Diagnosed with Lupus Nephritis at 21

Hi Anne, can you please introduce yourself in a few words?

I’m Anne, turned 31 this summer, born in China, grew up in Britain and have lived with my husband in Toronto, Canada for the past two years! I visit home (Hertfordshire) a few times a year.

Tell us about your Lupus Nephritis / SLE diagnosis: in what circumstances and at what age were you diagnosed? What symptoms were you experiencing prior to diagnosis?

I was a week away from graduating from university in 2008, and two weeks away from turning 21 when I was diagnosed with Lupus Nephritis. Like many people with Lupus, I had symptoms that mimicked other illnesses such as fatigue, sore throat and cold / flu like symptoms. I was revising for my final exams in the park and after a few hours in the sun I felt so tired I had to leave. I then stayed in bed and slept for hours. I was so fatigued that it felt like I was wearing a huge weighted blanket that I could not take off. My eyes did not want to open. Eventually, I went to the GP and ran blood and urine tests as my blood pressure was incredibly high. 

Were you aware of this disease before the diagnosis? What was your reaction to the diagnosis?

I had no idea what Lupus was, nor did my family or friends.  I was in contact with my kidney specialist after I had numerous x-rays, scans, blood tests, urine tests and a biopsy, and when he called me I was at a fashion PR agency as an intern. I spent my lunch time researching Lupus. It didn’t really sink in until I went to see my nephrologist. I ended up crying for a moment, in the Doctor's room. My Dad was there with me (thankfully) and put his arm around me. After the appointment, I was waiting for my medication and my dad became emotional. That is, and always has been, the hardest part for me so far; seeing my Dad cry. I’m a strong person mentally and can handle anything Lupus throws at me but if I see any member of my family upset due to my illness that is the worst.

What was your initial treatment plan? What were the results? Did you have any side effects?

Oh boy! How long can my answer be? The initial plan was a super high dose of steroids; Mycophenolate (MMF) which is the medication you take after the transplant to prevent the body rejecting the new organ, Irbesartan for blood pressure and a few more medications on top of that such as Lansoprazole, to help ease the effects of all the drugs on my stomach. It instantly made a difference to my kidney function, blood pressure, protein leak from my kidneys however the side effects were horrendous. Mood swings, mild depression, anxiety, muscle pain, insomnia, weight gain, stomach pain, gastro-intestinal issues, thinning and weakening of the skin leading to stretch marks, persistent cough, bloating, water retention… Thankfully the side effects have calmed down but I’ll be on medication all my life.

I dread to think what long-term impact all these medications have on my body and mind but at least my Lupus is controlled and my kidneys are stable.

Are you currently on any medication? How often do you see your doctor and are you satisfied with the care you are receiving?

I am currently taking 6 types of medications in the morning and 4 in the evening to manage the fatigue, kidney function and hypertension. I also take Vitamin D, calcium and B12 supplements. Initially, I saw my nephrologist every month for about 6 months. As my condition became more stable I saw them every two, then three and then four months. I’m currently on every 6 months.

I was satisfied with the care I was receiving at first, however as time went on and I had more questions about this disease I felt I didn’t have enough time during my appointment. 10 -15 minutes every few months is really not acceptable, especially with a disease that has no cure, and it still relatively unknown and complex.

In what way has Lupus Nephritis / SLE influenced your lifestyle and your daily activities (your work, family life, etc.)? What was the most difficult thing to cope with?

At first due to the medication side effects and the fact that I was in a Lupus flare up it was very difficult to cope. I did work for about 6 months post-diagnosis but in the end, I took about a year off. After that year, when my condition became stable and I became accustomed to the medications, I started working again, going to the gym, going out with friends and doing things that any 21 year old woman would be doing. I’m headstrong and stubborn, so after a few months of feeling sorry for myself I made myself get back into the routine of life. With age, I have become more concerned about long-term health.

I have been mostly vegan for roughly over a year (I eat fish and eggs, with a piece of red meat a week to help with my anaemia). I follow a gluten-free, dairy-free, sugar-free, nightshade-free lifestyle when it comes to diet. I’ve actually just started a blog with recipes for people like me who have a restrictive diet due to necessity and not choice. I do yoga and pilates 4 times a week and work out with a personal trainer twice a week. I want to make sure that I’m as strong as I can be so that I can have a better chance of living a long and relatively pain free life as I can, without going into a flare up.

As I get older, I do notice my body deteriorating in some ways. For example, when I turned 30 I found that I couldn’t tolerate tomatoes anymore, I would get a few more aches in my finger and toe joints, developed gout (I was told this was a rare side effect of my medications and my reduced kidney function) and other small but not insignificant issues like that. I am very lucky to be able to be so mobile as I know many Lupus sufferers are not in any position to be active. I’m grateful every day to be able to live a relatively normal life, even though I only have about 40% kidney function left.

Another issue that has come up as I get older, and something myself and my husband have to think about, is the subject of children. I’ve been told by specialists that due to my condition and reduced kidney function it’ll be very difficult to conceive. Lupus is different in every person and manifests itself in totally different ways in everyone, so it’s nearly impossible to predict how mother and baby will do. I’ve had one specialist tell me my kidneys could be fine or they could fail and I’d be on dialysis or need a transplant. Others have told me the baby would not reach full-term, and some have been very adamant not to have children for the sake of my health.

Have you ever participated in clinical trials? If yes, can you please tell us about this experience? If not, would you like to do this in the future and why?

I haven’t taken part but I would be open to it if I had the opportunity. Anything that might help other Lupus sufferers is a good thing.

What would you recommend to other people affected by lupus?

Do your own research and don’t be afraid to seek additional help in the form of alternative therapies, such as acupuncture which can really help with join pain and inflammation. I recently went to see a naturopath who devised the eating plan I’m currently on. I was sceptical but I recently had my usual Lupus blood tests done after a month of being on the diet and my creatine levels have never been lower, my protein leak in my urine tests are at the lowest they’ve been for a long time… My nephrologist was not keen when I told him about this but it’s difficult to ignore such good blood tests results.

Also, there are some foods that people with autoimmune diseases should not eat and many Doctors don’t know or think it has any impact. Please do your own research on this and there are many papers and studies to back up certain foods such as nightshades, echinacea and alfalfa sprouts.

If you lose friends over your diagnosis know that you’re better off without negative people in your life.