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Is This How It Always Is?

  • By Angie

    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.

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  • By gingy

    Hi Angie, it sounds like exactly what my 32yo daughter is going through at the moment getting shoved from pillar to post not knowing what the final outcome is going to be and if it will even ever eventuate. It sounds like a very common complaint from lots of people.

    How can doctors get it so wrong and why can’t they pinpoint the problem in the first place? I wish there was more research and better outcomes for the disease so that patients can be treated properly. You say that your doctor is thinking of putting you on Methotrexate, I do think that is a good idea as I have been told that it works well once the dose is corrected. The only down fall is that it can cause nausea, that was the only reason my daughter wouldn’t stay on it because of the nausea. It has been 4yrs since she stopped it and has recently tried to get a different rheumatologist to put her on the injection instead but because her blood tests are coming back normal they wont treat her, but now she is going back on the tablets that she still has at home to prove to them that it works. Its a never ending battle but I hope perseverance pays off in the end for both you and my daughter.

    good luck!
    Gingy x

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  • By Angie

    Thank you for the kind words and letting me know I’m not alone, Gingy! I’m actually the exact same age as your daughter, what a coincidence! I hadn’t even realized methotrexate came in pill form, as I was only offered injections. Has your daughter gotten another opinion? I saw so many doctor’s before finally getting diagnosed, and my first doctor said the same thing. I had a history of positive RF and ANA, but it was negative at the time and he told me there was nothing wrong with me. I started bawling in his office, devastated that another doctor was blowing me off while he looked unimpressed and unmoved. Asking for a second opinion was the best thing that ever happened to me.

    A good rheumatologist is the best. He notices things I did not, picks up on issues I hadn’t even thought of, and actually listens/returns phone calls! I highly recommend him to anyone locally I meet with rheumatoid issues. I hope they listen to your daughter as we’ve all probably had negative blood work at some point or another, I know I have.

    Tell your daughter I feel her pain, particularly the age struggle (I wonder if I’m suffering this much now, how bad will it be when I’m older or retirement age if the disease progresses as I’ve already had a hip surgery).

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