I have just been diagnosed with SLE Lupus.

[Elisha13]

I'm 19 and I'm finding it hard to cope with.. And I has blood test that is showing protein in my kidneys? Anyone know what will happen next?

[mstr]

Hi Elisha, welcome to the site where you will find really invaluable information so ask away as there is a lot of experience on here. First try not to panic as it will feel like the pitts at the moment but you have been diagnosed and so are on your first steps towards treatment. Here are a few things that may help you.

1. Look at the Lupus UK website an the information on Lupus and the booklets they have.

2. Pay to join this site and be a member of Lupus UK so that you get sent informative magazines a few times each year.

3. Through Lupus UK find out where your nearest support group is and if you can attend that. Being with others who understand is so helpful and you will feel less alone.

4. Hopefully your GP will have referred you to a rheumatologist/specialist so that you will get regular treatment, advice/medications.

5. Please look up medications for lupus prior to any appointments so you understand what could be discussed at a consultant appointment and it is less overwhelming.

6. Keep a diary of your symptoms as consultant appointments can be brief and you will want to get your views across of what symptoms you are having.

7. Keep pushing....if you do not feel you are getting anywhere always ask. I had to ask for a change of rheumatologist as my symptoms were not being treated properly.

8. Read from reputable sites like Lupus UK,(website, health unlocked and facebook).

9. With lupus it is all about pacing yourself so if you are doing something then take some time to rest afterwards. Even just sitting for half an hour will help. Do allow yourself more time to do things than before without feeling guilty as you are learning to deal with this condition.

If you can explain to family that you will be feeling fatigued (that it is part of the condition) and the other symptoms you may have such as joing/muscle pain, infections, kidney problems etc. This is so they understand what will be going on for you. They can also access information on line from Lupus UK too.

Mostly it takes time to understand this condition and it can seem daunting at first but hang on in there. You learn to know when you are having a flare up of symptoms, when you need different meds etc. I think the main thing too is to not try to 'fight it' and try to do too much. Your symptoms will worsen....Instead allow yourself time to get you know what is happening to you and understand the condition.

I hope this helps. It does all seem overwhelming at first, but it does get better the more you know. Hugs to you xx

[lupuswriter in reply to mstr]

Great advice. Everyone newly diagnosed with lupus should read this comment.

[Elisha13 in reply to lupuswriter]

Thankyou everyone.. Just finding different things from different people. As I have been diagnosed since September.. So still new to me!

[Danielle2419]

Hello OMG we are exactly the same you have come to the right place I'm 19 as well diagnosed at 17 had the works currently got slight protein leak from kidneys this may seem worrying but your rhuemy or doctor will help monitor this by regular urine samples mine goes up and down but yours is probley acute so try not to stress out it makes symptoms worse they will be ups and downs trust me I felt like you no where to turn as no ones knows what lupus is sometimes even family can seem unsupportive but only us lot on here no what its really like cause we are in the same boat you can contact me it might make you feel better knowing I'm your age

My name is Danielle

You can email me at [e-mail]

Or message me on the lupus website here up to you

But please don't stand alone on this I would love to help

Hugs

Danielle

X

[Kingdomgirl]

Yes I had this problem . It depends on the level of protein . They should monitor it for you . If it remains high they will probably do a kidney biopsy that is sedate you and take some tissue from your kidney . If it's high you may need dialysis but I'm told that this is rarely needed it could be just a kidney infection that they should give you antibiotics for . I hope that puts your mind at rest . You. Can e mail me personally if you want to . It's [e-mail]

[Paul_Howard Partner LUPUS UK]

Hi Elisha13,

It looks like everybody has already given you some great advice. I just want to add that we have a free information pack about lupus if you need it. Just send me a private message or email [e-mail] with your name and address and I can pop it in the post for you.

We also have a support group for young people with lupus (16-26) that meets in London roughly once every two months. If you'd like to meet some other people your age with lupus, you can find out more information about the meetings here - lupusuk.org.uk/young-people