Just diagnosed

Hi all. After having various symptoms since October with intensity increasing since February I have been diagnosed with lupus. Im still getting my head around it. The steriods aren't working and all the blood tests havent come back so looking to do further tests this week to confirm I need to have chemo. Added complication ive got nerve damage/feet swelling in my feet causing chronic pain. Has anyone had nerve damage and had chemo?

8 Replies

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  • I have nerve damage but I have never heard of chemotherapy treatment for Lupus.

  • Im on a high dosage of steriods but the lupus symptoms are coming back so the docs are wanting to do chemo to blast the inflammation in my body. My aunt had it when she had other inflammation issues.

    How long did it take for the nerve pain to go? Or has it never gone? Ive got numbness, swelling, pins and needles and stabby sharp pains in my feet

  • I have all of that too. I have been dealing with my Lupus for 3 to 4 years now. It's a real pain but I get through it. I have had about a dozen strokes and mini strokes, my smile has changed, I don't eat as well, and I'm constantly in pain, I don't sleep well because I have night sweats and tachycardia, and I also have nocturnal seizures. In the time I have been diagnosed with it, I have had some serious setbacks. But I'll get through it. ☺

  • That's horrible I am really sorry to hear that. I hope things improve for you

  • They will. As bad as it sounds, I do have a few specialists that care so I will get pass it, but it will take some time.

  • Rituximab is a lupus treatment but it is also a treatment for lymphoma. Methotrexate is a DMARD which was first used (I believe) in leukaemia but in much higher doses. Other DMARDs such as azathioprine and MMF are used in transplant medicine as anti rejection drugs. They are sometimes considered to be chemotherapy type drugs. I'm not sure as to the classification but there are plenty of lupus meds that can be argued are based on chemo type meds because of their action on the immune system and T and B cells. I think it also depends on the dosage of the drug too.

    Please correct me if I'm wrong.

    I'm on subcutaneous MTX and have a special cytotoxic sharps bin at home. I'm injecting a cytotoxic drug and technically cytotoxic drugs are treated as chemotherapy. However, some medics would say that the dose of MTX means it's a DMARD but a pharmacist might say that the dose of MTX means it's being used as a DMARD but technically the drug compound itself is chemo. And then there are biologicals like Rituximab....a whole different kettle of fish way above my head. If anyone wants to make my waffle any clearer then please do!

    Hope that helps in some small way?

  • Hi ReneeD1987,

    Welcome to the LUPUS UK HealthUnlocked community. I hope you find it a helpful source of information and support.

    We have a factsheet about lupus and the feet which may be of interest to you. You can read and download it at lupusuk.org.uk/wp-content/u...

    If you need more information about lupus and LUPUS UK you can request or download one of our free packs at lupusuk.org.uk/request-info...

  • Thank you

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