This is my first post here although I've been on this forum for a while. I'm 23 and got diagnosed with SLE and lupus nephritis a year ago in March. I've never had the nephritis treated until recently however. I take 400mg hydroxychloroquine (I should take 300mg based on weight though) and have always been on 10mg of prednisolone.
Having recently moved hospitals I wasn't seen for a while which unfortunately let the nephritis get worse (I have Class IV) so my new doctors put me on the Euro-lupus regimen with 3x intravenous drips of methylprednisolone and 6 courses of intravenous cyclophosphamide. I've had my first so far, which caused awful bloating and a bad stomach. I also keep feeling heart palpitations.
Just before this was decided I had a kidney biopsy and I've been increased to 30mg of prednisolone since the end of January which I'm really not happy about. My face, lower legs and ankles are always swollen and although this may also be due to the nephritis I feel it's also because of the steroids.
I guess I am posting to see if anyone else has suffered with the swelling, which I've seen for around 6 months now, or any effects of cyclophosphamide. They're hoping to move me onto mycophenolate or rituximab once I'm done with the chemotherapy.
My self esteem and body image are rock bottom at this point 😪. I have my first appointment with my nephrologist tomorrow so I hope they can taper the steroids and maybe give me some diuretics to help me out.
Hearing any other stories or experiences with these treatments would be great, as although I have family support, I still feel pretty lonely I'm this journey. 💜
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Try looking up Cushing syndrome. It's usually a byproduct of longer term corticosteroid use. Though I could not say for certain in your case, not being able to see.
Since 2014 I've had prednisone after every hospital visit, and like most here, I've had many.
Started with Itp which resulted in about 10 hospital visits a year for ivig, rituximab, methylprednisone. That combination works fairly well at autoimmune reversals of its for me.
My kidneys began to decline year after year. They have failed twice. Both times brought back to stage 4 with corticosteroids, erythropoeitin, and rituxin.
One heart attacks, two TIAS, and one DVT they treated with Coumadin + dexamethasone + angioplasty(clot)
Neuropathy and fatigue, no corticosteroids
Hypertension with losartan, carvedilol, hydralazine, and clonidine, though the dexamethasone raises BP.
From what I've seen, corticosteroids are great with inflammation, but only in the short term. Each time I've taken them, I've gained weight rapidly. It was never any place specific, just all over. And it caused bone pain(creaky sensation) with my walk turning to that of an old man, though I'm 27. I find dexamethasone takes longer for these effects to accumulate that prednisone.
Lately I've stopped taking them all together, as well as mycophenolate, too many side effects
I am terribly sorry to hear all that you've been through, and I do hope you feel better these days! Thank you for the recommendation of Cushing's, I've never been sure about it as I don't have extreme symptoms of it, but I think I will mention the possibility to my consultant today anyway and see what their opinion is.
Hi I have class v LN .im steroid dependent having needed steroids since 2014 so yes I carried steroid weight and have bloating.i can't help regards the cyclophosamide as I have had azathioprine and now mmf as well as hydroxy.my kidney function has been stable for sometime now.dont expect to come off steroids quickly ad they must be dropped very very slowly.if the swelling and bloating is due to steroids diuretics wont help as the steroids cause fat redistribution which is why it affects the stomach ,face and neck.You are not alone we've all been where you are xx
Thank you for this - I have a feeling the swelling may be due to both my kidney function and the steroids so my hopes is that diuretics as well as slowly tapering the prednisolone will help me over the upcoming months, as well as the treatments of course to improve kidney function. xx
I have lupus nephritis (class 5), SLE, DLE, hypothyroidism, type 1 diabetes and vasculitis and have good kidney function now but when first diagnosed around 7 years ago I had most of the symptoms you report.😩😭😢
Around that time I was offered Rituximab but declined (due to it being an experimental drug at the time+ iv administration for several hours every 2-3 weeks😩) so opted for MMF, was put on a complicated tapering dose of 45mg Prednisolone initially for 2 weeks, then 35mg for another 2 weeks and down to 5-7mg for several months. It was increased to 25mg last year due to flare up but now I’m on 5mg alternate days probably for life?🧐.
