Just got diagnosed with Lupus nephritis

[Panda895]

Hi there.

Summary: Just recently got diagnosed with Lupus nephritis after a biopsy. My life has changed.

I'm constantly tired. And my body just feels different. I need to put much more effort into anything I do and even simple tasks are harder than usual. And my concentration is kind of. In addition, I don't have any appetite, but I do get hungry. I loved to eat rice. Now it's just tasteless. I'm kinda moody and sluggish. There is no motivation and if there is its short term. I have realized that I just want to eat warm things. I can't drink cold or room temperature water anymore so I have started drinking different kinds of teas (ginger tea seems to be nice), hot milk, and warm water.

And the most annoying part: I constantly burp. And my stomach feels full at times. (For perspective: I burp every 10 to 120 min; it changes). (Also: There is no pain and no acid coming up. )

I am currently taking (daily)

hydroxychloroquine sulfate 400 mg

prednisolone 40 mg

Myfortic mycophenolate sodium gastro-resistant 1440 mg

Calcium, Vitamin D, and Iron tablets (low dose)

Lasix 40mg

Could this be a side effect of any of those medicines? I have been taking them for a week now.

Burning questions: Will, I ever get back to my normal Is this a transition period? Will my body adapt to these medicines?

I am still overwhelmed by my diagnosis. It all feels so strange. (I could actually go on with my rant: I wake up almost three times in the night to go to the bathroom (I take the Lasix pills in the morning). Feet are swollen throughout the day. And my face is puffy .... etc)

Though the only good news that I have gotten in the last days is that my blood/urine values are improving after a week.

[Spanielmadlady]

Hello there. Which class of LN do you have ? Do you have a kidney specialist.? I was diagnosed with class v LN after a biopsy in 2018.i take hydroxychloroquine. Prednisolone, mmf 2gms amongst a load more.both hydroxchloroquine and mmf take at least 2 months to work 6 months for full effect.your Prednisolone dose is high and can cause bloating.you are on bone protection which is good.ive been on prednisolone for 6 yrs.

Life wont return to the old normal afraid.living with AI illness takes alot of compromise,acceptance and adjustment.chronic fatigue is a huge part so rest,sleep and nap.pace yourself and learn your boundries.you will over time learn those along with coping strategies.

Manage your salt intake,potassium and alcohol.cola makes me feel terrible.i drink alot of green tea.

There is a shed load of advice on here from very friendly and sociable people.google the spoon theory.something like 60% of lupies have kidney involvement without knowing so you are not alone.i know there is alot to take in and process weve been there .take your time and you will get there.

Feel free to send a message if I can help anymore .sending you a welcome hug or 2 🤗🤗 x

[Panda895 in reply to Spanielmadlady]

Hi there. First of all thank you for the reply. The class is 4. And yes, I have a good nephrologist and rheumatologist. Actually, I have been taking prednisolone 40 mg for about two weeks now. Dosage has been lowered to 35 (today). Hopefully this changes a few things. Thanks again for replying.

[Spanielmadlady in reply to Panda895]

Steroids have to be reduced very slowly.when my dose is 40mgs it takes me 3 months to get them down but I'm steroid dependent with being on them so long.you should be carrying a blue steroid warning card.i cant get my steroids down below 7. 5mgs without my lungs flaring (lupus has affected my lungs).I assume the thinking is by time you get the steroids down the mmf and hydroxychloroquine will be starting to kick in.so glad you have a good mdt.i have good one too inc kidney,chest,rheumatology and endocrinology specialist.these things are manageable if you are prepared to work with your body rather than fight against it.id rather do a little bit of something and enjoy it then do too much and have several bad days. X SML x

[Ar29980 in reply to Spanielmadlady]

Hi Panda895

Your message sounds like my symptoms exactly. I had my first flare up 2 years ago and it felt like I couldn't do anything anymore. I had no energy, my legs were so swollen that I couldn't walk and the joint pain was awful. My kidney function was blvery poor and my eGFR was only 15.

I was started on MMF which gave me a lot of acidity and I burped a lot. My consultant started Omeprazole and that helped to settle it.

Lupus makes you more likely to get blood clots - I had 3 at the same time! - so be on the lookout for that as it may just seem like really bad muscle pain.

I wont lie to you - it is a very slow recovery process and you have to learn to accept that you can't do all the things you used to. You have to pace yourself and learn to say no to people which is really hard. Know your limitations and accept help if people offer.

I went back to work after 3 months and took it slowly. I used to come home and sleep for 3 hours straight because I felt so knocked out but that slowly improved. My iron was low so I was on top up injections, I also had daily injections for the blood clots and was having Cyclophosphamide infusions every 2-4 weeks to try and get my kidneys to recover. It did help but it took a long time to get there.

A year and a half after diagnosis I finally felt like I had nearly my old level of energy back. MMF do much for me so I'm now on Azathiaprine to suppress my immune system an Hydroxychloroquine to control the join aches and pains. I have to be careful about picking up infections and was shielding from April to July. I'm also on Aspirin daily for DVT prevention after having a year of treatment for the clots.

Having lupus nephritis means embracing a new way of life. Knowing your limits and not overdoing things. But I've started cycling in lockdown and can do up to 5-6 miles at a time. I can do most of the things I used to do but I have high blood pressure too so need to look after my diet too.

It has taken 2 years to get here but there is light at the end of the tunnel. With Autoimmune conditions everything takes time to see an effect. You have to be patient and listen to your body. Life will get better and nearer to what was normal but this is now a lifelong condition and you have to accept that it brings with it certain limitations.

Try taking your steroids after food and get some GI cover to reduce the side effects and reduce acidity.

I hope this helps and I wish you all the best for your recovery.