Class 4 Lupus Nephritis - Similar experiences anyone?

[rooks1984]

Hi all,

I am a 28yr old female who has was diagnosed with Lupus Nephritis (class 4) about a month ago. I wont lie it hasnt been an easy ride both physically or emotionally and it does feel like my whole life was turned upside down. Luckily my family have been amazing and very supportive and which has been a God send. I am currently on 50mg steroids and 200mg of Mmycophenolate mofetil as well as 8 other drugs to manage blood pressure, Cholesterol protect bones, anti blood clotting and other Lupus symptoms etc. They had to give me IV steroids in hospital initially for 3 days as the Lupus was so aggressive and the kidneys were badly affected. The doctors are seeing a slight drop in protein levels in the urine but the levels are still very high. There was a good drop in the first 2 weeks from 4000 to 1300 but thats stuck again and not moved for a week. The consultants are great and explained all in detail and they say they may have other medications they could try if they dont see further improvement but due to the nature of Lupus and kidney involvement it is a case of a waiting game for the remission to kick in.

I was wondering if anyone else has had any similar experiences that you can share, what worked for you, timescales and treatments that were helpful. Or any tips or words of warning/advice would be fantastic.

Thanks so much.

Rx

[pattismith]

I was in the same place as you are now 2 years ago. I had to have intravenous chemo and high dosage of steroids to start with, I have a wonderful Renal const, who explained everything at every stage. Have to be on a whole cocktail of drugs, gradually increasing dosage and introducing additions along the way, very much as you say trial and error. Things take time to settle down, and i'm glad to say 2 years on and all my levels seem to be stable, so keep taking the meds and hope all goes as well for you as it has for me

[pattismith]

Ps, if you want anymore info or advice or to ask anything in particular feel free to ask - just tried to keep it short and simple so as not to overload you

[JenniferZhou]

I was diagnosed with this 2 years ago and it's only just now relatively become under control.

I started off with Mycophenolate along with prednisolone as well as other drugs. I went into remission for about 9 months and then relapsed.

I was then put on Mycophenolate and Tacrolimus together which put me into a partial remmission for about another 6 months. However, the immunosuppression from this resulted in a severe episode of shingles and I was hospitalised for about a week.

My latest flare put me in hospital for 2 weeks and in Jan I completed a course of cyclophosphamide. Probably the most brutal treatment so far especially as I was also trying to deal with my 2nd year of uni! But, as horrible an experience it was, it's the only treatment I've had so far where I could actually feel improvements and felt better. Everything is currently stable apart from a little protein in the urine that doesn't seem to want to go away!

But yes, it's all about waiting it out I guess and having a good consultant who explains everything to you is always a help. With advice, the only thing I've been advised to do is stick to a low salt diet.. Any questions, feel free to ask

[rooks1984]

Thanks so much for sharing your experiences with me. Wow I didn't realise it would take that long to get under control. I know I had to wait and be patient I guess the timescales are always going to be a grey area. I have been off from work a month now as any activity causes severe swelling in my legs and ankles. I'm constantly tired and run down and my back aches too. There other symptoms which I guess you both are also aware of which the list is endless. I'm very lucky my employers are understanding and have asked me to follow doctors orders and not to worry. I guess its more of a personal thing of me wanting to get back to normality and start living life as normal as possible. Its only really just sank in how serious the condition is but I dont want it to stop it from living my life. I try to be as active as possible but its pretty diffucult with the tiredness, aches and pains and swelling etc.

How long did it take for you both before you were able to start doing normal day to day activity? Were you able to start doing things even though you were not fully in remission? I do understand it is different for all individuals so its just to get an idea really.

I have also been following the very minimal salt diet and also been asked to be careful with high cholesterol foods and too many sugars to to diabetes risk as a result of the high dose steroids. I have been following this strictly so hoping this will help in line with the meds.

Thanks again x

[JenniferZhou]

It has differed between each flare/relapse. The first flare when I was diagnosed, I was in hospital for around 2 weeks but once i'd been discharged I recovered pretty quickly and was able to do activities without too much trouble.

