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LUPUS UK
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Hello all-new here! Just been diagnosed lupus nephritis

Been in hospital and off work, back home and slowly getting stronger and used to the medication and side effects! Anyone else out there got any experiences of lupus nephritis? Thanks

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Hi there,

I too was diagnosed with Lupus Nephritis about 3 months ago. I assume it came as a bit of a shock to you as it did with me? I had never heard about Lupus before I was diagnosed and it really knocked me for 6z I have been under treatment since with lots of meds and yes there are side effects but on the plus side they have helped saved my kidneys and I'm slowly going back to work as of 2 weeks ago. I'm currently doing 4 days a week. Yes it's not the same but getting there slowly and there is light at the end of the tunnel when you learn how to manage a new lifestyle. I won't lie I still have ups and downs but stay strong and positive and it does help. I know it's easier said then done. This charity, the site and the people on here are wonderful and are a fantastic support! Let me know if you have any specific questions and I'll be more than happy to help if I have the answer :)

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Oh yes it was a big shock... Had slight swollen ankles and joint pain- never thought of kidneys or lupus!

Yeah it has knocked me as well big time, massive lifestyle changes for me but I know it's still early days. Your comments that it gets better does help me keep positive.

I was shocked to have gained a stone in fluid retention- the water pills seem to have worked thou and I have lost it. Did you struggle with fluid, you taking tablets?

If you don.t mind me asking what meds u are on?

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Hiya,

Yes that's how it started off for me too. I also had very puffy eyes every morning when I woke up like I'd had an allergic reaction. Luckily I knew what my father went through when his kidney failed and had to have a transplant. It was nothing related to Lupus but the kidney problems caused swollen feet so knew there was something wrong. Just didnt occur to me that it would be something like this at all!

I would advise that you keep to your meds and have plenty of fruit of veg (unless your doc has advised otherwise - as different people have different dietary requirements depending on if the Lupus has affected you in different ways). One thing that helps everyone is avoiding processed foods. Gentle exercise, dependent on what your body lets you do also helps. But if you get a little tired don't push yourself and don't get disheartened if you get tired either its normal and will get easier. Trust me! Be honest with your doctor about exactly how you are feeling and don't be afraid to tell them ever single symptom you re feeling irrelevant if you think its important or not. Its important for them to know the whole picture so they can balance your meds and side effects accordingly. It helped me to keep a diary and a question list so and I take the notebook to every appointment.

I was diagnosed with stage 4 nephritis so was i pretty bad way and as soon as they got my biopsy results they admitted me into hospital and I was given steroids intravenously. I put on at least 15kg in water weight and felt like a beached whale. The water tablets helped but I was also put on a low salt diet which I am still on now and have gotten used to it too. Other meds I'm are:

- Prednisolone 20mg (this has been slowly tapered down from 60mg)

- Aledronic acid to prevent osteoporosis

- Astorvastatin (to manage cholesterol levels as the steroids and lupus tend to increase levels)

- Mycophenolate Mofetil (4 x 500mg) to suppress the immune system

- Rantidine (to limit gastric reflux)

- Levothyroxine as I suffer from an under active thyroid too

I was on a lot more meds which have slowly been cut out over the past month including blood pressure tabs. These unfortunately spiked my potassium levels to a dangerous level so stopped these. I have to monitor my blood pressure closely be extra careful with salt/sodium intake as a result. Although I stopped the water tablets a month ago I had to restart them recently as the swelling in the ankles started to come back, although the kidneys were on the mend the steroids also create water retention too so the doc has put it down to that.

How are you coping now? happy to be a newbie lupus nephritis friend f you need one! I'm still learning myself but happy to share my experiences and any tips I come across if it helps :)

R

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I feel a lot better than I did that's for sure. I was in bed for 2 weeks, then hospital for 5 days, then been at home for about 3 weeks resting. Started going for a walks this week, am back cooking tea and food shopping and stuff but not quite ready for work yet. Am a police officer and was very active before this so I hope I can get back to fitness soon.

What exercise do you do?

Great tip re making notes of symptoms- I always forget stuff!

I am on 60mg pred still, and 2x500 MM. Plus warfarin to prevent blood clots and other drugs for stomach and calcium tablets-I got stage 5 and a little bit stage 3.

