Could this be Lupus

[Lorraine44]

My husband, a very fit and active person, became ill last year and was eventually diagnosed with a clot in his lung and Anti phospholipid syndrome . His health has deteriorated quite badly over the last few months and he has gone from running, cycling up hills etc to being barely able to walk a few hundred yards without severe lung pain. He has Raynauds, has lost a stone in weight, has fatigue, pulls muscles at the drop of a hat, has experienced mouth ulcers, bursitis, night sweats, swollen glands, but no rash, joint pain and his pAnca test is negative . He also had pneumonia 2 months ago,and has had numerous emergency hospital,admissions with severe lung pain. Once the exclusion of a new clot is determined, he is sent home again, this time with morphine.

My question is, does anyone think this may be Lupus? He is passed from pillar to post but never seems to get an answer. Meanwhile his health continues to deteriorate.

[jojo-lianne]

I've also found myself up at A&E with severe chest pain on a few occasions. Likewise I get sent home once they realise it's not another dreaded PE.

When I spoke to my rheumatologist about it she said that chest pain was actually a common but far less well known lupus symptom. Something to do with the connective tissue, the pleura and joints between the ribs and sternum becoming inflammed.

Obviously I can't tell you that's what he's experiencing but it would be worth discussing with his consultant. Especially as you don't have to be displaying all the classic symptoms to have lupus. Mine come and go and I never displayed the malar rash until well after I was diagnosed.

I hope you get a good response from the Dr's and get a better picture of what's really going on soon.

Take care

Xx

[Lorraine44 in reply to jojo-lianne]

Thank you. The Rheumatologist is aware of him having lung pain but it has become much worse and neither the GP nor ourselves have been able to contact her

[daisyd]

Have you looked at the Hughes web site too

[Lorraine44 in reply to daisyd]

Hi, no I haven't. Do you mean in health unlocked?

[Paul_Howard Partner LUPUS UK]

Hi Lorraine44,

We aren't able to tell you whether your husband might have lupus of not. It sounds like he has been experiencing some of the common symptoms of lupus, but many of these symptoms are not exclusive to lupus and could be caused by his anti-phospholipid syndrome. Has he requested blood tests for lupus?

If you think it would be helpful I could send you one of our free info packs which includes a booklet about how lupus is diagnosed. Just send me a private message or email [e-mail] with your name and address if you'd like one.

[Lorraine44]

Thanks Paul. Yes, I have read the leaflets. He has had many bloods done and as far as I am aware the pANCA was neg. it's just very difficult getting answers. There is auto immune disease in the family. My son has Ulcerative Colitis and auto immune liver disease ( Primary Sclerosing Cholangitis) and my husband has a few family members with RA. It is just very difficult watching him deteriorating while being passed back and forward between consultants. No one seems to take full responsibility and try and get to the bottom of it. Hopefully get an answer soon

[daisyd]

Hi Lorraine yes Hughes syndrome ( sticky blood, Antiphospholipid syndrome all the same condition but on the healthunlocked site you may find more information, on blood clots

[Lorraine44]

Thank you