I have had lupus since 22. I never had any kidney issues until this year--at age 44--I am beyond angry about this--I have never heard of it attacking your kidneys so late in the game--I have type 5--pure membranous nephropathy and very high protein in urine. I will be going on cellcept(mycophenolate) next week. I am still in shock. I take just plaquenil currently. Has anyone had this? Does it ever go into remission? What can I expect?
thank you!
I have no advice but just wanted to say I’m so sorry to hear this. I hope you have a good support network around you and a good plan in place to help you get back to full health.
Hi NewEndland3, sorry to hear you are experiencing this. I have lupus nephritis, have had it as my primary symptom of lupus for 12 years now. With kidney involvement, I’ve found that immunosuppression and steroids as well as bp meds and hydroxychloroquine to control it has done well in keeping things relatively stable. There can be periods of ‘remission’ and protein can improve massively on the correct medication. Mine was about 100 times the normal level at diagnosis and now sits around 10 times normal, so it is possible to see improvement......everyone will have a different experience though.... the mycophenolate should help control the disease but watch your stomach, I was unable to tolerate it. Lots of people have great success from it though.
Wishing you the best of luck with it all and hoping for some improvement for you!
Did you try myfortic when your GI tract couldn’t tolerate myco?
Yep Myfortic was the brand I was on....no good for me at all unfortunately
Oh gosh: Thanks. Am v interested they started you on myfortic. At my lupus clinic patients are usually started on myco mofetil cellcept...myfortic is resorted to when a patient gets GI tract trouble from myco cellcept. Apparently myfortic’s chemical action differs from myco cellcept’s: have you heard this?
Years ago i was started on cellcept and tolerated it fine...and still do, in-fact somehow cellcept + higher dose pred have delayed the onset of my AID+PID-related intestinal failure. much to my surprise (cause of my a lifetime of chronic mouth to a*s GI tract illness). But i have 2 friends at my clinic who’ve had to switch to myfortic because of bad GI reactions to myco cellcept.
Hi NewEngland 22,
How has your lupus been managed throughout your 20’s, 30’s and early 40’s?
You say you are currently on Plaquinil. Has this been the case for these several years?
Yes-always on 400 of plaquenil-even in my 3 pregnancies..never felt it really helped though--a lot of sun sensitivity, swollen joints daily, angioedema but zero protein...and no this...
I have almost the opposit experience as you. I was diagnosed in my twenties when my gp noticed a butterfly rash and high protein in my urine. He ordered an ANA that was positive and put me n steroids. I took them for six months and my ANA went negative kidneys have functioned well ever since. I was eventually dismissed from rheumatology. That was 27 years ago. My Ana was slightly positive last October when I was test in the ICU after suffering a stroke but my kidneys are still functioning well. I am once again under the care of a rheumatologist but am feeling great with just meds to prevent recurrent stroke no lupus flares for now. So yes sometime remission happens and it can occasionally be long term.
Good luck with you treatment and try to keep stress to a minimum it really helps keep our inflammation, antibodies and flares at bay, I believe.
Hello I also have type 5 lupus nephritis. I got diagnosed maybe 2 years after my initial lupus diagnosis.
I have had times when no protein leak at all, but I have also had big protein leaks with very little symptoms. After a 24 hour urine test I was loosing 3 grams of protein.
I was put on mycofenalate maximum dose built up gradually. After a while I couldn’t stomach it anymore so was changed to myfortic which I have been fine with. I was put on candesartan and also tacrelimus (sorry wrong spelling).
I was still loosing protein so went for Rituximab infusions. I had 4 infusions over the corse of a year (2 at a time 6 months a part). The Rituximab worked brilliant for me and I am currently not loosing any protein.
I understand your feelings completely am really sorry your going through this now.
Sarah x
Thank you everyone for your replies. I have been on plaquenil 400mg daily since 20s--I had/have extreme sun sensitivity, swelling of joints, angioedema,hair loss, hypothyroid(since age 20)--but never any kidney issues. I had 3 pregnancies without issue--during my 3 rd pregnancy I had blood in my urine but dg with kidney stone. I admit that I missed seeing rheum the last 12 months but then again with 22 years of stable symptoms was it such a huge oversight? Now I believe this may have been brewing for 5 years ie since last pregnancy -and blood in urine may have been from nephritis and not kidney stone. The last year I did skip some doses of plaquenil because I have horrible gray blotches on body and now face--like I went from a peach complexion to a gray one. Apparently my skin color may change even more on this cellcept...I am sorry for my negativity but I am really having trouble letting go of this anger...Sarah-thank you--I am glad the rituximab worked--how l9ong have you been in remission? what are you on now?
Roarah,
Thank You! Yes--I feel my negativity, anxiety and bad attitude from these medical issues is raising my antibodies further--I don't know how to get out of the cycle...
I have benefited so much from CBT mindfulness and ACT therapy. My mood, anxiety, pain and illness are so much more manageable mentally now. My antibodies, I had severely high antiphospholip antibodies and Ana in December upon retest in March the Apls were negligible as was my ANA. Stress is literally a killer. I only wish I had not waited so long for neuropsychological treatment.
Hi New England
I have stage 4 Lupus Nephritis.
I was diagnosed last March after getting more and more ill over the course of the previous 5 years.
My Rheumatologist believes I had undiagnosed SLE for over 5 years.