Find all the tests and appointments a pain, got blood test wed and back to consultant fri hope he can reduce the pred! How often were u seem by specialist?

The water weight thing is awful-really uncomfortable. I hope the tablets sort it for you.

It does really help to chat with people going through same!

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I'm glad you are on the mend and there are imporvement, At first it does seem like it is slow but maintaining the right steps as advised by the doc definitely helps. i was also in and out of hospital in the first month and was off work for 2 and half months. It wasnt easy as I really enjoy my job and am really career driven. Thankfully my employer was really supportive and didnt give me unneccesary pressure (i hope yours are the same!) . In terms of excercise I started off gentle walking on my treadmill. Initially I only lasted all of 5 mins but then built it up to longer periods and to gentle jogging. I also found meditation helped with the worry levels. I have read that yoga and swimming is also helpful.

They will hopefully reduce the pred soon...they have to taper it slowly otherwise it could have adverse effects if they try to reduce to quickly. The preds gave me the most side effects so including the damn moon face which really knocked my confidence (i know its vain but as its so noticable it made me really paranoid about my looks :( ) I can understand why you would want to lower the dosage asap. At the same time the pred played such a critical role in reducing the inflammation on the kidneys. Thats what helped me accept them a little better anyway!

In the first month and half I was seen weekly by my nephrologist and had weekly bloods too. this was then increased to fortnightly and now its a month gap. I did ask if there was any questions what I should do and mad sure I had contact details either for the doc or the secretaries. Dont be afraid to contact them if you need to even if you have appointments in a week etc.

Oh i forgot to say the water weight has reduced significantly and i'm actually down to my normal weight now! People actually ahve commented and say look thinner then before I got ill (apart from the face unfortunately). If you want something inspirational and positive to watch you can watch Nick Cannon's short docs on his diagnosis and how he coped. Its a little bit cheesy but shows that it can be managed and we can have a near to normal life!

Heres the link:

Theres about 11 episodes. Enjoy!

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Good morning. The Nick Cannon videos are brilliant- really great. Thanks for posting- brilliant to see how strong he is. I love him, Mariah as doting nurse cool too!

My job are very supportive. Help me ease back into it. Look forward to going back, normality again!

I totally understand the vanity thing. I feel the same. My body is changing already and I hate it. I do try and think drugs making me better etc but its only human to worry about looks! My friend was on pred for a while, she got a swollen face. She is now off it and face is normal again so I focus on that.

It sounds like you doing ok weight wise and exercise wise- that makes me feel confident I can do same!

I have heard re the renal diet. My consultant didn't really mention diet- I shall ask him. I eat reasonably well anyway but maybe too much red meat! I am trying to just eat 3 times a day- meals with meds in am and pm have kept belly ache at bay so far! How did u sort your diet n what does it include?

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I was diagnosed just over 2 years ago now when I was 17.

Since then I've gone into remission, and then flared again 3 times and have had a lot of change in meds. It is very tough, after each flare it's taken a long time to recover and I'd been at uni each time so I couldn't really have much time off. It does get better though, and at the moment I'm the best I've ever felt. It's just a matter of getting the right balance with your meds.

Any questions I'd be glad to try and answer :)

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Jennifer

Hi there, very good to hear that you are at a good place now! Really positive. Thinking back to when I was at uni it was a manic time so having lupus at same time must have been difficult. Great that it gets better.

Do you mind me asking re your flares? What happened? What did you do etc? And what medication you are on now?

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For me, my flares generally come with very tell tale signs. Before every severe flare I've had, I've experienced bad dizziness followed by intense stomach pains and vomitting. Basically if that ever happens, my doctor admits me straight away as an emergency. When I'm flaring I usually experience a lot of swelling, and my bloods go crazy (very low albumin and dangerously high potassium along with others). I'm usually in hospital for at least a week when this happens.

As for meds I'm currently on MMF, prednisolone, omeprazole, ramipril and Calcichew d3. But, I've also tried Tacrolimus in the past, and completed a course of cyclophosphamide earlier this year.

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How are you finding the medication? Side effects?

Do you mind me asking which class of nephritis you have?

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The MMF I actually tolerate really well. The only think I get with it is hair loss, which sucks. The other meds I've been on especially cyclophosphamide were really awful so I don't ever want to go back on it again.