The second and especially the most recent flare affected me a lot more and I had to take almost 2 months off uni just to basically sleep and recover. Now, even 6 months on I can only manage to do the bare essentials of day to day things before reaching my limit. You just have to learn to prioritise and know what your limits are, and not to push them.

[lucyloo023]

Hi,

I was diagnosed with stage 4 nearly 2 years ago after a kidney biopsy. I was on 60mg steroids and 3000mg mycophenolate along with blood pressure and water tablets, inhalers etc. I am now in remission and doing really well. Steroids are down to a maintenance dose of 5mg and mycophenolate down to 2000mg. Still on all the other tablets along with hydroxy which is probably the drug that made the most difference in how tired and sore I was. I catch colds all the time and have had shingles but my gp is great and gives me antibiotics which sorts it out straight away. I was off work for six weeks and went back on a phased return. I have had to reduce my hours but this has been a good thing. I'm very careful to rest on my days off and not over do things. It does take time and I think the hardest thing is accepting the limitations lupus puts on your life. But try and stay positive as much as possible. Renal doc says me having such a positive attitude to it all helped things go as well as they have done. Although I do know it'll not always be this way, and that it will probably appear back im enjoying this time of being well. I have been very lucky in that it was picked up so quickly (four weeks from first symptoms to bring diagnosed) and also I don't have a lot of the other problems that go along with lupus. Only the nephritis, fybro and sjodrens which is really little compared to my other lupie friends.

Sharon xx

[LloydE]

In 1994 I suffered renal failure stage 3 (I think it was). Apperantely on a scale of 1 - 10 10 being fine and 0 being dead, i was on a 2. Had i not been admitted into hospital, the next day I would have needed a kidney transplant and the day after that I would have died. So i have Lupus Nephritus pretty bad. However over the years sticking to the Salf free, low potassium etc diet, the medication (mainly steriods however when i was admitted into hospital i was on 40mg of prednisolone, 150 rantidine (I think) 500mg Calcium tablets, 300mg frusamide, 2 injections a 24 hour drip of heprin and 150 Cyclophoshamide) my kidneys are now around a 5 or 6. The 1st few months was the hardest as I was getting used to the change in my eating habits ( i used to use salt a lot) but after a while my tastebuds got used to the new tatse of food.

Mentally it was a bit easier as i had already had Lupus for 4 years (and previously it almost killed me) so i was used to having a serious illness. One thing i learnt was your emotional state of mind does not alter the fact that you have Lupus. If your depressed you have Lupus, if your happy you have Lupus. This wouldn't work all the time as with depression you will always get bouts, but I used to have them a lot less when I took that approach to life.

Most of the medication I was on was for around 8-9 months except Cyclophosphamide which I took for 2 and half years. I went from weekly hospital visit (sometime twice a week) to every six months after around 8 weeks. it stayed every six months since 1996ish until a few years ago and it is now once a year, with yearly urine, and cholesterol test. I am not on any medication at the moment and have not been for around 3 years.

My doctor did say to me that drugs work exactly how they are supposed to with me (the only side effect I had was vomiting, which I hate). I do believe ones mental state goes a long way to help recovery (see placebo experiments).

it does take a bit of time but eventually hopefully you will be absolutely fine.

if there is anything you want to ask feel free.

X

[rooks1984]

Hi all, thanks so much for sharing and for the kind words of advice its really appreciated! I am very lucky my family and close friends have been very supportive and really helped in keeping my spirits high while really making an effort to understand what I'm going through too. I guess its still difficult when you feel it yourself. I'm slowly coming to terms with it all though so trying to have as much as positive mind as possible. Its just a shock that couple of months ago I was in full swing at work, out socialising, planning holidays etc and now I can barely be active for more than half hour without getting tired and my ankles turning into something like nutty professor.

I'm keeping my fingers crossed that there are no further complications along the way and th meds starting kicking in more. I am following docs orders and really taking care of my diet too so hopefully this will help.

Fingers crossed!

I may have more questions along the way so please forgive me if I randomly pipe up now and again with random questions.