My partner and I had started fertility treatment and my Rheumatologist thinks the hormones I was prescribed triggered the Nephritis.
I had a huge amount of protein in my urine and luckily for me exactly I finally got to see the specialist right as my Kidney function plummeted.
Within 2 days of seeing the Rheumatologist I was in hospital for a Kidney biopsy which was supposed to be an outpatient procedure but the discovery that my blood pressure was through the roof meant a week stay to control my blood pressure and allow the biopsy to be done.
I was immediately started on 2 lots of blood pressure meds, high dose prednisone, high dose MMF, alendonic acid, fluconazole, lansoprazole, hydrozychloroquine, fish oil and vitamin D.
I was then given various options regarding high impact treatment.
I think (apologies if I get this wrong as at the time I was hugely overwhelmed) the 'gold standard' treatment is Cyclophosphamide which is some type of Chemo treatment but there are quite a lot of side effects, one of which was potentially leaving you infertile and as the whole thing started because of fertility treatment I couldn't imagine taking this.
The alternative was Rituximab which is still only available on trial and there are a few questionnaires to complete every 6 to 12 months. Rituximab is a much kinder treatment with no hair loss and even the treatments are nowhere near as awful as I thought they were going to be.
So far I have received 2 courses, 2 IV's 2 weeks apart... 6 months between each course.
I am due another course next month and again in December but only 1 IV each time.
My Rheumatologist believes that in the future Rituximab will be the standard treatment and eventually will mean that the high dose Steriods will not be required.
I will not lie, I was really ill this time last year, I blew up with the steroids my immune system disappeared and caught a chest infection that needed 6 courses of antibiotics to clear and a month off work where the muscles in my legs wasted away till I could barely walk.
But.... I have little or no permanent damage to my kidneys at the moment which I'd hope would mean that I would be able to stop all the meds.
Unfortunately that is not the case and my specialist is insisting that I continue until he is happy that the Nephritis is completely in remission as he seems hopeful that once achieved there should less chance of a reoccurance of the condition.
In his words 'hit it hard, hit it once'.
I would suggest fighting to get on the Rituximab trial.
The most frustrating part is it seems to be a never ending battle with many low points, feeling like I've aged 10 years in 1 but I'm hopeful too.
I know I can beat this and so far apart from a month off last year I've managed to carry on working with little time off - less than most of my 'healthy' colleagues.
Wishing you all the best
Xxx
I saw rheum yesterday--wants me to start cellcept 1g twice/day and enalapril 5mg daily. She said rituximab trials were negative and if I fail cellcept will add tacrolimus--PS I am in the US. Saw nephro after that--he said also rituximab trials were negative but that it worked great in people who failed both cellcept and tacrolimus.....I feel like I am just embarking on a journey that i never wanted to take with these hard hitting meds....
Hello NewEngland.
I hope you're kidneys are recovering.
Yes......I too was rather *issed off when in 2015 I was diagnosed with class three and five Lupus Nephritis. I'd had a renal flare in 1985 that was successfully treated - but ended up with a dodgy Rheumatologist that undertreated me and caused my latest mess.
I have googled and re - googled how the class five stuff comes about and I still don't understand. ( and I'm not a total moron regarding this stuff ) The cause would have to be auto immune for me/us - but I get the impression they don't technically dont understand enough about how membranous stuff comes about....... I think - if it's just class 5 without any other damage - the long term prognosis is very good.
I had nasty protien leak - and while micophenolate stopped the Lupus from bothering my kidneys - it was candersartan ( BP med ) that reduced pressure on these fragile capillaries - along with a desperate last minute upping of the prednisolone dose that ultimately what stopped the protenuria and prevented my kidneys from getting worse.
I've just skipped from another post and saw you got reved up with mico. I do too but when I tell Doctors this they either say nothing or look at me like I'm insane. I was wondering if you'd had any feedback from Doctors about this side effect ?
ps. With mico, prednisolone - and candersartan - I have almost zero protenuria and my e - GFR is 80 to 90. This was after I was told I was going to loose them. So dont loose hope.
Hoping you take prednisolone now ?
How are things going ?
I am just on Cellcept 1gr BID. My rheum does not like using steroids-she believes long term they do more harm. I also should be on enalapril 5mg daily--I plan to start it this weekend--I am concerned as my BP is already low--usually 100/70 so hopefully I don't have to go to the ED with a hypotension crisis. I haven't told them I am revved up--because I know they will just roll their eyes---I know I have to tough it out--but my mood is crappy and the anxiety that I had since 3 months ago when I found out about kidney issues has gone up 10x since going on cellcept--it is from the med I know...I am going this week to get my prot/creat ratio and CBC and CMP14. Does the revved up/agitated feeling go away? What was your highest protein leak? Mine was 3.5 ratio so that translates to 3.5gr daily which is right at nephrotic levels.
Strange how lupus develops?
DLE (red rashes all over)>>SLE>>kidney crisis>>lupus nephritis (class5)all within the last three years.
Classic signs, frothy urine etc.
Had kidney biopsy, ANA clusters within glomeruli etc.
The medication is still working thankfully. Regular three monthly reviews with consultant NHS nephrologist 👏.
Lupus nephritis 
Class 4 Lupus Nephritis - Similar experiences anyone?
Mycophenolate Mofetil experience with lupus nephritis.
Panicking about blood in urine - lupus nephritis
lupus nephritis
