Just seen lupus specialist prescribed new tablets

Hey all

I have not improved since my last review in Nov, in fact as well as my voice being strained and chest pains, I now have protein in my urine. The specialist has prescribed me Mycophenolate mofetil tablets to take as well as Hydrox and steroid. I also had a high dose steroid injections.

May I ask if anyone else has or are having this mix of treatment and if it helped?

I am starting to lose hope that things will improve, it's never ending

Big hugs to you all 💕💕

4 Replies

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  • I'm saddened you are suffering so. I have not tried your mixture. But if it helps the one thing we can each do in our sick beds is to pray for others. I learned this from a woman who lived in an iron lung. She serves others by praying for them. Perhaps lupus slows us down for some profound purpose such as prayer.

  • Have the same medication as but my steriod intake is only now 5mg daily, I think this mix is fine with me but this may soon change as I am due to go onto a new course of chemotherapy which involves the use of a drug designed to bolster my immune system, thereby being counter to what mycophenolate does. My Professor of Oncology tells me he can find no data relating to this new cancer drug interacting with my Lupus.

  • Hi.

    I'm not a regular participant here anymore, but YES !

    I was on a similar mix of drugs not so long ago for an SLE flare (with protien in the urine) and those drugs will make you feel better eventually. It just may take a bit of time for things to settle - but I think those drugs will do the trick.

    Steroids and mycophenolate are the best possible drugs for Lupus and protien leak.

    Make sure you rest and look after yourself.

    X

  • Thank you so much 😊

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