Hi all
I have been diagnosed 2 weeks ago with SLE and it’s currently active. I also have lupus nephritis (LN) class 3 and now on MMF, steroid and anti malarial drug.
Has anyone here had LN before? I am worried, physically and mentally tired and scared.
I am trying to be calm but it’s taking time. Need advice from you. Thank you
Hello n_p,
I havent nephritis, but there are a few members here who have, so I hope you hear from them in due course. Meanwhile, is there anything in particular you are worried about? It's always a scary business, and Im sure pretty much everyone here has had their fair share of feeling scared and alone. Hopefully you'll find some comfort from this community. Welcome, anyway x
Thank you whisperit for your reply.
My rheumatologist and renal doctor have put me on immunosuppressant, I started 4 days ago and I do hope it works. And I have started to see shinny things followed by headache, went to A&E because I worried it may be vasculities in my retina but luckily there wasn’t. They think it’s a migraine.
I find it really scary because it seems unpredictable...I am trying to be calm and not thinking bout the next day.
Ugh, that sounds horrible. But you were only diagnosed a couple of weeks ago, and started on these meds very recently? I think its quite usual for the first few months to be very rocky as your body adjusts to the meds - they are pretty heavyweight things after all - but with luck it will get smoother as you learn what doseage works best and the primary flare dampens down. I certainly found the early months a pretty scary rollercoaster of symptoms, and now feel a bit clearer about understanding whats 'important' and i can manage myself. But yeah, its a rocky road. Sharing with people here really helps me. x
Thank you whisperit. Certainly there was a lot going on past couple of weeks, diagnosis, kidney biopsy, new medication, new symptoms. But I know for all of us, it will get better or we will adjust to it and learn about our own body.
My family has a lot to take in and I know for them to feel better, I need to be calmer and stronger.
Will have my Rheuma appointment next week.
Please feel free to share if anything bothers you and thank you x
SLE diagnosis is a scary thing - there's comfort to be found sharing here because we're all scared, but you know, there are ways to finding your new normal and plenty of folks here can help out with that...best I can offer is try to reduce stress - tricky, I know - but stress feeds SLE, so do what you can do and know there's help on hand here
Be well xxx
So sorry to hear this. I joined this forum as it is my 15 year old granddaughter who was diagnosed with lupus (sle) at the start of december 2019. It has affected her brain, and thankfully after rituximab and cyclophosphamide infusions she is now starting to get better. She also has nephritis, so now her brain is getting back to normal she will now get the gold star treatment for her kidneys. Luckily with her being a teenager she is being treated at manchester childrens hospital and they are fantastic. Hope you get well soon. Try not to stress, nothing is worth getting in a state over. Hope you feel better soon.🤤
Hi, thank you for your post.
I am the one with SLE myself but I certainly know it is hard for family to see their loved ones going through all these. My family is in the same state now.
But I’m pleased to hear that your granddaughter is getting better and I hope she will get even better 
I have read some books, positive mentality helps though I’m learning too! Goodnight x
Good morning. It is really hard for any family, to be honest we just didn’t know anything about this illness, at times it felt like 2 steps forwards 10 steps back, i am sure with the right meds you will get there. There are so many different symptoms with lupus and some harder to deal with than others, the people on here are brilliant and you will find all the help and support here. Stay healthy and positive, things can only get better.
Hi Panda! So sorry to hear about your current situation. I do not have nephritis but there are a few people active on the forum who can help guide you. Kitman1 is one that comes to mind. There was also a poster from a while back I think named November90 that went through exactly what you are going through.
Steroids will help quell lupus nephritis until the immunosuppression with MMF and hydroxychloroquine have time to take effect. This may take months.
Hang in there! Sending hugs your way. Please keep us up to date. ❤️
Hi Jmiller623,
Thank you and I kept thinking steroid and immunosuppressant are like magic pills and work straight away haha and now that hearing everyone’s reply, I understand that they take time and I should stop thinking if they work for me 🤨
Will keep you all updated x
Hi new_panda really sorry to hear about your new sle diagnosis. I have lupus nephritis but I have class 5. Mine didn’t come straight away maybe a year after diagnosis. I was also put on hydroxychloroquine, steroids I was also put on maximum dose of mmf.
