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Lupus Anticoagulant and actual Lupus?

(11 Posts)
BloodWorries Tue 11-Apr-17 09:57:52

I'm in a lot of pain at the moment, and tried googling but just confusing myself more and more.

I'm struggling and want to try keep this short, but basically I had a test for Lupus Anticoagulants as part of a pre-op routine test set. They retested at the hospital then referred me back to my GP. Who retested twice.
First time I've actually seen any doctor (just been nurses taking blood and receptionists calling to ask me to repeat), he said I should of have had lots more blood tests to check for lupus. Which he has now ordered, but won't be tested until end of the month (due to lack of appointments) and then wait for results.

I thought they were too separate things? And didn't relate at all, and it was just a poor naming coincidence? GP acted like they are one and the same, but the anticoagulant wasn't the only test they should have done. Am I missing something?

I'm fed up of being in pain. Can barely lift my arms today. I use a wheelchair, crutches or a stick depending on my level of pain in my back and legs, but today I couldn't cope with the weight of my coat on my shoulders. I thought I was getting better (op seems to of helped a lot but not a complete fix). Typing is also painful so I'm going to have to leave it there.

If it is lupus are there treatments that will allow my life to be more normal? I want an active life, I want to study, work, see family and friends etc. I'm fed up of being stuck in bed in pain. I thought I was getting better, and the joint and muscle pain was just from me doing more (after being stuck in bed for 9 months).

blahblahblah2000 Tue 11-Apr-17 10:07:40

Hello I didn't want to not reply. I'm not sure about coagulants but there is no definitive test for lupus they look at symptoms and your ANA results and patterns. The higher the ANA then the more likely to be lupus (can anyone explain this properly please sorry I'm no good?) I have lupus which means I get very bad joint and muscle pain, numb fingers and toes and shooting "electric" type pain in my hands. However once I started plaquenil within 3-4 months I was feeling better and now I'm pretty much "normal". It took ages for a diagnosis and it's super frustrating. Hang in there.

BloodWorries Tue 11-Apr-17 10:49:13

Thank you for your reply. I really appreciate it.

I have nerve impingement in a few places as it is (3 operations to rectify all in different places, none 100% successful - but I don't think they ever truly are) so often have shooting pains, tingling, numbness etc in those areas (legs, wrists, hands). At the moment I ache all over, but been putting that down to doing too much. And it does come and go (anything from a few days to a few weeks).

Does lupus always present with a rash? Google said a butterfly rash over nose and cheeks, never had anything like that.

Thanks again for your advice and support. I'm glad to hear you are managing your condition.

Also read back my first post, and wanted to apologise for putting normal, I meant normal for me. I was never overly active, but loved walking, dog training, doing my job, swimming, playing with kids in the family. Now I can't walk to the end of the road, and my shoulders are so sore I can't lift a drink to my mouth without pain.

PerspicaciaTick Tue 11-Apr-17 13:51:40

Lupus can affect pretty much any and every organ in the body and it is very hard to diagnose as there isn't a single conclusive test. The doctors are basically looking for you to tick off a selection of Lupus-related symptoms and to have a variety of test results which, in the absence of any other diagnosis, will lead to them diagnosing Lupus.

A positive ANA test result can be indicative of Lupus, but it wouldn't be enough to get a diagnosis on its own. The doctors would need other symptoms, clues and tests to corroborate the ANA test.

Lot of people with Lupus, including me, don't have the butterfly rash.

I was diagnosed with the SLE form of Lupus nearly 20 years ago. I was exhausted and ached all over, especially my arms and legs. I used to have sleep with my hands in a certain position or else they hurt terribly when I woke up. But it took a major illness (exacerbated although not caused by my Lupus) with barrages of repeated tests before I got my diagnois. I took plaquenil for two years (I stopped so I could try for a baby) and was discharged from my rheumy's outpatient clinic after 5 years. I've never gone back on any Lupus medication (although my pregnancies needed careful monitoring and blood thinner injections) and have been more or less symptom free for the last decade.

I'm sorry to hear you are in so much pain, I hope that you get some effective treatment sorted soon (whatever your disgnosis) flowers.
It might be worth checking out the Spoons support threads here on MN - I think this is the current one.

