Lupus nephritis : Hello everyone, I've just been... - LUPUS UK

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Lupus nephritis

Hello everyone, I've just been diagnosed with Lupus nephritis on to of my sle.....has anyone undergone treatment for this as I've been offered the choice of two.

mycophenolate vs cyclophosphamide

Ones intravenous and ones tablet ...any information on how you felt while taking either would be a great help...thankyou

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Hi there! I am also dealing with a quite early stage lupus nephritis. I am taking mycophenolate and it is as if I am not sick at all. All my SLE symptoms have basically disappeared (except for occasional fatigue, weakness, anemia and mild anxiety). My joints are no longer hurting and the doctors have been able to reduce my prednisolone dose from 20mg to 10mg because the mycophenolate worked so well. I personally haven’t dealt with any side effects, although the prospectus warns about some (such as diarrhea, stomach pain and headaches). Every person reacts differently to these drugs, but for me, this specific one worked amazing. Although I have to keep avoiding stress, sunlight or anything that may cause inflammation, I believe the mycophenolate is what brought my current remission. I hope I was helpful. Take care and keep us updated! Best wishes! 🤗

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Thankyou so much for your quick reply

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You’re welcome. Anytime!!

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Have you been advised to drink a lot of water while taking mycophenolate?

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I have not been advised specifically by the doctor to drink more water than I usually do, but since it is the kidney that is in trouble when it comes to nephritis, drinking a lot of water (and also diuretic drinks - I personally love drinking tea, so I drink a cup of diuretic tea every 2-3 days) is very helpful (whether you’re on mycophenolate or not). I know it is said that you should only drink water 30 mins before and 30 mins after taking the pill, but my doctor hasn’t advised me to do so.

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Thank you, you are helping me so much just by talking to me 🙂

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Hi Northernd, I was actually diagnosed 15 years ago with nephrotic syndrome initially until they found it was SLE I had. I was treated with 6 doses of cyclophosphamide and it worked very well, if I can remember I was only sick twice with it and spent the evening in bed afterwards, fine the other 4 times. In the last year I've relapsed and I'm now on mycophenolate as I've already had cyclophosphamide and it has helped steady things out but not improved things yet. I've also had Rituximab in the last couple of months but with lupus that takes longer to work unfortunately. The main side effect I have with MMF is diarrhoea every morning, it's just something that I will accept if things are going to get better. Hope this helps.

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Thank you kitman I'm leaning towards mycophenolate, do you have to drink lots of water on them?

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I'm not sure, I need to watch what I drink anyways as my kidneys have been affected again and have some odema

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It's nice to know people are having results on both treatments and that theres other people in the same boat...thank you so much for replying to my post

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Hello Northernd, that’s rotten luck to be diagnosed with lupus nephritis. Do you know what sort it is? I had Cyclphosphamide 6 x Intravenous monthly A few years ago. It was fairly horrendous for the first few days afterwards. But in combination with prednisolone it got the nephritis under control quite fast. When that was over I then took mycophenolate for a few years. This is the best Lupus drug I have ever taken. Very few side-effects, and it works. If they offered me a choice, I would go for mycophenolate every time. The thing is that we are all different and not everybody reacts in the same way. The renal nurse told me when I was having cyclophosphamide that some people do not react badly to it at all. I have also heard of people reacting badly to mycophenolate. But good luck with it all, whatever you choose.

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I have class 4 lupus nephritis had my first dose of cyclophosphamide on Friday.....fell asleep all afternoon and was violently sick most of Saturday....how many doses did you need before you noticed any improvement please?

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Oh, you poor thing - I didn't mention the vomiting because apparently it doesn't make everyone sick. But I remember it as the most violent gut wrenching sickness I'd ever had. Next time - get them to give you ondansetron (spelling?) beforehand and to take for a day or two after. I also had a problem with my bladder now that I think of it, after the second(?) dose. For some reason it wouldn't empty and I had to be catheterised.