Which does have quite a few side effects but is a brilliant drug for lupus nephritis.
I then also went on to have infusions of rituximab which ended up been my wonder drug. It took 4 infusions over a year but really worked wonders for me. I also take tacrolimus which is to try control the amount of protein leakage.
It sounds like you are in really good hands to be on the treatment you are on 2 weeks down the line. Feel free to message me etc if I can help in any way. I know it’s very scary
Sarah x
Hi most points have been covered. But as you have only recently been diagnosed and on steroids. . You need to remember that the steroids are just starting to take back control of your body so wearied things will happen.
The important thing to remember is you now know what s wrong and you can take the steps to live with it . Says me who was very slow to come to terms with his SLE diagnosis.
Important points to remember don't worry or stress yourself in anyway.
Eat the right food . don't sit around more than a hour at a time. ( I don't mean to do physical exercise even if you just move around and make yourself a drink).
I really hope this helps a little every body on this site now s what you are going through.
My headaches stopped after a while.
Hi Biff240
Thank you for your post. If I may ask, have you had migraine as side effects from steroid or any other medication in particular?
Have a happy Sunday!
Hi new_panda
Same pinch dear. Our problem is very much similar. I was diagnosed with the same last year march"19. Mostly the same medication. Don't worry. All is going to be well. For past one year, me and my family, along with the doctors, has managed to keep this problem under control. The damage is though irreversible. But I am dedicated to make my future, a better one.
I hope you are not that weak as I was (actually, even walking was very tough for me in the very initial). The entire year passed in gaining my strength back.
Being scared is fine. This would work as a negative motivation for us. We need to maintain a very strict and balanced lifestyle along with the medications.Need to abide by the restrictions like No Stress, no sun, no alcohol, less salt, less sugar, less fat, etc. But the 1st step is to Accept ourself with this. Then only we could sail through these rough tides. Our New normal is quite different from others. For past 1 year, I have kept myself confined to the house. I am too worried about starting my professional life again. My confidence is shaken. But, with every passing day, I have to keep myself motivated to not to let this problem stop me from letting me live my life (as many days).
But plz don't worry because this would increase your stress level which in not at all good for you.
Last thing to add. This forum has really been a blessing for me. The members here are kind enough to support us and provide us with worthy information, based on their own experiences. Plz feel free to ask what ever is bothering you
As everyone said, these medications and the problem itself will show various side effects on your body, gradually, which would lower down.
I would repeat it again.... Accept yourself first, rest all will get in terms with ur body very soon. Follow the docs instructions and medications very carefully... And lead a happy and healthy life.
Tc
Hi new_panda,
Sorry to hear about your diagnosis, it is a very scary time at first. I have Lupus Nephritis and have had this for 12 years since aged 16. Please try not to be too worried. I know that is much easier said than done, but you are on the right treatment now and I’m sure they will keep a very close eye on you. That is one good thing about having kidney (or any organ) involvement; they do really take good care of us and monitor frequently. The kidneys are absolutely amazing and can keep you functioning without much problems even when they are really damaged. Just to put things into perspective, I have CKD stage 4 as a result of Lupus Nephritis, and I am a full time student doing an extremely intense masters course, can go to the gym 5 times a week and study, see friends etc at the weekend. Don’t get me wrong, sometimes things like fatigue, itchiness, swelling etc creep in and Obviously everyone is different, but I think so many people get frightened as soon as they hear kidney involvement, but these little things are incredible at keeping going even when they aren’t doing so well themselves. Especially with you being on treatment now, hopefully things will stabilise and may even improve. The key is to nip any active lupus in the bud to stop further damage. Keep an eye on your BP and try to lead a healthy and active lifestyle with minimising salt (this is the advice of my nephrologist).
Any more specific questions please don’t hesitate to ask and I wish you all the best!
