Lupus nephritis

[Deegraham]

HI there

My son aged 18 was diagnosed 2 weeks ago with SLE and lupus nephritis and pneumonitis. He was classed at a 4 for his kidneys and has been started on IV rituximab, had 3 pulses of IV methylpred and is on oral pred, mycopehalate, Adcal and ranitidine. His BP is roughly 90/45 average at the moment. His haemoglobing has risen to the dizzy heights of 77 from 70 on discharge! He had no symptoms at all and trained 6 days a week with cycling team. His first symtpoms were joint swelling, vomitting and fatigue less than 4 weeks ago. And protein/blood in urine.

Thankfully renal biopsy shows no scarring and he is starting to perk up.

Can people with nephritis tell me a little bit about their own experiences post-diagnosis? What kind of flare ups do you get, how do you recognise them, are they as bad as the first time, how often do you get them etc etc. If you were an athlete of any sort, can you resume your activities between flare ups?

Fin is unusual in that a) he was 17 when first became unwell (admitted on his 18th birthday) and b)he is a boy

I would really appreciate your own personal experiences and I understand that this is a very individual disease but i am struggling to find anyone like Fin (age, gender and severity) so am seeking your experiences.

Many thanks

Dee

[Chin-up]

Hi Dee

I may not be the best person to respond as there are a lot more people out there with longer history living with lupus. However, I am a young person who used to be able to do a lot of sports (and still hope to be able to get back to this) so can sympathise with how your son might be feeling.

My symptoms prior to diagnosis were both legs, feet and ankles swelling. I didn’t feel particularly poorly (had recurrent tonsillitis leading up to this and an occasion of pneumonia but nothing else) but got checked out as it was stopping me from running. I have had reynauds in my hands for years but didn’t connect this to anything bigger at the time.

After several tests from different hospitals I was referred to a renal clinic as I had quite high volumes of protein in my urine. After a kidney biopsy it was confirmed I have lupus (SLE). This was all June last year. After a lot of medication things settled down and I went back to running etc. I just started building my fitness back to when I had a big flare up in June this year. I had severe joint pain in my wrists and was admitted to hospital for a few nights.

I have been told last week I’m still in a flare - disease activity is shown in my blood results. I knew I would be as I could have cried to the consultant at how rough I’m feeling. I get exhausted after a days work and go to bed early every night.

I’m told this could be both the lupus and the rituxamax (infused 22nd may and another 2 weeks after). Due another infusion in dec so they may decide not to go ahead with it given the extreme fatigue. I also have alopecia and have been back on water tablets for a few months now as my limbs are retaining water again.

It’s no fun at all but I’m told there will be periods when I’m out of a flare where I can live a normal life - once they get the right meds for me. As everyone is different I think it takes a while to get the right concoction of meds for you.

I hope this helps a little. Hopefully others will respond with some positivity so you can tell your son he can get back to his cycling one day

[Deegraham in reply to Chin-up]

Thankyou chin-up. I hope you get the right combo of drugs soon. Sounds like you have had a really hard time of it. I guess you men must feel a little alone with your lupus diagnosis knowing you are so in the minority

Let's hope you get back to your running soon! It's so important for your mental health too.

Take care