Was diagnosed with lupus last month. I’ve been suffering joint pain and inflammation since end of July this year. Had an urgent kidney biopsy last week and found out yesterday it’s lupus nephritis class 4.
Since starting 30mg prednisolone, Adcal D3 & hydroxychloroquine I’ve felt good as new. After yesterday’s renal results they’re now doubling my pred to 60mg and starting me on mycophenolate mofetil, amongst ramapril, ranatidine & nystatin.
Everything has happened really quickly and I’m still in shock about the whole thing. I’m 27, have a 1 year old daughter and am just worried about what my future holds.
Does anyone have experience of lupus nephritis class 4 and these drugs they’re putting me on?
Thank you in advance
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Wizz13
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90% to 95% of people with lupus will experience muscle and/or joint pain. We published an article on our blog about pain management which contains helpful tips and information: lupusuk.org.uk/pain-managem...
Sometimes, certain situations can be overwhelming which is why talking to someone can help relieve worries and anxiety that you may have. If you would like someone to speak to, we can provide you with LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, you can email me at chanpreet@lupusuk.org.uk
Welcome to this site ! I'm hoping some class 4 lupus nephritis people will make contact with you.
I have class 3 and 5 Lupus Nephritis. The class three is a similar kind of damage to class 4 only a bit less - the class five is another form of damage - hardened/fragile capillary walls. With proper current treatments you'll never have to worry about the class 5.
Looking at your medications - I'm pretty sure you're getting excellent medications to prevent this from ever happening.
I had a renal flare about 3 years ago which was pretty bleak. I was bewildered, horrified, and utterly frightened. I was worried about losing the Kidneys (mainly due to the class 5 damage) and concerned about the side effects of the medications.
Its utterly disconcerting when out of the blue you're suddenly told you're having a renal flare. Worse when you can't entirely predict the outcome. It comes with a lot of grinding uncertainty.
At the time I'd lost 50% of my kidneys and the class 5 stuff was a mess. Now I have close to 80% and the dysfunction associated with the class 5 damage is still reducing. My GP seems to think the Kidneys are and will be OK.
For me - prednisolone together with micophenolate - (and a blood pressure medication to keep the pressure of the capillaries) saved them. The ride was rough, but they're now stable - and still improving. I literally didn't expect this outcome.
Prednislolone has always been the core treatment for renal flares, but I really believe it was the micophenolate that was the most effective drug for me. Its good for everything.
Kidneys really do have an amazing capacity to heal.
There's also a lot of money being plunged all at once in kidney research right now due to the cost of dialysis on the public purse. Some amazing breakthroughs with stem cells and genetically engineered potential alternatives to human kidney donation. If things do go haywire for me, I'm reasonably confident that one of these research areas will help - pretty much everybody with renal problems have a normal life - perhaps within a couple of years ?
I'm a totally glass half empty person - but even I'm positive about some recent breakthroughs.
ps. I've chatted to others here with class 4 damage (unfortunately most of them aren't at the site anymore) but they're fit and functional. Some of them working full time etc.
Thank you so much for your reply. I didn’t realise you could have more than one class of nephritis. Sorry to hear what you’ve been through, it’s reassuring knowing that the kidneys are good at healing. Something else I only just found out today. It’s good to hear that the drugs have helped you and your kidneys are better.
Hopefully I’ll get into remission ASAP and can then try and continue to live my life as normal. At the moment everything just feels up in the air. It’s all been a lot of information at once but speaking to other people in similar situations definitely helps. Thank you again for taking the time to reply, I really appreciate it.
Hello. I'm 38yrs old with a 5yr old and like you got diagnosed with grade 4 lupus nephritis in July this year after my body filled up with fluid. I am on all the same medication as you and have made good progress. All my blood levels are improving every time I have them done which is 2 weekly. My consultant is pleased with this and I am slowly reducing my prednisoline. Currently on 20mg. I am lucky that I have tolerated the mycophenelate well and not had any bothersome side effects. I am 3.5 months into this treatment so all is good. I'm back to work in Nov and can't wait. You will get there yourself. Take care and listen to your body when it's saying rest. Thus is important. I know that's easier said than done with a little one but hopefully you will have a good family network who will help you. Xxx
Thank you so much for your reply, it’s encouraging knowing that you’re doing well on the same drugs. Have you had any kind of headache since starting them? That’s the only thing I’ve got at the mo but will mention it when I next see consultant x
Yes!! My son 18 diagnosed in Sept the week of his 18th birthday. And has lupus nephritis IV too. Don't panic 😀
I had some amazing advice here so I am now able to see that you can get through this hideous first acute episode.
Fin's renal team started him on prednisolone 50MG and once they saw it was class IV they started mycophenolate ranitidine and adcal. Plus on speaking to a lupus nephritis expert they did 3 days of IV methylpred 500MG per dose. Then started him on the biological drug intravenous rituximab. ( 2 doses through an IV infusion with two weeks between)
The guidelines that came out beginning of October say that someone with class IV should have something like rituximab and also the 3 doses of IV steroids (methylpred). THEN the idea is to get off the big doses of prednisolone asap. We are trying to get fin down to 5MG within a total of 8 weeks. Too much pred for a long time is not good for you.
You are also on an antimalarial which is protocol too. It helps with joints and skin.
It's not easy reading, the guideline, but it's really helpful to be able to say to your renal consultant " am I on the meds that the guidelines suggest??"
Fin is already showing improvement. We have weekly appts. His biopsy showed that there was no scarring which is great. I hope you had similar news. He is also coughing a lot cos they think it's affected lungs but hopefully that too will improve.
If you go to the thread entitled 18th birthday please read some amazing replies to my call for help. It applies to you too. You are so young also.
Over all, the diagnosis is crap but the best advice I got was "don't let the lupus define Fin. Let Fin define the lupus". Attitude is everything. Be choosy about what advice or threads you read. Some may drag you down with fear and anxiety.
Be positive. You may be different! It's such an individual disease.
All the best with your treatment. I will be thinking of you
Thank you for your reply. I will have a look at your thread and the comments, thank you. Sorry to hear about your son and especially on his 18th birthday week! Glad he is improving though, that’s really encouraging.
Yes I agree, positivity is key. Thank you again for taking the time to reply, I’ll no doubt speak to you again. All the best to Fin x
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