Newly diagnosed

[Lupuslost]

Hello. In the process of being diagnosed with likely lupus nephritis,having a tough time time getting my head around it

[Spanielmadlady]

Hi sorry to hear of your potential diagnosis.i have class v lupus nephritis diagnosed in 2018 by biopsy.try not to panic or overthink things it is manageable with meds,compromise and adjustments.they are a friendly bunch on here willing to listen and support you with a wealth of knowledge and advice.keep a tight rein on those stress levels x

[Lupuslost in reply to Spanielmadlady]

Hiya.Thank you for your reply, sorry to hear about your diagnosis too. It is reassuring to hear from someone further down the line. First treatment today so at least I am on the way x

[Spanielmadlady in reply to Lupuslost]

Good luck with your treatment i hope its successful with not to many side effects 🤞.rest up and relax xx

[Krazykat26]

Hi Lupuslost 🤗 I'm sorry to hear about your potential diagnosis too..but there is hope coz you've found us lot!!

I'm not able to help with lupus nephritis as my diagnosis is different to yours but u will find that we all have some kind of autoimmune disease including lupus.

This is a friendly supportive forum n u will be able to learn all about your condition in time..post any questions on here n u can guarantee that someone will connect with the problem n say yes I get that..my doc prescribed me this med..or my doc said it was this etc!!

It's a very lonely time..I remember in 2017 when I was told I had subacute cutaneous lupus erythematous (SCLE) I didn't have a clue..I'd never even heard of lupus!! It's a lot to get one's head around..it even took me ages to be able to spell it!! But I found this forum n what a godsend it has been..to find like-minded people who r all going through the same or similar kind of stuff n living with lupus 24/7 you r definitely not alone..there r loads of us!!

Lupus UK has lots of info leaflets so u can have a read on there when you're ready but I understand that it's a lot to take in n I will just say that u have to give yourself time to adjust to the news..be gentle with yourself n try not to stress too much coz u will only make yourself feel worse.

You may feel lost right now but you've joined a band of lupus warriors n we'll help u along the way with practical tips, medication info, blood tests, etc. We also have a good giggle at times..we share all sorts here 😉 Welcome to the tribe 🤗🌈😽😽xx

[Lupuslost in reply to Krazykat26]

Hi, thank you for your long post, it is so helpful and reassuring. I am so appreciative of the messages. Yes still getting my head round it but had first treatment today and fully focused on attacking this with my SKS (sh*t kicking soldiers)that the chemo sent to battle. Like the idea if a little war in there, that we will win! X

[WinterSwimmer]

Gosh yes - you poor thing. I have class iv nephritis which was diagnosed by biopsy in early 2012. I mostly don't think much about it any more but your post has reminded me of what a big deal it was at the time. That's all I can say really - if it does turn out to be nephritis, you'll get used to it. And as Spanielmadlady has said, above, it is manageable. Take a deep breath, and take your time - it'll be OK.

[Lupuslost in reply to WinterSwimmer]

Thanks winter swimmer. Sorry to hear about your diagnosis too. Yes it is all overwhelming at the moment but I am on my way now, have no choice so need to crack on rather than crack up! Thanks for messaging x

[Meg52]

Sorry to hear you may have lupus nephritis. I have lupus with lung involvement so can't really offer advice, except to post any worries and questions you have on here, there are always people ready to offer support. Autoimmune conditions cause all sorts of problems so don't be afraid to ask for help. We are all here to help each other. x

[Lupuslost in reply to Meg52]

Hi Meg, thanks for your reply. Glad to be on board! X

[Lupuslost]

Hi all. Thank you so much for your supportive comments, it is lovely. I have been confirmed as stage III lupus nephritis, starting cyclophosphamide treatment today. Been a whirlwind of a week or two. X

[Krazykat26 in reply to Lupuslost]

Ok well at least now u know what you're dealing with. Mixed emotions probably..it was for me..at last knowing that there was a reason for feeling so 💩 n then realising that it's chronic illness!! I can't offer any advice but I can send u big cyber 🤗🤗🤗

You're amongst friends who will always answer any questions u have regarding treatment..side effects etc..you're not alone 🤗🌈😽😽xx

[Lupuslost in reply to Krazykat26]

Thanks so much, I feel your 🤗 it's lovely! Xx

[Susieliz39]

Hi Lupuslost. I just want to say I’m with you and know how you are feeling at the minute, as will everyone on here too, I’m sure.Although I have a different diagnosis to you, I had my first infusion of cyclophosamide yesterday for lung disease. My next one is in a month’s time. All ok so far for me, lazy day here and no side effects (don’t speak too soon), really hope you are the same.

It’s a whirlwind of emotions, isn’t it? One minute being at work and functioning, the next being told that you need chemo treatment. It takes a while to get your head around it and some resilience too, which we have, it just takes time to find it sometimes!

I’ve received some really good support and advice on this forum from lots of lovely people all rooting for each other!

Give yourself time to adapt to your diagnosis, I’m trying to take each day at a time and go ‘with the flow’ 🙄

Take care of yourself, it would be lovely to hear how you are going on. Hope you have a relaxing and peaceful Christmas.

Sue x

[Lupuslost in reply to Susieliz39]

Hi SueI absolutely agree, I have always been fit and healthy so from feeling unwell suddenly mid November to two hospital stays this month and starting chemo today and being told will likely be 12-18 months before I am even looking at remission, is a mind bender. In all honesty I am not even sure that is has fully sunk in.

I hope you continue to be symptom free over the next few days. Speak soon. X

[Susieliz39 in reply to Lupuslost]

I’m not surprised you haven’t been able to take on board what the last month or so has thrown at you. It takes time to adjust and you’ve had a double whammy, as well as dealing with the treatment. Acceptance takes time but gradually you do adjust. It’s been 10 years since I was diagnosed with Lupus and there are still times that a curve ball is thrown.... like now. All I can offer is the hope that you know there are others out there going through the same thing and brings you some comfort. Reach out to the lovely folk on here, they are an encyclopaedia of knowledge! Undoubtedly someone will have been through or going through the same thing. Be kind to yourself and I’ll take some of my own advice too!

Sue x

[Lupuslost in reply to Susieliz39]

Hi Sue

Yes I think good advice,we both need to be kind to ourselves this next few days. At least the world outside isn't exactly carrying on as normal!

Look after yourself

Jess x

[Lupuslost]

Is there anything particular I need to do, or, join a particular group or follow people to get updates and chats etc? X

[Susieliz39 in reply to Lupuslost]

There’s the option to save posts, follow people and private message. If you look in settings there’s also the option to receive email alerts x