion of my “Cleveland Adventures”. After driving out there in the pouring rain for most of the trip, I had a rather uneventful appointment with my CC Dr. It wasn’t completely pointless as I’d feared, because she did explain MCTD some more so I have a better understanding of what it is and know a little better what to expect. Although, the very nature of MCTD is the fact that it has no specific features or symptoms of its own, but instead includes a combination of symptoms and manifestations of a variety of other connective tissue diseases: RA, Lupus, Scleroderma, and Polymyositis (some people also include Sjogrens). For me it’s mostly RA and Lupus.
We also discussed treatment options. However, because I had already discussed with her the fact that I can’t keep driving out there—I have to take an entire day off work, not to mention gas is ridiculously priced right now—she didn’t prescribe anything. She has a rule about seeing patients for follow-up when she prescribes medications so she is sending my dr. here in Erie her recommendations.
Basically, she’s convinced that the Plaquenil is my best option. Apparently, she’s not convinced that any of the problems I listed were actually connected to my Plaquenil use—she said I wasn’t on it long enough for me to be having any type of vision or other problems. It apparently doesn’t matter that a few days after I stopped taking it things got better and eventually seemed to go back to normal. I think she believes I was overreacting and being a touch paranoid…but whatever, I’m pretty sure I’m the best judge of what symptoms/problems I was actually experiencing. Anyway, she believes that if I try the brand name version of the medication, I should be able to tolerate it better and she believes it’s my best option to decrease flare-ups and put it into “remission”.
Right now, all of my clinical features are lupus related, so she doesn’t feel that going back on the Enbrel would be beneficial—as it’s an RA medication and not for the treatment of lupus. If the Plaquenil doesn’t work, she suggests I try Methotrexate (MTX) or Imuran. I’ve taken MTX before, was on it for a few years in fact, and while it worked for a while, I’m not exactly crazy about going back on it. MTX is a form of chemo, and while the doses an RA/lupus patient use are much lower doses, it still makes me nervous. I’d very much like to have kids one day, and even with the folic acid, there were still some serious hair loss issues. Thankfully, I’ve always had thick hair, so it wasn’t really that noticeable, but pulling out handfuls of hair in the shower is disheartening regardless of how little it shows or how much you have left. I don’t know much of anything about Imuran, so I guess I have some research to do, but she did say that its very similar to MTX, so who knows…
I guess my next step is to call my dr here in Erie…who I just saw two weeks ago…and see if he wants to see me sooner than my next scheduled appointment in June. It doesn’t seem that continuing with just my current course of treatment was something she recommends, as she suggested adding any of three other medications to help control and try to eliminate the recurring flare-ups that I’ve been having the last year or so. So, that’s basically all I know so far…I’ll keep you posted!
As a side note: if you noticed on the sidebar, I’ve listed a bunch of RA and Lupus related blogs that I like to follow. Two of my favorites would have to be The Single Gal’s Guide to Rheumatoid Arthritis by Sara Nash and A Chronic Dose: A Blog about Chronic Illness, Healthcare and Writing by Laurie Edwards. I’m currently reading through Laurie’s book Life Disrupted: Getting Real about Chronic Illness in Your Twenties and Thirties. It’s a great book and I highly recommend it. She has a very honest and relatable way of communicating what it is we’re going through as young adults facing, and living, with chronic illness. She’s also very open about her own personal life and shares a lot about her own experiences with dr’s, treatments and life in general following her own diagnosis. It’s definitely a must read!
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