Nephrologist

[Wrexlu]

Have any of you had to see a nephrologist regarding SLE? If so who have you seen and could you reccommend someone?

Thank you

Lucy xx

[Wrexlu]

Thank you. Where is your nephrologist based?

[overnighthearingloss]

When I was required to see a nephrologist in addition to my lupus stuff, the lupus team directed me to one who was knowledgeable.

Is it possible that your team may know someone in your area?

[NewEngland3]

Phillippo,

WHat are you on for LN Type 5? I was recently dg with it and am going on Cellcept next week? What does the road look like?

[ecc_active]

Hi Wrexlu, my nephrologist is wonderful, have been seeing him for many many years and he is the only specialist I see for my SLE, but that is because my issues are primarily lupus nephritis luckily and not really rheumatological or anything else. You are definitely on the right lines wanting to see someone who has experience with Lupus nephritis as some nephrologists don't have a huge amount of experience with it or confidence in dealing with this complex disease. Where abouts are you based?

Good luck with everything, finding a good consultant is so important in so many ways so I wish you all the best in finding one you can gel with and that you can put your trust in fully.

[Wrexlu in reply to ecc_active]

I live in Leicestershire but local health authority discounted Lupus for 11 years. Am now under a rheumatologist in Bath. I am having so many kidney infections and feel quite unwell. I don't know where to turn. Thank you for your feedback.

[ecc_active in reply to Wrexlu]

So sorry to hear you are having these issues. I’m based in the north west unfortunately. Hopefully someone based near you will be able to give you the name of a good nephrologist who will be able to help you with these issues. Good luck and hope you start to feel better soon!

[Wrexlu in reply to ecc_active]

Thank you!

[NewEngland3]

Phillipo -thanks. I am excreting 2-3g protein/daily. I wrote a more detailed post about my symptoms you can look at. How long did it take you to get a response on Cellcept? Did type 5 end up affecting your blood creatinine? Mine is still normal but I want to keep it that way! I am extremely sun sensitive as well--and live in the US that is plenty sunny

PS After being dg with nephritis I have gone vegan/gluten and soy free-so 2 months ago and while I do not believe it will be a magic cure it does seem to have helped my musculoskeletal symptoms somewhat.