So fed up 😢

I'm so fed up with being so tired , every night I'm in bed for 8 and feel could go earlier, I've been on plaquenil and methotrexate 20mg injections with no difference, rheumatologist has recommended rituxamab infusions but feel I'm not so sure these look so severe I'm a bit scared to say the least has anyone been on these and feel any better ? I've got 13 tablets a day due to having 2 heart attacks at 36 gets me down 😢😢 work as a support worker for adults with learning difficulties which makes me realise I'm not as unfortunate as some in a way helps me , right now I feel like stopping all lupus treatment as feel it's making me worse fingers so sore and feet also joints are all out of place did get injections into fingers that helped but been told that is just a temporary fix , my body is covered in bruises it's so embarrassing as it's on my arms and legs people always say what happened to you thinking my wee timid hubby obviously 🙄 sorry for rant but it's good to know people on here can get the understanding of this awful illness !!!!'

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  • Hi there , I understand your worries . I have sjogrens and i had first infusions last april and second in april . I was worried about starting it but I felt so ill i knew I needed to do something. I have experienced a great improvement and i was lucky that i was able to tolerate it . I did have severe gastritis after first course probably because of the steroids so they slowed the second course and it was fine. It took 6-8 weeks but I have more energy , less pain and my lymph nodes have reduced in size . Its not a cure but life is a bit more normal. It is a lot to think about as it is a powerful treatment but it has helped me . Best wishes, I hope all works out for you 😀

  • Thank you for the reassurance think I'm at the end of my tether as not getting a break just now hopefully when I speak with rheumatologist nurse she will advise me hopefully I'm able to take this also I'm glad you're feeling better fingers crossed 🤞 I can get a break I'm exhausted 😩 xx

  • It dose you good to have a rant when it gets on top of me I start typing and yes it dose make me feal a bit better . What pain relief are you on I take tramadol for the joint and muscle Pain and this really dose help me hope you feal better soon

  • I'm on shortec as tramadol didn't help thanks for your comment, just gets us all down sometimes 😢 hope you're well also take care

  • I cant comment on the infusions as Ive managed to dodge them. But it seems like your doing an active job both mentally and physically whilst taking this treatment. Have you thought of speaking to your occupational health to see if you can be on lighter duties or temporary reduced time, so you can pace yourself. I found when I start any new treatment I have go back to the old pacing techniques I had to use when I originally crashed. I imagine you work, manage a house, children if not grand children( I don't know you age) you help other people but probably don't accept help. One of the best things I learnt, was to review what was important in a day, like did I need to hoover? could the dust wait? turn off the TV whilst typing this. Look after yourself.

  • Hi Harrisgran1,

    I'm sorry to hear that you are struggling with your symptoms at the moment. If you want to read more personal experiences of having rituximab, I recommend that you have a look at previous posts here too - healthunlocked.com/search/r...

    Please don't stop your medication without first discussing it with your doctor and doing so under careful observation. It can be dangerous to suddenly stop certain medications and your treatment may also be helping you in some ways that you are not necessarily aware of. Stopping treatment could potentially cause a flare.

    We have a couple of articles on our blog which you may find helpful. The first is about managing fatigue and the next is about pain management;

    lupusuk.org.uk/managing-fat...

    lupusuk.org.uk/pain-managem...

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