But the good news is that Class IV nephritis is very treatable, and you will slowly start to get better now. You may not notice at first because the cyclophosphamide will make you feel like shit - but even that gets easier. I only had 5 in the end because it triggered a massive skin reaction (biopsied - it was drug induced lupus of the skin) - before going to MMF and steroid, tapering the steroid, and then just MMF, hydroxychloroquine and losartan.

Unfortunately mine has just come back - but I've had some proper remission for a few years (about 4.5 of them) - so although I am back on it now (MMF) I'm hopeful for a good outcome.

Massive good luck with it all Northernd - it's not pleasant, but it will work and you will get your life back eventually.

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Thank you:) I hope you go back into remission soon....so glad I found this group

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Thank you I mentioned ondansetron today because of what you said the doctor prescribed me 8mg tablets thankyou so much

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They are naughty not to give it you just in case. They told me they ‘forgot’ the first time - which is not a lot of comfort when you are puking your guts up ha ha!. Next time - don’t wait to get sick - take it beforehand. I was so sick that first time I couldn’t keep anti-sickness pills down when my son got some from the doctor so I just had to ride it out. Truthfully not the most fun I have ever had!

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I will take just before and after thank you, they gave me anti sickness but not ondansetron....they should just give it as routine procedure given it's for chemotherapy treatment....if you hadn't told me I would have just suffered after every treatment

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Hello northernd

I have got lupus nephritis class 5.

I have had mycofenalate for about 4 years now and has worked brilliantly for me. I did have to change to myfortic due to it been a bit harsh on my tummy.

But I currently have no protein leakage which is great because they believed my kidneys may of been scared.

I have had to also have rituximab infusions just to bring it under control but now the myfortic holds it fine.

Hope it all goes well for you whichever one you choose x x

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That is brilliant news I'm really happy to hear that

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Thank you x

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I've had SLE Nephritis now for a long time. I take Mycophenolate and it works for me, although some people can suffer side effects. I can't tolerate Cyclo -it made me really ill and I had to stop it. Lupus has made me allergic to a lot of drugs so I'm just pleased that Myco has worked for me. I was transplanted in 2002 and still take it. Good luck with your treatment xx

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I fell asleep Friday afternoon and sick most of Saturday

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In 20s dg with lupus and now 44 dg with LN Type 5, started Cellcept (myco) 1 month ago--had gi issues-gerd has gone away but still going number 2 up to 5-7x/day. I also feel ramped up-kind of like being on 10 cups coffee/day. I am going to cont taking it because even though it is a heavy duty drug it seems the least toxic from the other ones. Ofcourse not taking it is even more dangerous. Does your doc lean toward one or the other med? What class nephritis do you have?

Good luck!!!

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The doctor said it isn't at the stage of being in a class yet...he said we got there early but said both will work exactly the same at reversing the effects

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I think that's why the doctor has given me a choice rather than him choosing

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Did you have a biopsy? That is how they figure out the Class of nephritis I through V------I think he said you are not in a class of kidney "disease" meaning loss of GFR and kidney function.

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I did have a biopsy yes, the first thing u Asked was what class is it

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1st thing I asked sorry

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Class 1

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Right have the paperwork in front of me I got it confused, I have stage 1 chronic kidney disease...class 4 lupus nephritis sorry for the confusion

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OK--you definitely want to treat Class 4. Good luck and so good it was found early before permanent kidney damage.

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Thank you 🙏

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Hi Northernd,

In 2005 my kidneys were in a pretty dire state and I was told I was probably going to loose them. I was put on Miccophenolate for the first time - along with ( candersartan BP med to reduce pressure on damaged renal capillaries ) and a temporary high increace in prednisolone. I'd had my first renal flare in 1983 - but now my renal function is better than its been for many years.

I really like the Mico - as I think it's good for every bit of my body. I take the easy on the gut - myfortic version. As New England said - it rev's me up a little - but if this became a problem for you - you can get medications to - un - rev you. I've mentioned this hyped up state to Doctors - and I get the impression it's not a very common symptom ?

