Lefludomide and muscle pain

Having reacted badly to methotrexate, hydroxycholquinine and sulfasalizine I have been prescribed lefludomide. Because of my inability to tolerate anything I'm on a slow build up. 10mg every other day for two weeks then once a day from then on.

I've been taking it for nearly two weeks. My RA symptoms have substantially worsened and the effect of the steroids is being negated. This morning I developed intense pain in my arms. It's like I've been to the gym and presses weights for three hours.

How long do these side effects typically last? At the moment touch wood I have no nausea and diahorrea which plagued me even on methotrexate injections so I'm really hoping I can tolerate the ledlusomide.

6 Replies

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  • Hi Frankiefarr,

    when I see a post about nasty side effects I always look back on my old posts as I documented each new drug as I went along the ra road. Leflunomide..yes I remember it well. The main side effect for me was really awful shoulder and arm pain. If you look back at my post entitled Leflunomide from 3yrs ago you'll see I had awful trouble with it. I still remember being incapacitated so badly I could hardly move my arms. I know these drugs effect us all differently though and you may find it works for you, fingers crossed.

    I'm on Humira now after going far too long trying too many Dmards. It makes me mad when I look back on all the pain and wasted time. Have you asked about biologics?

  • I had no luck with any of those on enbrel biologic

    doing better . But still have flare ups, last one lasted three weeks, also have fibermyalgia. I take them four months and just could take it any more..told doctor but I had nausea. Good luck

  • I had this and was in agony, could not move arms above my waist, really terrible pain in wrists, hands etc. It felt like the RA was worse but the RA consultant said try to stay with it for another few days and I did then one morning I woke up pain gone , much more energy and feeling great. Apart from a couple of bugs and be careful with bugs and colds I went into remission and have been ever since. I get on well with it and no hair loss or pain and no swelling at all.

  • Hi Medway Lady that's great to know and gives me hope x

  • I recommend a bag of frozen peas on the bits that hurt most. I cried a lot with the pain but it did go and suddenly to. It takes a long way for the LEF to get things under control though, in my case 12-14 weeks so be patient. x

  • I think it's time your rheumatologist changed your meds. I too have problems with many meds, I'm currently on my 4th Biologic but they do make me feel much better.

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