Down to zero

After 4 years of MG symptoms and 3 and a half years of the diagnosis, I’ve been given the go-ahead by my consultant to reduce my medication to zero. Nothing, nada, zilch.

Earlier this week, I gave my consultant an update on how I’d got on with going from 100mg to 25mg aziathioprine. The short version is that I don’t feel any different now – there was a time when I wasn’t sure between 75mg and 50mg as my symptoms were worse than they’ve been in a while. But I waited it out realising that a month between stepping down doses wasn’t long enough so I’ve been waiting 2-3 months between reducing my dose.

Now comes the real test – my next step is down to zero then down to 1mg of steroids every second day then nothing. So totally drug free. 2017 will be the year I tested going drug free.

This is what I’ve been wanting for years, what I’ve been working towards, but this week I’ve felt a little numb to it. I’ve not been sure how to feel about it so I’ve put off thinking about it knowing that I’m away this weekend. In the middle of nowhere, with lots of time to think. But now I’m here and I’m still struggling to feel it. 

Thinking about it, it’s probably because now comes the scariest part. The ultimate test of whether the thymectomy and healthy lifestyle (early nights, good diet and lots of exercise but not too much) will allow me to stay in remission. Proper remission. 

I’ve been told it’s fine to take 1mg if I’m feeling weak, which is a good back up. But when I finish my latest prescription in a few days time, it will be time to step into the unknown. Wish me luck!  

6 thoughts on “Down to zero”

  1. Oh my gosh that’s great nerve wracking news!! I hope all goes awesome and thanks for the update I haven’t heard anything in a long time šŸ˜€ My remission fingers are crossed for you!

  2. OMG I feel so excited for you and nervous and happy! Please keep us updated, you are giving us all so much hope! I mean I could not imagine even being on even 1/2 the meds you are on so I am clearly waiting on my thymectomy to give me that extra hope. I feel like I am living this with you! Sending all my strength, love and support! You got this. It may be hard to feel that change right away because you are expecting the other foot to drop but I know you will eventually notice after a while not needing to do things a certain way once the anxiety wears off and you stop thinking about it. I have even become that way when I am able to relax and am not stressed when I am in remission. You got this!

    1. Thank you – that’s really kind. It can be done, but I’m aware how lucky I am to have had the experience I’ve had so far. Really hope it goes the same way for you after the thymectomy – I had it almost 3 years ago so it has taken quite a good bit of time and patience to get to this point.

  3. I wish you all the best. It’s so good to hear you say that a healthy life style is helpful. That’s what I want for my girlfriend too as we sre planning to live together as life with her family is rather stressful. Thank you so much for your story, I am sure it will all go well for you šŸ™‚

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