Class iv Lupus Nephritis

[Dusty]

Hi, I was diagnosed with SLE 3 1/2years ago & then 3weeks ago class iv lupus nephritis was confirmed after a kidney biopsy.

I've been put on 40mg prednisolone as well as mycophenolate & ramipril. Does anyone have any experience of this? My husband and I would love to have a 2nd child and this has been a big set-back for me so was wondering how long treatment will be for, see my kidney doc in 2weeks so will obv be asking her lots!

[janiceray]

I Know of 2 Lupus people with Nephritis and they are back to living as before with only Lupus to worry about,but they do have regular check ups with the Kidney people.

I am not sure about having Children as these are passed the child age.

But put it on you list to ask???

all the best and please let us know about if you can have any more children

that if this comes up again we will know how to answer.

All the best

Jan

[lucyloo023]

Hi Dusty. I was diagnosed with sle and stage 4 kidney nephritis back in September. I was put on 60mg pred, 3g mycophenolate, ramipril, fuerisomide, calcium tablets and anti antacids. Medication has obviously worked as blood tests are showing kidney function ok and urine tests are clear. Steroids have been reduced over the last few months and am now down to 10mg and hopefully this will be reduced monthly by 1mg until I can come off them. Its a sliw process cos if they reduce steroids too quickly then it could bring a flare on and nephritis could get worse again. Mycophenolate has been reduced to 2g but have been told ill probably be on it for three to four years. I also started hydroxy as the start of the year and although to begin with I felt awful on it, I've stuck with it and I do feel loads better now in myself. Not nearly as tired and am managing to work two and a half days a week, hopefully increasing to three and a half next month

As for the children side of things, my kids are older and i don't want anymore so it wasn't a problem for me but I was told not to get pregnant when on mycophenolate as it is dangerous for the baby.

Make a list of questions for when you go back and try and take someone with you. My mum or Hubby always come with me as I don't take everything in but between us we usually get it.

Docs have advised me that when it is fully in remission it'll be a case of regular checks but I would have to keep an eye out for any changes. Obviously another flare could mean another part of the body being attacked but luckily for me its only the kidneys and joints this time.

Hope this maybe helps a wee bit. Take care and remember positive thinking goes a long way to helping recovery! Keep smiling

Sharon x

[charmaineholmes]

hi i was diagnosed with sle class 111 nephritis 2 years ago i was giving chemo for 8 months now on same drugs as you i did ask about having kids i was told that the chemo might of affected my fertility but while on the drugs should not try for a baby . i have been told i could be on these drugs for a couple of years so have to wait and see .

just stay positive and good luck .

all the best

charmaine x

[Dusty]

Thank you for your answers. I had a letter from my consultant today & a chat with my GP, cons put in her letter that she chose myco over chemo as chemo can cause infertility, she also explained when I saw her that I can't get preg whilst taking myco as it can harm the baby.

I think I'm just finding it a bit frustrating as when we had our first all I had to do was stop taking hydroxy for 6months before concieving but this time it's going to be a much longer, harder road

At least I have my beautiful boy!

[MandaM]

Hi I was diagnosed in 2000 with SLE and first stages i think of kidney failure. My condition was called glomrulonephritis, inflammation of the filters. I had 5 months of cyclophosphomide to try to knock back the damaging effects of SLE to my kidneys. This kept me going for 5 years until another biopsy and bloods showed my kidneys had all but given up the war with SLE. I did land up on dialysis and then had a successful live unrelated transplant, coming up for 6 year anniversary on March 8TH. I'd say get all the advice you can, follow instructions about your health to the letter and if you can have another child do so especially if your kidney disease means you'll end up with failure like mine. I was lucky and had my children young before any diagnosis and way before chemo. By the time i got to dialysis at age 40 i had my first grandchild, just! At 47 i now have four!! Best of luck with your treatments, hope all goes well for you and i wish you all the best to fufill your wishes of having another child.

[natash]

I was like you I had a kidney biospy in January and was told that I was number 4 Mycophenolate was perscribed which has reduced my protein outpuit from 900 to 40. My prednisolone was also on 49 m g but has been reduced slowly and now I am on 10 m g . My consultant says if the mycophenolate carries on working he is going to reduce it more.