I am new here. I know every case is a little different, but I’m so sick all of the time and I have yet to find medicine that REALLY works, so I’m wondering if this is what I need to come to terms with living with, instead of unrealistically hoping for better.
I’ve been diagnosed for 4 years, but I’ve struggled for over 10. I have a possible lupus diagnosis as well, but I don’t know how and when that’s ever really “proven”. I’ve been on Lyrica, Plaquenil, and I’m now on sulfasalazine (what a mouth full!) None have really worked. I tend to react easily to medications, so Plaquenil is listed as an allergy because it made my hands and feet numb. I didn’t notice a difference with Lyrica and I don’t with sulfasalazine either (except it’s affecting my anemia). My doctor says the next step is methotrexate, but I’m honestly not sure I want to go that route. I have a close family friend who went on one similar (may be the same, not sure) during a clinical trial and developed kidney cancer. The cancer risk terrifies me. I’m not even sure how an anti-cancer medication can cause cancer??
Anyhow, I’m not sure if I’m ready to take that plunge, plus I plan on having children and I’m at the point where it’s the “sooner the better” because I feel like I’ve already put it on hold for too long waiting for my health to “straighten out”, when it never actually does. Now I’m 3 surgeries later and after being told my form is an “aggressive” form, I figure the longer I wait, the harder on my body it will be. My rheumatologist wants to take me off all meds while getting and being pregnant.
But I’m wondering, how much better is remission, really? Right now I hurt all over, all the time. I had a hip surgery go badly and I have nerve damage that will not allow me to walk normally on steps again. I have constant pain despite a year of consecutive physical therapy. Getting up hurts, laying hurts, cooking hurts, cleaning hurts. How are we to even function? I’m on prescription pain meds, but I’m fuzzier than I was (which was already fuzzy) and tired all of the time. It’s no way to live. I feel like once I find that “remission treatment” I’ll be able to function so much better.
But I’m wondering if that’s a realistic mindset based on everyone’s personal experience with this disease? Maybe I’m sitting around waiting for something that’s not realistic when I should be focusing on trying to make the most out of what I have.
Thanks for listening, I know it’s a lot.