First nephrologist appointment on Thursday, can anyone tell me what to expect?

After many years of worsening lupus symptoms with not much showing in tests, everything seemed to happen at once in December. IE vasculitis of fingers & toes, raising complements & DNA antibodies, plus protien in urine. So rheumy made urgent referral to nephrologist.

I would be really grateful if anyone could give me an idea of what to expect next.

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  • No idea but all the best with it!! How odd that everything comes at once, that's the scary part of lupus. I hope all goes well x

  • Thanks purpletop. It may just be a case of watch & wait, as with so many other lupus related issues. Good to know that the rheumy is on the ball though.

  • it has been a while since I had my 1st appointment with Nephrologist., but I think you will have the usual tests, blood & urine. If you have noticed any swelling (odema) in your legs, or lower back tell the doc. The worst thing about damage to ones kidneys is that you can generally feel fine, but have severe renal failure. However it doesnt sound too bad as you have been given a urgent appointment and not been taken straight to the hospital. Start a no or very low salt diet.striaght away. Salt will no longer be your friend, but food does actually taste better with less salt. if i can remember anything else i will let you know.

  • Thanks LloydE, that's great info. X

  • No problem at all. By the way if you do need a Renal biopsy, it doesnt hurt, except for when the neddle with novocaine is injected into you. it does feel weird, not painful just weird. but you do feel a bit sore afterwards

  • Thanks again LloydE. I saw a very nice doctor today, who explained things thoroughly. He thinks there is a strong possibility I will need a biopsy, so it's good to know from you & others that it's not too traumatic.

    As you have mentioned, he said cut down on salt & protein as this can actually reduce the need for meds.

    Do you mind me asking what stage renal involvement you have & what sort of treatment you are, or were on? I like to be prepared, as you can see!

    Best wishes. X

  • I cant remember what stage it was, but i do remember the Doc saying to me that on a scale of 1 to 10, 10 being perfectly working kidneys, I was on a 2. That was on a Wednesday, if I hadn't have gone into hospital that Wednesday, on Thursday I would have been on a 1 and needed a kidney transplant, by Friday I would have been pushing up the daisies! Because I was so close to needing a transplant, I was on Cyclophosphamide 150mg, 600g Furosemide, 150mg Rantindine, 1000mg Calcuim tablets (cant remember exactly what they were called), 60mg Predisolone, a 24 hr drip of Heparin and two Insulin injections daily. That was for about 6 months (except the Heparin that was only for a few days, then i was on Warfarin for about 6 months and the insulin injections that was for around 2 weeks). Was also hooked up to something where they could see whether any fluids were going near my heart, which they had to check every 4 hours for at least a week. Most of the other drugs i stopped after 6 - 10 months, apart from Prednisolone and Cyclpohosphamide. I was on the Cyclo for 2 or so years, and Prednisolone until 2010. Presently I am not on any medication at all. My Kidneys are doing great (for someone with my history as my Dr once said to me, i took that to mean i was probably on a 5 or 6 out of 10) This was in 1994 (that's why my memory is a bit sketchy). I only have appointments every 6 months now, at one stage in 1994 it was every week. x

  • Wow, yours is an amazing story LoydE! It's great to hear that you are doing so well, despite the fact that it was touch & go back in '94.

    The doctor mentioned Cyclophosamide would be a possible treatment, so I will research a little on this.

    Many thanks again for your help & support. Stay well my friend. X

  • The problem with drugs is that you may not get any of the side- effects, or you might get them all. I tended not to look up too much, but then again that was 1994, when the web wasnt great for accuracy. According to the web back then I wouldn't have lasted 3 years!! And it is no problem helping at all. x

  • hi roobard, nephorologists are fantastic doctors and will really look after you,like lloydE said you will prob have urine and bloods done,take a sample with you as they can dip stick it there and then then prob send it off for futher testing as dip stick test arent very accurate they are only a guide,they will take your bp,examine you,ask you loads of questions then they may suggest a kidney biopsy if they think your lupus is active within your kidneys but its all down to the Doctor and how well your kidneys are working,please dont worry you are being well looked after,good luck xx

  • Thank you poodlegal, I saw a lovely nephrologist today. So feel confident I am in safe hands. X

  • When my daughter was referred to the nephrologist she had a kidney biopsy (painless but uncomfortable) and it was found that she had Class 4 kidney involvement. She is now on immuno suppressant tablets and the nephrologist sees her every 6 weeks for bloods and a general check up.

    Good luck :)

  • Thank you largesse, it's good to hear your daughter has had a positive outcome & is being well looked after. Do you mind me asking what immuno-suppressants she is taking?

  • She is taking 1 gram of mycophenolate mofetil (Cellcept) twice a day. When she first started taking them they did upset her stomach but this subsided within a week or two.

    She also takes 200g of hydroxychloroquine and is on just over 6g of steroids.

    Good luck to you. I hope all goes well.

  • Taking a sample of urine with you and drink enough so that if they want more you can provide more. They test your blood pressure as kidney problems show up in the blood pressure. Sometimes they may want a 24 hour urine collection. This can be done from home if you can take the urine to the hospital in special containers. Kidney biopsy is often done to see if the lupus is in the kidneys. Its a very minor procedure but they get a lot of information from it. There is also ultrasound scans.

  • Thanks Herb. I am doing a 24 hour urine collection, bottle not designed for the ladies! My husband seems to think it would be funny to put some our cat's pee into it, just to see what the lab think of that. Yikes!

  • This is a quite a silly question, but I always wondered how women were able to do a 24hr urine collection in that bottle (without making a mess). It is not female friendly at all, I would have thought they designed a special one one for women lol.

  • When you are pregnant you get a wide specimen bottle! But I agree - it's not user friendly for females lol.

  • When I said 200g I meant 200mg and 6mg!!!!

  • I can't remember how I got it in the bottle (it was about 25 years ago), the one I had was like those 5 litre containers of vegetable oil, washing up liquid etc. I clearly remember carrying it on the bus, I was embarrassed a the time as I was sure everyone would be looking at it and know it was a big bottle of pee. Maybe I used a smaller jug to pee in then poured it in? I know I do that when I have to take the urine samples in the little specimen bottles. Its a glass measuring jug I use in the kitchen, so I hope my paramour does not read this, he would find it revolting (smile). My kidneys seem ok now except for small quantities of blood on all my samples. I have had my bladder checked out and the urologist told me it must be coming from my kidneys.

  • It sounds like it's the same kind of bottle after all these years. I'm using a jug too, it's the only way. There are lots of 'pee pot' jokes in our house at the moment!

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