Lupus nephritis - fluid retention?

[Laurajoy]

Hello

I'm on 3000mg Mycophenolate daily (along with other medication for SLE) and have an appointment with Nephrology towards the end of April. I appear to have quite a bit of fluid retention which seems to be changing my lower body shape especially around my hips, buttocks and thighs, something I have never had before. Is this related to the kidneys? There is so much information out there that I find it quite overwhelming, so I thought this lovely community might have some pointers for me.

Thank you

[Hidden]

High dose? 3000mg? That’s usually for severe flare ups?

When I was first diagnosed with lupus nephritis I had the same ie 6 tablets of 500mg each plus 40 mg Furosemide for water retention (oedema) in my lower limbs. Fluid retention + frothy albumen ridden urine points to malfunctioning, inflamed kidneys ie the glomeruli>>>glomerulonephritis which is the renal part that is not working properly 🤔.

Was also prescribed a high dose of Prednisolone to calm things down but now down to 5mg/day with occasional daily omission.

Now the Furosemide has been prn and the MMF is down to 2000mg with no water retention. But that’s me.

Don’t forget to drink water to flush out kidneys.

Have your medics forgotten the water pills, the steroids?

Trust my experience of this illness helps?

Take care.

[Laurajoy in reply to Hidden]

Thank you, appreciated, that helps a lot.

I've been on 3000mg since mid November and have reduced Prednisolone to 5mg a day. The fluid retention has been for the last 4 weeks. I didn't get a prescription for Furosemide, will request that tomorrow.

I'll up my water intake, I'm a bit lazy with that!

Take care, have a good evening.

😊

[Hidden in reply to Laurajoy]

Note that if you are prescribed Furosemide, take it in the morning OR you’ll be peeing all night!

Very sleep disruptive. Prop your legs up eg when watching the tv.It stops blood pooling in the legs, thighs and helps with the venous back flow to the heart.

Hope all’s ok.

[sookey]

I have been dancing with Lupus for around 15 years now and am familiar with your current Ned situation. I hadn’t experienced the fluid retention you describe until last year.

I was prescribed furosemide but it didn’t really help and then I noticed my arms and shoulders were retaining water too.

I read up on the lymphatic system and started dry brushing and (don’t laugh) I started bouncing. Yes... bouncing. On a mini trampoline. I saw almost instant results.

[EOLHPC in reply to sookey]

Hope Laurajoy won’t mind, but here’s a question re dry brushing:My persistent oedema is in a feet, ankles, lower legs ...to some degree, it’s lymphatic, but it’s also due to several other factors probably including a degree of nephritis. Am v interested in trying dry brushing, but everything I found says not to do it on irritated, broken etc skin....and my feet, ankles, lower legs have a lot of that. Have you used dry brushing on irritated, broken skin?

[EOLHPC in reply to EOLHPC]

😅

My Oedema was 6/10 in this recent pic, but during it fluctuates to 9/10 daily

[sookey in reply to EOLHPC]

Ouch I am so sorry! That does look very painful.

I do not have broken skin and my dry brush is made from cactus which is quite firm so probably not for broken skin. Dry brushing is meant to be down gently however.

There are also self massage techniques that can be used to stimulate lymph drainage.

My understanding is that because the lymphatic system is not powered by pump like the vascular system (the heart), things like targeted massage and (believe it or not), gentle but regular jumping up and down does help. Even more so than just walking.

Oh I hope perhaps one or some of these suggestions help you. I know how upsetting it is when your body changes in this way.

Best wishes S

[EOLHPC in reply to sookey]

🥰 THAANKS VVVVVV MUCH: you’ve helped me A LOT...am getting my head around this lymph system thing before rheumy tele review this coming Monday...WISH I could can’t jump up & down but my flippers & spine & inner ear really won’t let me...but I do try my best at walking every day & at least this helps my mental health 🤷🏼‍♀️‼️

[sookey in reply to EOLHPC]

I read that if you can support yourself (perhaps by leaning on the breakfast bar), then raise yourself briefly by lifting your heals if the ground a number of time is also a good ‘bounce’ for lymph.

I hope you can find some respite if I think of anything else I will let you know

Xx

[EOLHPC in reply to sookey]

😯 WILL DEFINITELY GIVE THIS A GO 👏👏👏👏...ANY TIPS will always be V WELCOME

❤️🍀❤️🍀 Coco

[sookey in reply to EOLHPC]

Sorry not sure if I sent this already?... I also use a yoga ball to sit on at my desk

[EOLHPC in reply to sookey]

👍 they are great...but 🤷🏼‍♀️ am past the days when I could use them

[Hidden in reply to EOLHPC]

Just looking at your photos.

It seems to me that 100% tea tree oil could be applied beneficially to feet: skin, toenails and heels and between the toes.☝️😁...but NOT to broken skin!

Wonderful stuff:anti inflammatory, antibacterial, antiviral and antifungal plus moisturizing, soothing and sweet smelling.

What’s not to like. For toenails first rub/file down with emery boards. One drop on top of each nail. Allow to soak in 2/3 minutes👏.

I do my own feet 2/3 times/week. Wonderful stuff is tea tree oil. They look beautiful with this treatment.

[EOLHPC in reply to Hidden]

Yes, I know tea tree oil is MUCH LOVED by many 👏👏👏👏, but over the decades 🤷🏼‍♀️ I’ve always hyperreacted to tea tree oil in awful ways...am hEDS and extremely hypersensitive ...am 67 now, and the hypersensitivity is worse than ever: probably Mast Cell Activation Disorder from my maternal side...my feet have had to have specialist attention all my life...am very lucky to have good specialist clinicians looking after them, but infant onset illnesses & time have taken their toll...

[Hidden in reply to EOLHPC]

Sorry to hear about the MCAD and hypersensitivity to tea tree oil!😥😢Hope you continue to get good specialist treatment.xx

[EOLHPC in reply to Hidden]

Thanks 🤗...I never dare take the help I get for granted...but so far so good...thing is, I’ve also always been into self help techniques, which my medics like a lot: seems to help them relate to me as if I’m one of the team 😉 🍀❤️

[sookey]

Sorry Laura... my son interrupted me.. I also wanted to say, when I say the results were instantaneous, I mean not all the fluid disappears overnight.

I can’t go bouncing crazy as too much flairs the beast so just a gentle bounce.

Anyhoo... that’s my tuppence worth hope it helps

[LisaSnow]

Reduce salt in your diet will help dramatically.