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I'm off Methotrexate

Posted , 9 users are following.

Susanne_M_UK
Susanne_M_UK

I finally saw my rheumy yesterday, following PET scan and temporal biopsy.

The side effects of MTX have been getting steadily worse over several weeks to the point where I was either sleeping or resting. It felt as if my body was giving up. I have also nearly lost my voice, it sounds as if I have a bad throat infection, although I don't, my voice has just gone.

The end result of my consultation was that she told me to come off the MTX as the side effects were just too severe. I'll continue with the folic acid until I see her again in 4 weeks time. I'm so relieved. I really wanted it to work, but it was leaving me unable to function. I will continue my taper of the pred unaided and hope for the best. Currently on 22.5mg for another 2 weeks, then down to 20mg. 20mg and below is where I've had problems in the past, so we'll see. I'm 6 months down the line since I started MTX and that further forward with the GCA, so maybe, if I'm lucky, I'll be able to reduce better.

As for the nodule on my lung, she will discuss with colleagues. She said it could just have been there all the time, but I pointed out that it wasn't there when I had an x-ray before starting the MTX. Funny how I have to point out the obvious!

The biopsy had shown no giant cells, - again not expected, but the surgeon performing the biopsy told me the artery section looked unhealthy and withered. Again, rheumy will investigate further.

So, I'm feeling optimistic, although exhausted, that I will be off the MTX now.

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  • Susanne_M_UK
    Susanne_M_UK

    Posted

    Saw my rheumy today.

    I'm currently on 21mg pred (I chickened out of going from 22.5 to 20mg in one go). I told her I would like to taper very slowly in 1mg drops over 3 weeks depending on how I feel. She was happy with that.

    If I manage to avoid any flares, I'll see her again in 4 months time, so things are looking positive.

    I feel so much better without the MTX, I've got my life back, although I still tire easily and rest during the afternoon, but not to the point of collapse. Next step is to start some gentle exercise, walking, which I can increase gradually and hopefully get fitter and lose some of all that weight I've gained.

    We've even booked a few days away during August at a lovely peaceful manor house hotel about an hour's drive away. It's the first time I've been able to even think about going away since the GCA started. Looking forward to being pampered!

    • MrsO-UK_Surrey
      MrsO-UK_Surrey Susanne_M_UK

      Posted

      Great to hear better news from you, Susanne - you're certainly sounding more positive, and wonderful news that the rheumy sounds as though she is prepared to work WITH you rather than push you into reducing faster, as some do.

      ?The break away sounds just what the doctor ordered!  You have certainly earned and deserve a bit of pampering.  We had a similar sounding break shortly after I recovered from my first horrid undiagnosed year, really my treat to hubby for taking such good care of both me and the house during my months in bed.  A really lovely manor house hotel in Sussex.  I hope you enjoy the pampering as much as we did.   

    • tina-uk_cwall
      tina-uk_cwall Susanne_M_UK

      Posted

      Hello Susanne, I agree with Mrs O a weekend away sounds like just the tonic you need given what you have been through these last 6 months or so. I know that MTX works for some patients but I'm glad you're off it and in its place you have chosen a slow method of reduction. sometimes I do think that's all that is required instead of dr's thinking about rushing patients off of preds with the help of MTX. All the best and have a fabulous break away. Regards, tina

  • Susanne_M_UK
    Susanne_M_UK

    Posted

    Thank you Mrs O and Tina. Feeling very positive and looking forward to my break in The New Forest.
    • MrsO-UK_Surrey
      MrsO-UK_Surrey Susanne_M_UK

      Posted

      "looking forward to my break in The New Forest."

      ?It wouldn't happen to be Chewton Glen by any chance would it, Suzanne?   

      ?  

    • Susanne_M_UK
      Susanne_M_UK MrsO-UK_Surrey

      Posted

      Thank you. It does look great, doesn't it. We haven't had a holiday for two years, - that's my justification! ??

    • MrsO-UK_Surrey
      MrsO-UK_Surrey Susanne_M_UK

      Posted

      As if you need any further justification for a break after what you've been through for so many months!wink

      Just wondering if you'll be away for the August meeting?

    • Susanne_M_UK
      Susanne_M_UK MrsO-UK_Surrey

      Posted

      Well, of course I won't be now. Cancelled until further notice!

      I'd love to come to August meeting, but suspect I won't be well enough by then and I'll be worried about catching any bugs.

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