New treatment leflunomide

Hi, I haven't been around for a while things are all changing for me and I feel really unsettled. It all started last November when I saw my Rhuematoid nurse and asked if I could stay on steroids for ever as I felt alive. Sadly as I knew was the case the answer was no. But after a discussion we decided that actually the methotrexate and tocilzumab injections weren't working, as I wasn't able to get up, I didn't want to take part in life, I was exhausted, in pain and swollen. So I had to wait to see the consultant to decide what we where going to do next. My nurse arranged x-rays and scans on my hands and feet, I had my knees and hips done earlier in the year.

Last Thursday I finally got to see my consultant and have decided I have tried many of the biologics that we would go a different way. So hence I have started on leflunomide,

I feel sick but not feeling any benefits yet! I know I am impatient , I am waiting for my methotrexate injections this is new as I have been on the tablets for 20+ years.

Then on top of that I have had my DLA to PIP letter and awaiting the form to fill in, so I am feeling like I want to scream. I try my best everyday, but I hate people knowing what I can't manage to do, no I hate showing what I can't do (yes true denial) my daughter and husband have to do so much for me. I feel completely useless. And then there is the fallout if I don't get the benefits, as I lose my car and the small amount of money I call my own! Let's me have the right to buy something new, don't get me wrong my husband does not mind me getting things but I feel bad that I don't work and earn my own money.

My life is upside down now, I don't know what to do for me how to get through all this stress and upset.

7 Replies

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  • I take it and at least 6 weeks and not fully until 12-14 weeks. But it did not make me feel sick at all. I'm in remission and this stuff has worked really well for me. I'd suggest take at night with a glass of water not a few sips as I do.

  • Thank you I will try that at the moment I'm taking it in the morning with my other meds. I take my methotrexate tabs at night on a Thursday.

    Thank you for replying, hope you are having a good day

    Love Gill

  • I was told to take it at night too. I think it's helpful I'm about 6 months in but I'm sure it doesn't help to be under pressure. Sometimes I have a day when I don't do anything much and it helps

  • Boy oh Boy do I understand the word IMPATIENT!! My rheumy is always saying "One day at a time Suzanne" but I've been waiting soooo long for remission. I have reached remission twice, but I always seem to loose that "sweet spot" after a few months or so.

    I think I also understand your need to earn your portion of the money. My hubby and I always have pooled our money. It always has been "our money". The problem is me, not him. Deep down inside, I think if I was able to work, then I wont be disabled. I don't want to be disabled, so I know this sounds irrational, but I think working would stop me from being disabled. Crazy sounding eh?

    Sorry for the rant. I know what I wrote sounds confusing, but it is how I feel. I just may be assuming you feel this way too.

    I hope the Lef works fast for you

    Sue xxoo

  • Hi Suzanne yes that is just how I feel, I had 10 good years with minimal flare ups, but now back to square one! I hate "being disabled" but can't change it as you know, and yes we sound crazy! But at least we are not alone and crazy xx will see my dr on Friday at least he listens xx

    Take care love Gill

  • Lots of hugs to you. I have only been diagnosed a year and was already retired but realise that controlling and coping with this disease is a marathon not a sprint. I have a much younger relative with aggressive RA, a job and a toddler and really worry how she copes - and will in the future. The emotional toll of chronic diseases is sometimes forgotten though sites like this and the NRAS helpline can be invaluable. I do hope that things settle down soon for you. X

  • Hi thank you sometimes we need to remember that we are in this for the long haul, I agree with your comment this is a marathon not a sprint, so will keep that on board.

    Hope you have a good day

    Love

    Gill

    X

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