I was put Furosemide 40mg which made me pee a lot but it helped getting the leg swelling right down 👍.
I do not need the diuretic now! It’s prn!👍
I’ve now been on MMF since diagnosis but consultant nephrologist dropped it from 6x500mg/day down to 4x500mg/day=2 tablets in the morning and 2 at night. They work for me and GP seems happy with my kidney function. I’m also on Ramipril an ACE inhibitor which keeps BP to around 138/140 systolic to 70-65 diastolic.
Bp must be watched with kidney disease!👆
Note that lupus nephritis classification does not equate with stage of CKD ,👆Suprisingly Wiki gives a good description of LN classification with histological illustrations.👏…en.wikipedia.org/wiki/Lupus...
As you’re seeing your nephrologist she/he must write down the tapering dose for Prednisolone. This is MOST IMPORTANT with systemic steroids.
Difficult to say whether it’s water retention caused by L N OR Prednisolone induced/steroid “moon face” fat redistribution as @spanielmadlady says as it’s early days.🧐
You’re probably in the acute phase of controlling lupus nephritis which means damping down all that kidney inflammation which will take time.👍
Optimal dosages have to be bespoke!
I’m also on 200mg HCQ/day but was on 400mg due to possible maculopathy induced by HCQ🧐
Get well stay STRONG AND ALL THE BEST.
You probably need a consultant led full medication review for all your conditions plus interactions between the assorted drugs.
This was really useful to read, thank you! You're probably right, with the swelling being due to both LN and the steroids, but I'm hoping to get anything I can in the meantime to help with the swelling. I am grateful for my new rheumatologist for taking action so quickly for me although it was really overwhelming to hear I have to do chemotherapy. I will see what my nephrologist says today, I'm hoping it's some good news and a plan with the medications I'm taking. I am also taking 5mg ramipril so hoping my body is behaving and that doesn't have to get higher. My rheumatologist told me nephrology tend to give higher doses of meds which worries me slightly!
Thanks for your highly informative and personal post.👏
One thing that you’ve mentioned which is important is that the “class” of lupus nephritis in no way relates to the various stages of CKD (chronic kidney disease).
LN (class 5) relates to the inflammatory processes within the filtration units within the kidneys, the glomeruli and not CKD.
Thanks for that wiki post which explains it clearly. So one could be diagnosed with LN class 5 and still have good kidney function!
Hi, I’ve just read your post and would like to say how sorry I am that you have had to go through what you have at your young age. I was diagnosed with lupus sle nephritis stage III last year - like yourself having left lupus untreated it had started to attack my kidneys. I had a biopsy too and then was put on prednisone, hydroxycloroquine and mmf.
I know this isn’t really a reply to your question - I just wanted to reach out to you and let you know you’re not alone - being on this site has been so helpful to me in not only answering certain questions but also the people are very kind and caring and always reassure me.
Please try not to get down about things - you can chat with me anytime you’d like to about anything. x
Thank you so much for this, it does make me feel better to know I'm not alone and this forum has been wonderful to read real life situations. I hope to start mmf and eventually go into remission, given I can cope with any side effects that come along with it. I know that may take months and my rheumatologist seems to have a plan for at least a couple of years for me which is also reassuring I guess! xx
Hi Pseudome4765, welcome. Sorry to hear about all your health issues. Here's hoping one day that you will find a release from all these drugs and return to being happy with your body and soul, get your life back.I have a condition called Dermatomyositis, existing with it for over 7 years now. I have been on various immunosuppressive drugs combined with infusions.
My kidneys suffered with Prograf, but have now been switched onto Mycophenolate Mofetil. I started off on 60mg of Prednisolone, been winding down Steroids for years, presently on 17.5mg. One day I hope to be "Steroid Free" as I believe that they are now causing more damage than good! I wish you all the luck in the world to reach the treatment to allow you to enjoy your life again. Stay Safe x
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