There is lots of random stuff out there in googleland about Lupus - I find Lupus UK a very good place to look for calm, factual information.

BloodWorries Tue 11-Apr-17 16:51:48

Thank you very much for you advice and support. I will have a look at those sites. I'm trying not to read too much into it and frighten myself, but it's also good to be aware of what they are testing me for and to see if I actually have any of the symptoms.

At the moment just seems to be pain and exhaustion which could be a number of things, mostly very minor. So I'm trying to stay hopeful that it's all just part of the recover from my last operation (although that's about 6 months ago now...) but this weeks aches and pains means putting on a top or brushing my hair/teeth are painful never mind doing anything productive.

oldstudentmum Tue 11-Apr-17 17:22:29

Hi babe, sorry to hear your are feeling crap (been there got the tshirt) I have SLE and having a flare up of nephrotic syndrome at the moment. unlike the others I take steroids and azaphrine plus some other crap! however I take anti-drepressants I have read that sometimes they give people with chronic pain antidepressants, it might be worth asking GP? take care and like the others everyone may present differently with lupus you don't always get the rash!

hairymuffet Fri 14-Apr-17 17:55:13

Lupus anticoagulant is a blood clotting disorder, nothing to do with lupus.

tinselknickers Fri 14-Apr-17 18:05:37

I have POTS and I couldn't understand why so I asked my GP to test for Lupus following a month's unsuccessful treatment for a purple toe (random). I had a positive ANA test and saw a rheumatologist quite quickly.

Lupus was confirmed via other bloods - one was 'sticky blood' and I have a butterfly rash. I'm on plaquinol (sp?) and painkillers and the fatigue has reduced a lot.

I'm due a painkiller now, which is just as well since I was struggling to get up from kneeling just now confused

Persevere - it's not an easy diagnosis flowers

blahblahblah2000 Fri 14-Apr-17 23:15:28

Just wanted to add I've never had the butterfly rash. And the lupus forums can be scary as everyone on there is so sick, but please remember also that once people start feeling well they tend not to post as much so it is slightly skewed!

BloodWorries Wed 19-Apr-17 15:48:15

Thank you for the replies. I've been in too much pain with my hands, arms and shoulders to be able to do much of anything, including pick my laptop up.
The past few days I've been absolutely exhausted, yet unable to sleep for more than an hour or so at a time. Left me feeling very emotional and frustrated.

I'm still sore and shattered, but feeling better so hopefully I was just a bit run down from something. I do have periods like this, really tired, no motivation for anything (even the things I like) then a few days later I'm back to normal.

OldStudenMum the GP has done that crappy 'Am I depressed' quiz with me before, suggested pills and sent me for counselling. It was decided at the counseling session that, whilst there are lots of stressful things going on, I'd do better to have a referral to pain management and sort something long term. Although this was before the op to help, and I did start to improve. But might be worth a talk. I took myself of my painkillers (with a general yeah you can if you want from consultant after op) because I hated how they made me feel. The withdrawal was horrendous and I try to take as little as I can, and never for more than a few days in a row.

Tinsleknickers, thanks for the reply. I had a quick google for POTS and that sounds scary flowers I'm very confident I don't have that. I do however have raynaud's which can cause fingers, toes, hands, feet to turn white or purple. According to a couple of sites it is another common trait in those diagnosed with lupus. I'm pleased to hear the fatigue has decreased for you, that is one of the things that concerns me most as I've been out of work for so long and just pottering around the house wipes me out.

Blahblah, those forums are bloody scary, and figured at least until I have more information from the GP and get a diagnosis them it might be best to avoid them. My dad was looking at the symptoms the other day and read a few he thought fit me, and a few which he didn't know did. But I'm trying to avoid reading anymore into now. If I've got it I will deal with it, if not then I'm starting to wonder if there is something else going on...

LivingInMidnight Thu 20-Apr-17 23:35:13

I'm lupus anticoagulant positive but don't have lupus. It's weirdly named. Honestly, GPs are not the best at this stuff. It might be worth pushing for a rheumatology referral.

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