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sooo...i have lupus...

(10 Posts)
SeldomSeenCake Mon 12-Sep-11 22:09:00

hi, im not sure what i am looking for with this except a bit of a vent and maybe others with experience of, or info about this...

i was told very matter of fact today by my GP that i have lupus. a mild case apparantly. I already knew i have lupus anticoagulant which is the cause of my many MCs but i was told this was related but not the real deal IYKWIM.
This info was on a letter from the rhumatologist and this info was not passed to me for 6 monthshmm and in that time i have been back and forth to my GP with ongoing kidney issues, pain and swelling in my joints and general poor healthhmm i am being sent for a barrage of blood tests to update the records and now have to attend the GP for a check up on a regular basis...rhumatology have discharged me until such time as my condition worsens enough to see the difference (not really sure what this means though). im not sure what to do with this info...does it mean changes?(my DR was very busy and didnt really have time to go through things with me...and google can be dangerouswink

any thoughts?...

vickylou2004 Tue 13-Sep-11 07:32:56

Hi, sorry to hear about your diagnosis. Havn't got any advice but just to say keep positive and I'm sure people will come along with advice soon. Was it diagnosed through special tests through the rhumatologist?

Anna1976 Tue 13-Sep-11 08:04:19

SeldomSeenCake - I'm sorry to hear that. http://www.lupusuk.org.uk/ will be helpful. If you have time, would it be worth making a half-hour non-urgent appointment to go through things with your GP, do you think? You could read some of the literature on the charity's website before the appointment so you have questions to ask. The regional group part of the website could potentially be good too. How much biology do you know? Do you have someone medical or scientific who could help you understand stuff, if you don't already know how things work? (not trying to sound patronising here - I just realise this kind of thing can seem overwhelming and impossibly complicated and unpredictable. It is unpredictable, but a bit less complicated if you understand some of the biology... which makes it less overwhelming.)

Hugs and good luck.

HerbWoman Tue 13-Sep-11 12:13:58

Might be worth looking into a paleo diet - there seems to be a lot of anecdotal evidence that people with autoimmune issues benefit hugely from cutting out all grains and possibly nightshade foods (potatoes, tomatoes, aubergine) as well as sugar. Also gluten particularly can be related to lupus and other autoimmune disease.

MardyArsedMidlander Tue 13-Sep-11 14:22:28

Hi! Sorry to hear about your diagnosis.

Four years ago I was diagnosed with systemic sclerosis- which is the 'sister' disease to lupus, and which had similar symptoms; tiredness, aching joints, general malaise and kidney problems. When I tell people what I have I always add 'DON'T GOOGLE' as it does throw up some horrendous results.

I had two years recently of very very bad health, but that has now all stabilised and I see the rheumatologist every six months now. I take 14 different tablets a day which is a pain- and find it's the fatigue that really impacts the most on daily living.
In a way I was glad to get the diagnosis as my f***ing useless former GP told me it was depression/ psychosomatic. However, after finding out I wasn't actually imagining it all, I did find it hard to come to terms with having a basically incurable disease. And one that I always have to explain to people!

LackaDAISYcal Wed 14-Sep-11 21:06:10

Sorry about your diagnosis and angry at the disintere4st of the GP and rheumatologist.

I've just (Monday) been diagnosed with mixed connective tissue disorder which is an overlap condition with symptoms of several auto-immune diseases including lupus, scleroderma and myositis, and possibly a few others; it's also certain that I have sjogrens syndrome as well.

from my limited understanding of it all, a broad brush "oh it's just a mild case" is a bit narrow minded as it is a ddisease that is ever changing, and just because you are in a period of low disease activity, doesn't mean it won't flare up next week or even tomorrow and that you should be being monitored regularly to make sure things are under control. If you're still symptomatic, then you perhpas need meds to control things. Are you taking anything? steroinds, anti-inflammatories etc?

A recent blood test I had flagged up a possible connective tissue disorder, and within a month I was at the local rheumatology clinic, where they gave me a very thorough check up with x-rays and took more blood to determine just which antibodies are involved. they also gave me a steroid injection which is already making a huge difference to the background joint and muscle pains I've had for several years. Have you had any further tests done other than blood tests? I've had a month to get my head round the possibility of lupus/MCTD etc and have read up loads and am still very confused by it all.

I second making a longer appointment with your GP to discuss things, but bear in mind that your GP may not be all that clued up about it. find out if there is a good rheumy clinic at any of the hospitals close to you and push for a referral. The lupus uk] may be able to help out and the message boards on www.thelupussite.com are very helpful and supportive. It's mostly N American, but there are Brits on there who may be able to help out.

I'm in a state of flux at the minute and reeling with all the information I've been given and feel that I have had a good experience with docs etc, so can only imagine how confused you must feel sad

SeldomSeenCake Tue 20-Sep-11 20:18:58

hi, thanks for the replies smile

i have sort of gotten my head around things but i am finding it a little daunting knowing that this is me...for the rest of my life. i kind of thought that it was my weight that was making my joints acheblush but with an under-active thyroid and gluten intolerance(not 100% if coeliac or nothmm) it makes it kind of difficult shedding weight iyswim.

it is interesting reading that cutting out gluten can improve my symptoms herbwoman as i do tend to swell alot if i eat wheat laden foods, pasta and the like. also i do get stomach issues with potatoes and tomatoes make me feel physically illgrin maybe my body has been trying to tell me something for a while...

SeldomSeenCake Tue 20-Sep-11 20:30:18

oops...
lackadaisycal i take asprin 75mcg daily due to the anticoag side of the disorder that was diagnosed at the recurrent MC clinic in 2009(i have had 7MCs now) and my GP told me i was to take this for life due to the instructions by the rhumatologist but didnt elaborate further (again in a rush) so i assumed it was for the diagnosis i had already had from the clinic.

piprabbit Tue 27-Sep-11 23:34:19

Sorry to come late to the thread, and sad about your diagnosis.

I agree that Lupus UK are great for up to date information.

Is the GP planning to treat your Lupus at all - there's a choice of medication which may be helpful to you.

Also - if you have kidney issues, I wonder if your GP could refer you to a renal consultant to make sure that that side of things is properly managed too.

BTW I was diagnosed with Lupus (SLE) 13 years ago. I was on medication for 2 years, but have been unmedicated since then (stopped when I started TTC and have so far not needed to go back on anything). I found all the information very frightening to begin with and it took a while to pick through what it all meant to me, as Lupus is so unique to each patient.

wobblypig Tue 27-Sep-11 23:45:03

I would think it unlikely that you would be discharged if there was any suggestion of lupus nephritis - do you know what kind of ' kidney issues'?

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