I have class 4 nephritis but with stage 5 nephrotic syndrome, so a bit of both!

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hello and welcome to the group,i got dx 2 years ago,for 12 years I had a low white blood count so my gp sent me to a specialist,the more blood they took the more they discovered,at first I was told I had mild lupus but just by luck they asked me to do a urine test,i was leaking 4 pluses of protein and blood,i felt fine,i had noticed my eyelids swelled up on a morning and puffy feet,never dreamed it was kidney related,had a biopsy and within 4 hours I was on alsorts of drugs,blew up like a balloon from steroids,horrible water retention and chipmunk cheeks!! that was the worse bit looking back,i so know what you are going through and its bloody horrible,your looks and body change,you worry not only at what you have now but what you may get,the more you read the less you want to know.....please dnt worry,you do eventually except,understand and get on with life,at the moment im waiting on a call from my doctor with my blood test results to give me the go ahead to try for a much longed for baby,this site is brilliant and has helped me so much because I really did think at one time I was the only person in the world with lupus,take each day at a time you will look back in a few years and proberly be giving someone advice who has just been dx on this site

take care xxxx

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Hey poodlegal

Thanks for advice and it is helpful to hear others stories!

The baby thing is very positive too- hope all goes ok

I was apprehensive of using this site, but its really great

Thanks

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Hi heights69

Hope ur well, I was diagnosed with lupus 3 moths ago and was in a really bad state mine stated just after I had a miscarriage, swollen feet, joint pain , rash on face, rash on legs and then cunt walk afew steps to go to the bathroom, was thinking I was getting better but things were getting worse so was admitted to hospital and stayed there for 2 weeks.

But nw gladly I'm much better then what I was just feel extreme tired all the time, meds r being reduced so that's a good sign,

Just stay positive and the meds sud help and hope u feel better soon

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Hi!

I was diagnosed 20 years ago!!! I am 39 now. I presented with kidney stuff as well!!!! I have stage 3 kidney disease... But not sure what ur talking about when u say stage 4 kidney but stage 5 nephrotic???

If you have any questions I would be happy to answer!!!

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Hi Heights69

Please accept my apologies for the delayed reply! Glad you liked the videos!  Own personal strength emotionally and positivity definitely helps. How have you been feeling recently? I hope you have been able to make improvements?

It’s good to hear that your employer has been supportive too It makes all the difference hey? One less stress to worry about. And believe me the last thing we need is stress when going through anything like this.

Did you get any answers from your consultant on diet? I was advised to minimise salt/sodium to less than 3mg a day due to the high blood pressure and kidney problems. That’s less than half teaspoon. That means monitoring was in pre made foods too like bread which has high salt content. I’ve reverted to avoiding processed food as much as possible and having far more fresh fruits and veg and making all meals fresh where possible. When I have the energy to I even make my own bread and experiment with different flavours just herbs etc. to get used to the lack of salt. Lemon is a good sub instead of salt in my cooking.

With regards to snacking and keeping the hunger at bay with the increased appetite due to the pred I have been having fruit as snacks. One other tip as random as it sounds is eating baby snacks haha. The Organix Goodies range is good as its natural and no added salt or junk  I would strongly advise still checking with your doc though as each individual would have different dietary needs just in case yours may have other considerations. I wouldn’t want you to limit foods where you don’t have to either! One food all Lupus patients are advised to avoid are Alfalfa sprouts and Echinacea. Any herbal remedies you should check with your consultant before taking too as some may not bode too well meds you are taking.

I hope that helps? Any other questions feel free to let me know!

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No problems! Welcome back. Hope u r well

I have been consultant a few times, steroid lowered but was feeling out of it-slightly better now! Been gym a few times and walking which is good and lost water weight now so no more water pills!

Start to think re work when brain back in gear!!

He said I don't need a special diet, but am trying to be careful and eat more fruit and stuff! I didn't used to eat bread or many carbs but I need to line stomach for meds so have to which is a pain as they make you gain weight! Hard to eat that little salt

U on BP meds? How u think them? Doc says I may need em. It's funny how it all comes at once- BP issues and things I never had before diagnosis and the drugs- I blame that!

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