SLE Nephritis

Hi all,

I was diagnosed with SLE Nephritis IV in 2008 (a year after my Daughter was born). I was also diagnosed with anti phospholipid syndrome after having two DVT's. Luckily I was in remission for six years and was not taking any medication. Unfortunately my Lupus flared last November and I had to have another kidney biopsy and was prescribed Prednisalone and MMF etc which. Does anyone else find Prednisolone side effects ('moon face') horrendous?

I find Lupus a very isolating and lonely disease as although people try to understand, only other Lupus sufferers truly understand.

I'd be interested to hear from anybody with SLE and how it effects them and how they deal with it etc.

Thanks

Katie

5 Replies

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  • Hi Roxy21,

    Welcome to the site.

    I'm sure you'll receive plenty of comments from other members of the community very soon sharing their experiences.

    If you are ever interested in meeting up with other people who have lupus too, we have Regional Support Groups around the UK. You can find your nearest one at lupusuk.org.uk/regional-gro...

  • I also have class four lupus nephritis and am on prednisone. My rheumy says it's likely I'll be on steroids on some form or another for the rest of my life, so I also experience "moonface", even when the rest of me is edema free. It can be a little disheartening, as no one can tell just how slim my ankles are, I just look fat-faced.

    The hardest part, on a practical level, for me right now is the renal diet. It is so restrictive and I have so long since loved food as a way of celebrating life that I'm having a hard time adjusting. I'm trying to get around this by trying all kinds of new spices for foods. There has to be a reason why spices were once considered currency for world trade, right?

    You're definitely not alone and this board can be super helpful in connecting to other people who understand. I'm still learning about nephrotic lupus and this board has some really great resources for that, too, if you're looking to learn how the disease can change depending on which organ it's attacking.

  • Renal diet? Can you please share some ideas or examples of your meals? I am bored of mine. The rheumy said to stay away from carbs and sugar (few fruits), and the nephrologist restricted meat and all seasoning sauces/gravy etc.

    I love spices too... fresh or ground peppermint, mint, basil, rosemary, cilantro/coriander, celery, laurel/bay leaf, all delicious and safe.... I am really careful with cummin because it causes muscular spasms. Basically I make different combinations of them with chicken and vegetables.

    Sam

  • Hi dear. Well, you know you are not alone :) I was diagnosed with SLE and nephritis class I (going to II) just this january so I still am learning how to cope with the bad days: pain, anemia, moon face and belly fat, lately gastritis and colitis (maybe due to MMF ???) while working 10 hrs daily. I got tired just writing about it.

    Must confess that I am controlling LOL, and it drives me crazy that no week is the same than the last one in terms of symptoms. Arggghh.

    Isolating? Hmmm haven't thought of that, for me is a good chance to see who is a true friend... and I have a meditation group that makes wonders for my mind, soul, health and attitude. I really recommend a supporting group!

    Hugs!

    Samantha

  • I have had SLE Nephritis since 1977, and my Pred doses have been the same for the last 16yrs - 6mg. I have had no side effects on this dose. Dr's are not happy keeping you on high doses of Pred unless really necessary. If you have any questions about your drugs dont hesitate to speak to your renal team, I have always found my Drs very understanding even when the questions are really daft! I also recommend a support group or you may have access to a renal counsellor. They have been fantastic. I really hope you start to feel well very soon xxxxx

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