For me mico has really has been the most beneficial Lupus medication I've ever taken. It's helped with brain fog, headaches, pain - everything.

Having said all this I dare say the cyclophosphomide infusions are just as good.

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I'm hearing people saying it took 10 days for mycophenolate to have effect and feel great....do tou know how long for cyclophosphamide

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No, sorry I don't. The last time I took cyclophosphomide was in 1983 - in pill form along with 60mg of prednisolone. It was a different way of doing things back then.

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So you've had this condition a while then...have you managed to lead a normal life?

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Hello - Sorry - I'm from Australia - always a bit dazed and confused with internet stuff. (from the 20th Century)

YES...….once they managed to get the renal flare under control - and the SLE under control I was able to live a normal life. We're all different - but In between flares - I've been pretty much fine. With me - perhaps I've been a little more prone to fatigue - needing a few more hours sleep than others - but that's about it. You may not even have this problem.

It takes time for the medications to actually start to work and to feel the benefit. I know some people have said they felt better after ten days - but with me it's always taken a quite a lot longer (months) to actually get on top of a renal flare. Rest and lack of stress is important while you're going through this period - easier said than done I know because I know how horrific it all must seem right now - but once you get through it you'll strong again and be able to pick up where you left off.

Unfortunately it does take time.

xox

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I'm in the UK.....I have always needed more sleep than most and get fatigued very quickly, Christmas time is hard with all the shopping I have 3 girls....I'm so happy you all have responded in the way you have you don't know how much it means to me you have all put my mind at ease and given me hope again...thankyou 🙏

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Its important to follow what you're body's telling you and rest whenever you can especially right now with a renal flare. I'm really hoping you have friends and family that can help you get as much rest as possible as its possibly one of the best and most practical things you can do to make those kidneys heal more quickly.

(I had a tiny untreated renal flare once - (dodgy rheumatologist at the time) and I literally just took to my bed without any major change of medication) This eventually worked......for a while at least.

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I started going to a&e in February with sickness fatigue headache terrible pain abdomen and back and belching etc....I knew something was wrong...my partner pushed them to look further he suggested pancreas ulcers etc they didn't want to know.....they said it was a stomach bug and indigestion....to take rennie......they were all very early signs of kidney trouble.....all they tested were heart and lungs (because I had blood clots on my lungs in 2012 Hughes syndrome onset of lupus.....luckily my partner insisted I took 20mg prednisolone a day to try and it made my symptoms better..doing that probably saved further damage .....it took my ankles to swell before they tested for it so I'm deeply disappointed with NHS at getting things early.

As for getting treated at the renal unit at st helier I cannot fault them one bit it is by far the best treatment I've ever received.

It took them 6 months to test for blood clots in 2012 I nearly died...their excuse was we would have never expected you to get blood clots as i was only 28 then......but Hughes syndrome is a secondary disease to lupus.....there should be procedures in place for people with lupus to get tested if they present certain symptoms

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Yep...…..I couldn't agree more. Must admit - the same lack of validation and proper medical back up here too. Its very hard to try and live with the anger at repeated medical apathy, on top of the trauma of the illness. I have mild sticky blood, but this was diagnosed years after my first renal flare via blood test without damage. (one bit of good Doctoring at least)

I've never had much in the way of swelling - at all. In fact lack of external symptoms - has always been a problem for me. I'd been trying to get help for two years with my last renal flare - and like you - horrible gut problems......due in part to the renal problems..... also couldn't get out of bed due to fatigue - .I was told I had irritable bowel and was anxious......strange how a person can become anxious when they cant get medical care.

I'm so glad you're partner had the presence of mind to put you on 20mg of pred, but its bloody horrific that you had to figure it out yourselves. Not much comfort, but at least now with everything that's happened to you - you should end up with top notch specialists and frequent (three monthly reviews here) that will prevent this from happening again.

I've ended up with a nephrologist who calls herself a Lupus specialist, and right now I'm chasing down a more experienced Rheumatologist who will work with her. I always make sure I have two specialists who know enough about SLE - just in case.

