Sticky Blood-Hughes Syndrome Support
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Mixed Connective Tissue Disease

Hi there, I was diagnosed with APS & Sjogrens back in 2008, although at the time the Specialist

said he thought I had Mixed Connective T.D., no bloods or anything to show for this. I have

had the usual sicca symptoms plus continuing fatigue. The last year stamina has been deteriorating

and I now have a diagnosis of Lung Disease. I am going for a further CT scan this evening. When

my GP read a brief report from my abdominal scan which had clipped the bottom of my lungs and

revealed the lung disease, he muttered a poor prognosis. Is there anyone on Health Unlocked

dealing with the same issue. I transferred from St. Thomas' 2 years ago, and now wish I hadn't

as I know there is so much knowledge from the Dr.s there. I would appreciate any comments, hopefully realistic not pessimistic.

2 Replies
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Hello, I have recently had exactly the same diagnosis. I have APS and Sjogren's as well. APS does not cause lung disease but Sjogren's can.

I have had two CT scans 6 months apart the second showed considerable advancement of lung fibrosis. Like you I have been given a poor prognosis. I am in Somerset & the Respiratory Specialist and Rheumatologist down here want me to have chemo (cytoxin) which I am declining at present as I have read a couple of papers on this and have yet to find evidence of significant improvement.

I also go to Guys and was being looked after by the brilliant Munther Khamashta and I would so like to discuss all this with him I really hope he comes back.

I do see a very kind doctor in his absence.

I am on 10mg of Prednisolone and have been told I must not reduce these. I also have daily injections of Clexane.

Where abouts are you? Have you a good team locally?

If you would like to talk at any time please PM me and I will give you my phone number.

Take care xx

Reply

Hello Sue and thank you for your prompt reply.Firstly I am not completely

au fait about how Health Unlocked works, so to PM you, that is a private

message isn't it. I would like your tel.no. and will work out how to PM you.

It was Munther Khamashta who said I had MCTD at London Bridge about

8 years ago. I had the scan last night and must now wait 2 weeks for the

reults and comments. I am loosing weight as I find eating exacerbates the

breathing , so am eating small amounts, probably not enough. Do you have

this problem? I am not really settled about the Doctor I see, as he is not

a Rheumatologist, but an Immunologist with a clinical interest in

Connective Tissue Disease. I see him for the APS, which I dont think he

is an expert in either.

Thank you again for replying and will endeavour to PM you.

Reply

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