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Lupus. Does anyone have experience of this?

(10 Posts)
ClaudiaSchiffer Mon 17-Aug-09 00:09:03

My lovely sil has suspected Lupus. She has had an awful last 10 wks with extreme pain and no proper diagnosis (although hopefully this will soon change). The docs latest thoughts are that it is Lupus.

Does anyone else have this? Did it take a while to get diagnosed? What is your treatment? How long before treatments worked?

Sil has been pretty ill and has to look after 2yr old ds while dh at work. Unfortunately she has little or no support near where she lives. And I am worried about her.

Any advice would be helpful. Thanks.

ClaudiaSchiffer Mon 17-Aug-09 08:55:53

Posting this at a more reasonable time . . .

mankyscotslass Mon 17-Aug-09 09:21:34

My mum has this, she was diagnosed finally 3 years ago. Looking back she has been misdiagnosed for years.

She is now on Cellcept, Hydrocolorquinine, steroids,and permanent Fentanyl patches (morphine for pain relief). Steroids are only meant to be a temporary measure but at the moment they can't get her off them without her having a pain crisis, so they are at a maintenance dose just now.

She also suffers from extreme exhaustion on occasions, and would be incapable of doing anything but sleep. She has been left with heart and lung damage as a result of it too.

Mum knows of other people though for whom the condition has been more easily managed, so she is just unlucky. She is getting a bit better though, and went 9 mths without a crisis which is the longest she has gone since diagnoses.

It's a horrible condition, with loads of symptoms, tthe Lupus UK site is great for info and support, mum uses it a lot.

You may find that your brother may have to take carers leave on occasion to look after her or the children.

Is your SIL under the care of a rhuematologist? at a specialist centre? Does she have a Lupus nurse? Mum's has been a godsend in terms of info and support and help. It's not very well understood really in the wider medical proffession, so your SIL will pribably have to educate herself then her GP.

I just realised what a glum picture I have painted, but it's not all bad, just our experience. There are people oiut there who find that with adjustments life goes on pretty much as normal. I hope your sil is one of them!

magso Mon 17-Aug-09 13:53:19

From all I have read ( as a suspected sufferer) it seems SLE is very hard to diagnose as it is different in every person and affects lots of things that could be other medical problems. An earlier thread (cant find it!) said that often people are very ill by the time their Lupus is correctly diagnosed.

mankyscotslass Mon 17-Aug-09 13:58:46

Magso, that is correct. Mum was only diagnosed when she was hospitalized with severe pain, and even then she was in for 6 weeks before they decided that, then another few weeks after.

ClaudiaSchiffer Tue 18-Aug-09 00:11:23

Thanks so much magso and mankyscotslass. My sil has been very pooly so hopefully she will get a diagnosis soon (although already been a number of weeks).

Magso - how long have you been ill - and have you had a diagnosis?

piprabbit Tue 18-Aug-09 00:37:04

I'm so sorry to hear about your SIL - I hope that she gets a dianosis soon as undiagnosed pain is terribly hard to deal with.

I was diagnosed with SLE 11 years ago. I had been experiencing very achy joints and extreme tiredness and lots of migraines. I was just seeing doctors to try and find out what was going on, when I fell critically ill (not actually SLE related but my buggered immune system probably didn't help). While in hospital I had loads and loads of tests, repeated very frequently, and eventually was dianosed with SLE. I suppose I was lucky because the whole dianosis process was fast-forwarded and I didn't have to hang around for months going to lots of out-patient appts.

I was treated with hydrochloriquine for 2years, with pain killers for the joint pain. In 2000 I stopped taking all my meds (under my consultant's watchful eye) while I tried to get pregnant. I have been in full-time employment throughout (just given up to be a SAHM) and I'm still free of meds and have been hugely lucky to not flare since 1989. I am also incredibly fortunate to have 2 DCs - although my pregnancies were closely monitored and I took some anti-clotting drugs.

Lupus UK are a brilliant source of information, as are ARC (the Arthritis and Rheumatism people). Don't let your SIL visit the library as some of the older Lupus books are v. depressing/misleading about life expectancy etc. as treatment is continually evolving and improving.

Just wanted to let you know that Lupus does have a slightly less bleak face, and is nigh on impossible to predict the course of the disease in any indivudal.

Wishing your SIL all the best.

ClaudiaSchiffer Tue 18-Aug-09 03:48:44

Again thank you so much, piprabbit congratulations on your 2dcs and continuing good health.

I'll look at the Lupus UK site and forward this thread to dsil. I think her husband googled Lupus and then got horrified by the depressing websites out there. So a good tip about out of date library books.

One of the unfortunate things - for me - is that we live in different countries so I feel at a bit of a loss as to best offer support. They don't really have anyone nearby who can help much and dbil is really taking on a lot of the care which he (although kind) is finding pretty stressful and hard to manage.

magso Tue 18-Aug-09 11:53:19

Claudia no I have not had a dx of SLE. I have been gradually getting less well for some years but recently had a long stay in hospital with a lung problem usually associated with autoimmune disorders such as sle. Whilst there they found certain antibodies with heart and kidney concerns. I have had all sorts of odd symptons in the past years ( including mcs)and now with the benefit of hindsight can see they may have been connected. I think the Gps think I am neurotic or something. Exhaustion along with back and rib pain are the biggest problem for me - I put it down to motherhood ( ds has sn). It was only when my mother (3 decades older) said she did not have joint pain that I thought well perhaps it is not the onset of middle age! Of course I may not have SLE ( there are other autoimmune disorders) I am awaiting referrals at present.
Hope you DSIL gets her sle under control soon.

Annie12 Tue 25-Aug-09 22:21:06

Hi

My daughter has RA which is an autoimmune disease like Lupus. After 3 weeks on Methotrexate and feeling worse, she visited a naturopath and has not looked back since.

Look at this website, http://www.health-n-energy.com/ARTICLES/leakygut.htm and Google Leaky Gut and Lupus. It is very interesting. Dr Gail Darlington is a Rheumamtologist who treats RA patients by diet first of all and I think Lupus is similar isn't it? You can get her book. Also, there is a book called Conquering Arthritis by Barbara D Allan which you can see on Amazon.com (make sure you read the reviews) and look at her website.

My daughter now seems to have bowel problems which again is connected to RA. One thing seems to lead to another. Homeopathy is the key as far as we are concerned as the NHS only want to treat the symptoms and not find out whas caused the symptoms. My daughter started with joint pain after having a baby. Joint pain is also connected with Inflammatory Bowel Disease. Good Luck

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