Lupus - anyone

[Freybybaby]

My dotor suspects that I have Lupus and after years of aching joints/ muscles and fatigue has referred me to a rheumotologist for further tests. Does anyone else suffer with this disease, I don't know anyone with it and hadn't heard of it before?

My DM was diagnosed 5 years ago, after years of misdiagnoses.

She is currently attending a clinic in Manchester with one of the countries leading specialists leading it, and is taknig part in several Lupus studies.

LupusUk

is a useful site, DM gets lots of support on the forums.

My Niece has SLE, she is 19 and was diagnosed about 2 years ago.
She is pretty much in remission at the moment apart from when she doesn't take her medication

My Sister has Discoid Lupus, diagnosed about 6 months ago.

Strangely enough they are not related to each other, DN is the daughter of my half sister and my sister is a half sister on the other side IYSWIM.

As manky said Lupus UK will have lots of information.

I hope you get a diagnosis (if that?s what it is) soon as I know the fatigue can be really overwhelming.

Good luck.

Bump for you

Hello Freybybaby, I was diagnosed with Lupus (SLE to be specific) 12 years ago.

Please ask me anything you'd like to know and I'll try and answer (not an expert though).

I agree that Lupus UK are a fab source of information.

They have recently changed dm's medication again, she is now on an infusion of Rituximab, she has had the first two and should have another in a few months time.

They are hoping to wean her off the steroids, so far every time they try she has a massive flare!

It's Lupus SLE she has too.

I do find it frustrating as I have 3 young children and sometimes I think my DH thinks I'm just moaning about being tired and achey - or maybe I am being paranoid?

@piprabbit do you ever get breathless I find even going upstairs a drag sometimes.

I have noticed my skin is getting itchy although I don't have the typical 'butterfly' rash on my face yet.

@mankyscotslass I live in Manchester who does she see and which hosp?

App on 18th Feb so will hopefully have a clear answer then - meanwhile thanks to you all

Frebybaby, it's Manchester Royal Infirmary, Professor Bruce. Very practical, upfront Irishman, he is absolutely wonderful.

He is The Rhuemy consultant there, and my DH also sees him for PSA, though his main field of interest is Lupus.

Hi I was Dx ten years ago, and your symptoms sound just like me.

I use LupusUk as I find I get more info from there than I do from the Doctors.

I am in Dorset although see the Dr at Salisbury Hospital, at the moment I am waiting for a new appointment (was suppose to be October, they cancelled it as now only making appointment six weeks ahead, still waiting!)

Shoshe, DM is being seen every 6 weeks at the moment thanks to the new drug treatment, but she is usually on apps every 3 or 4 mths,
I'm assuming because they can't get her symptoms fully under control though, and she has been very ill.

From what Professor Bruce has said, a lot of doctors, even Rhuemys, don't have a decent understanding of Lupus.

I hope your symptoms are under control now?

Fairly much, I still get flares tho (having one at he moment)and then find it hard, my concentration goes and I get very tired due to the pain.

But to be honest I am bloody minded and wont let it get me down.

I take Hydroxchloroquine Sulphate 200mg every day twice a day, I was on once a day but it was put up about 2 years ago, and have Codeine Phospate 30mg and Etodolac 600mg at night plus paracetamol to boost it. Unfortunately the Etodolac makes me sick so I have to take anti sickeness drug as well.

I still mange to work full time as a CM tho.

Mum was on the Hydroxychloroquine too, and she has been on a few others.

Her maintenanance dose of steroids is still 15mg per day, they hope to reduce that if the Rituximab works well for her. She is on morphine patches to help control the pain too.

Because she was older before it was diagnosed and because hers is difficult to control, she has had lots of the other symptoms and illnesses. The consultant loves her because she is an "interesting" case, she is taking part in 2 studies at the research centre in Manchester at the moment!

Like you is the exhaustion which really hits her.

I was taken off the steroids a year ago, and I cant say it has made much difference.

I was Dx with Fibromalgia two years ago, sparked by the Lupus.

Freyby, not exactly breathless - but stairs were a big problem. I would get home from work exhausted and literally crawl on my hands and knees upstairs to bed, I couldn't walk upstairs.

I was on hydroxycholorquine for 2 years plus co-codamol for pain relief. Came off all the meds in 2000 when I wanted to start trying for a baby. I've been in remission ever since, and am very lucky to not need any meds at the moment.

I never had a rash at all, but did have other odd signs which seem to be Lupus related. I reacted really badly to insect bites which is anecdotally fairly common. I also think I have some of the concentration/memory problems.

I hope that your appointment goes well next week - a good consultant should really help you get to grips with what is going on (even if it takes little while to get meds etc. exactly right).