The Old or Something New?

“You’re at the highest dose,” my rheumatologist told my husband and me yesterday afternoon and continued, “but, I’m on the fence as to how to move forward. I’m not sure if we should wait and see the full effects of the methotrexate or to try something else.” I’ve been on 20mg of methotrexate for 6 weeks and have not seen the change I had hoped for. In fact, the major change has been that I am sick 2.5 days of 7 from the medication and feel it wear off, as my hands and feet (etc.) feel tight, and puffy on Friday afternoons. So that gives me about three days a week where things are potentially okay (depending on the day/week). My doctor repeated, “The goal is no stiffness and pain.”

As an ending note, my doctor decided biologics with a lower dose of methotrexate may be the next step. I have to have a chest x-ray and he will be contacting my insurance to see what they will cover. I can’t help but feel terrified all over again. There is something oddly comfortable about consistency. I know what to expect and, although it is not great or even good, I find comfort in the known.

The idea of giving myself shots, further poisoning my body, and adding new risks make me feel uneasy, actually terrified for now. But, on the other hand perhaps my body will respond better and I will get days back? The statistics aren’t awesome and I feel myself wallowing in sorrow at the loss of my health and poisoning of my body, again. It comes and goes. Thankfully, pity party ice cream was readily available. Chocolate covered peanut butter filled pretzels in vanilla ice cream swirled with peanut butter. Yummmmmmy. I owe you that recipe.

I find myself daydreaming about medical remission. It happens, right? Is it good to be hopeful? One day at a time. That’s all we can do. I do know I am not in absolute agony anymore and am thankful to come this far.

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2 comments

  1. I really enjoyed reading your posts. I was also diagnosed in May. After a hysterectomy in late January my symptoms started and by late March walking, putting on make-up, etc. were all difficult tasks.
    My doc has me on methotrexate injections and as much as I hate shots (had two kids with no epidural because I don’t like needles), think that the stomach upset is less and have read that the dose is more consistent. I’m on 25 mg a week, but it just wasn’t getting it. I was also on Prednisone which helped my joints but has plenty of side effects. Every time we tried to wean it down, I went back to major flare. I was really worried adding a biologic, but I think it’s really helping.
    I just couldn’t do a second shot a week (call me a wimp!), so I opted for Remicade. It’s been around a long time so there is more long term research on it and I don’t have to give it to myself. Taking it means an infusion appointment every 6-8 weeks, but I try to think about it positively. The nurses are great, caring and experienced. So even though I have to have an IV started, they warm my arm/hand first, get it in quickly with little pain and then for about 3 hours keep checking on me, bring me a basket of crackers and juice, water, etc. I am now off prednisone and although I’m not pain free by any means, I am much better!
    I look forward to hearing how the food/natural approach goes for you. I would love to be off these meds, but for now, I know I need them to move! I was losing lots of hair too so my doc just increased my folic acid to 2 mg/day and will go up to 3 if it doesn’t get better this month. Have you tried increasing yours yet?
    Thanks for writing! This is a whole new world and it helps to know I’m not in it alone,
    Shannon

    • Hi Shannon,

      I read your comment awhile ago and it brought me great comfort and peace during a hard time! Thank you! It’s nice to have someone to relate with šŸ™‚

      I’m currently on 20mg methotrexate (pill) and 1mg of folic acid. My doctor has not mentioned increasing my folic acid. I am definitely going to ask about that! I just lost a big clump of hair today that nearly sent me into a crying tantrum!

      You cannot be a wimp with RA! Though, that doesn’t mean it is not scary! The fear of needles must be hard even with the infusions! But, I am glad you are able to do it and even have a reduction in pain. šŸ™‚

      I just actually got a call today that my doctor prescribed Humira and though I am terrified of it, I am also hopeful it will help. Now, I just have to wait for insurance authorizations.

      My food test is in and now I’m just anxiously waiting for my appointment to learn what the next step is for the homeopathic route! So many new things!

      I hope this message finds you well! šŸ™‚ Take care!


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