Good morning all. This is my first post so please excuse me if I get it wrong. I was diagnosed with RA approximately 2 years ago. I was put on methotrexate a year ago but taken off of it because of my liver. Selfosalazine was next but taken off of that as well. Know I'm on leflunomide. I'm having loads of side effects so I've been told to take a week off of it. It was really bad last week when depression set in and I felt suicidal for a couple of days. Blood tests are all in range apparently. Really tired, kidney pain, bad stomach, bruise really easily and aching joints. Has anyone experienced this and if you have what did you do?

6 Replies

  • Hi Nicky seems like your not doing well with the demards ...keep pushing and you should hopefully get to the biological s after exaushting all the demards ...I would push hard and never underplay your symptoms with the rumy. ..in my experience I would say make sure your always on something to control it

    I came off mine for 6 weeks and have now gone through a year of hell the worst in my life and that's after having it for 20 years

  • Although many people can tolerate DMARDs and do well on them there are others that cannot tolerate them. The most I appear to be able to cope with at the moment is 200mg hydroxychloroquine and have spent much of the last 13 years on biologics. Hospital protocols dictate the order in which you are offered drugs. For me it is the stronger anti-inflammatories that can make me depressed and DMARDs make me feel ill or affect my bloods.

    Do you have a rheumy nurse you can contact as your meds probably need to be reviewed. Farm

  • I'm so sorry things are so bad for you Nicky C but welcome & I hope we'll be able to help. Failing that or as an option would you like to speak with someone? If so I'm sure the helpline will be able to help (Freephone Helpline: 0800 298 7650).

    Unfortunately in some cases it can be a bit hit & miss finding the right meds, more often in the early months following diagnosis but I'm sure all your team are doing their best to help. Do you find they're supportive or is this part of the problem do you think?

    I'm afraid contrary to the previous reply unless extenuating circumstances are cited biologics may be just out of reach for you if you blood results are within normal ranges but your Rheumy I'm sure will suggest this when all avenues have been explored, he/she won't let you suffer. You may know but guidelines for biologics are hefty, that's not to say you won't qualify further down the line but they too have their own side effects & generally work better with another DMARD, usually MTX. Has nobody in your team explained what the next step would be if you continue to have problems with LEF? Some people find having a plan in place helps to cope with the disappointment on failing with treatment.

    Also, have you made an appointment with your GP to discuss how you're feeling just now? If not I strongly suggest you do, there are options for your GP to choose, medication or help from another resource, just to get you over how you're feeling at the mo. Quite a few of us have meds to help this way so there is no shame in admitting how you feel. You're not alone, remember that. We're here to help wherever we can.

    Take care & keep in touch. :)

  • Thanks to all of you for your replies. I do have a rhumy nurse and it was she that suggested taking a week off the lef. My GP keeps changing so even though I have told her how I feel nothing happens. I don't think she knows about the meds as she tells me to contact my nurse. Nothing has been discussed about moving forward but I have to see my main man in December.

    Really feel like throwing in the towel and walking away. Just got to wait until December.

    Glad Im not alone.

  • I would definitely make an appointment to see your GP about how you're feeling, she doesn't need to know anything about your RD meds for that. She (or any other GP in your Practice) has a duty of care for your general wellbeing. If you feel it would help consider asking someone close to you to accompany you for support, if you don't feel you're being listened to.

  • Ask your GP for a script to see a psychologist. It's good to have someone to talk to, and much as we all want to support each other, we're not professionals (at least, I'm not!). :)

    You are most definitely NOT alone.

    And I also had periods where I felt as down and desperate as you. A psychologist (and time off work) helped me immensely.

    Good luck to you & gentle hugs!

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