Hi ecc_active,
Thank you so much for your reply. I really do feel a lot calmer after sharing my thoughts and hearing yours. You are doing amazing and I am motivated 
My docs are lovely too and I am grateful for all these. Yes, been on low salt diet, I have cut almost all processed food especially it’s now active. I will do what I can to make my body feel good.
Are you on MMF too?
Thank you and have a lovely Sunday x
You are most welcome, and I’m glad you are feeling a little calmer sounds like you are on the right track re diet etc and yes, definitely do what makes you feel good and as stress free as possible. I make sure I do some kind of yoga practice at least once a week as part of my exercise regime to help mentally stay well as well as physically
Well, I was on MMF however it put me in hospital as I have an intolerance to it. Although tbh before that happened it was working well, particularly regarding proteinuria levels. But please don’t be scared by this, a lot of people take it without problems, and hopefully you will be one of those people there are always alternatives as well if needs be...
So glad to hear you have lovely doctors, makes such a big difference when you feel well cared for
Wishing you a lovely Sunday also and know the community is always here should you need anything x
What is MMF?
Hi tdbsnoball,
MMF is a immunosuppressant medicine, it stands for mycophenolate mofetil
bnf.nice.org.uk/drug/mycoph...
Hope it helps.
Hi ecc_active, hope you are well. It has been a bit depressing given the pandemic and having a flare while trying to adapt to the newly diagnosed SLE.
As I have had large amount of protein leak, I started to have oedema a month ago. May I ask if you experienced this if you don’t mind sharing? How long did it take for yours to go away? I can’t really do much now as it worsens throughout the day.
Take care x
Hi
I had my first flare up of LN in May 2018. The hardest part was convincing the GP to refer me which he didnt do. In the end I walked into A&E and refused to leave until I got a diagnosis. It took 5 days and a kidney biopsy (level 4 reversible damage) but Hammersmith Renal dept were fantastic - started treatment within 48 hours and I gradually improved.
I wont lie - it's been a tough road. Started MMF in June for a month with lots of GI side effects so started Omeprazole to reduce acidity and it helped. Not meaning to scare you but with lupus you are at higher risk of blood clots and I got 3! The first in July I had excruciating pain but was dismissed in the A&E dept as muscle pain until I ended up with 3 a week later and was admitted -again at Hammersmith.
Then treatment sucked as they stopped MMF and started Prednisolone (steroids) and Cyclophosphamide as my kidneys hadn't improved at all in a month. It's often used as a cancer drug and I had nausea & vomiting the day after the infusion but on the whole it was not too bad and the kidney function came back to normal over a few months.
Was back on MMF for a few months then stepped down to Azathioprine with Hydroxychloroquine to control the joint pains. So after a long nearly 2 years I feel like I'm back to my normal self. The fatigue was unbelievably draining and it took a lot of time for me to feel like I had energy again but now I do.
I feel like I've come out the other side and you will too. It was a long hard road, tough on my husband and daughter too, but you will eventually feel better. The treatment is to suppress your immune system so you do occasionally pick up bugs going round but you still feel tons better than during a lupus flare.
I'm sorry this post is so long but I wanted to give you some support in dealing with this and to know that there is light at the end of the tunnel. Feel free if you want to ask any other questions - I'm a pharmacist but when I was on the receiving end I was scared too - although thats mostly gone now and I'm focusing on maintaining a healthy balanced diet now.
Take care
Hi AR29980, thank you for sharing your story. I do feel a little calmer that all of you here is telling me I will get better eventually. I believe in that.
The flare and the medication leave me feeling not being myself. I get tired even just after having breakfast, then I have to go to bed to lie down. Some days when I feel calmer, and new symptoms or side effects creep in... it’s tiring.
Like you say, it’s not easy initially but I will get better and better. Will keep you updated. Have a nice week ahead x
DIAGNOSED WITH SLE AND RAYNAUDS PHENOMENON
Recently Diagnosed with SLE and looking for help.
Newly duagnosis of SLE
Newly diagnosed - Struggling for answers
Newly diagnosed and stuggling at work