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I couldn't have put it better myself....and with regards to this incident I see now as being armed with knowledge, as soon as any symptoms show in the future I know exactly what is wrong and where I need to go....medical staff need to start listening especially to lupus patients...they look at you as if you know nothing and their word is final...I've learned now to question everything and I know my own body....what medical staff do is put lives in danger when guessing what is wrong rather than ruling everything out....I hope you are ok🙏

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As bad as all this stuff is - at least its given us some - dark but clear insight - into the realities of medical systems we're dealing with. Its not a lesson any of us have to learn twice thank god.

I'm doing well now thanks. Good luck to you going forward with all this.

xox

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Thank you my friend 🙏 and to you too thank you for sharing your personal experience with this illness you have been a tremendous help....you all have 🙏

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Also does the swelling go eventually? I have swelling around my abdomen legs and feet...my clothes don't fit me anymore 😪

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Hopefully yes - the swelling should go. Have they given you a diuretic like furosemide? Drink lots after the cyclo infusions to flush it all through.

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No they haven't I've been drinking plenty of water....the swelling seems to have gotten worse after my first cyclophosphamide dose

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I think if it was me I might give it a few days, get plenty of rest (I know my kidneys function less well when I am tired or have done too much) and wait and see. But if you are worried - please go see your GP. Like all chemo, the cyclo is a really horrid kill or cure type of drug (except that it is proven to work for nephritis). I found the first week unpleasant, the middle two weeks of a 4 week cycle I improved and then I felt OK in the final week leading up to the next one. But your GP should be able to advise.

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I will thank you🙏

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Got given flurosemide today I mentioned it because of what you said thank you 🙏

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If the swelling if from the renal problems - (oedema) then this should disappear - as things get better.

Are you taking prednisolone as well ?

What have you're Doctors told you about the state of you're Lupus and kidneys ?

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30 mg a day ..stage 1 chronic kidney damage and class 4 lupus nephritis

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Yep, That sounds about what I was taking at my last flare (60mg in 1983)

Call me old fashioned, but prednisolone is really the core treatment - the rest are there to spare you from higher doses of the stuff.

Class 3 and 5 lupus nephritis here. (I don't know where I come in on the chronic kidney disease scale)

This being you're first - and in this day and age - I hope you're last renal flare - its probable that you'll have plenty of time and space for healing from how bad things are now.

Time and rest.

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I hope so too....hope you stay well 🙏

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Thank you all for replying, all of your personal experiences have reassured me and put my mind at ease, I'm starting treatment tomorrow will try cyclophosphamide first as I'm still in hospital, the doctor said I can change to mycophenalate at any time.

Thank you all so much I'm so happy I found this group

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I had the same last year , I was on mycophenolate ( no side effect ) but my lupus still flared up so I was send to hospital for 3 days on steroid, then I had 6 cycles of cyclophosphamide. God blesses I didn’t had much side effort... still managed to work most days.

I have then finished my chemo by in August ... have regain some of kidney function with gfr floating around the 70’s , and my most recent result is 80 ( my highest since my flare up last year :) )

Good luck and take care!!

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Thank you

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Though I'd give a quick update as I'm half way through my cyclophosphamide treatment.

After the first treatment I was violently sick and drained, if I wasn't sleeping I was vomiting profusely. The winter summer told me to ask for ondansetron which is amazing, I take before treatment and up to a week after and haven't been sick once, after treatment if I start to feel sick I have one and sickness disapears( thankyou winter :))

I took furosemide and after 3 days all my water retention disappeared, now I'm taking one every other day and my clothes fit me again thanks again winter :).

The doctors are confident that the cyclophosphamide will be successful in putting my kidneys into remission, they have noticed very slight improvements in my bloods...very slight but improvements none the less.

I would like to thank you all so much for your support and advice in my time of need it felt like I was falling down a dark hole and didn't know where the bottom was, you all helped pull me out of that hole and back into the light.. thank you all so much groups like this give people hope and vital information that doctors don't tell you.🙏

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