[technogiant]

Hi all, I'm new to your forum and wondering if I might have lupus.

I'm a 45 year old male and have recently been diagnosed with quite a rare condition Coronary Artery Ectasia. This is quite rare in that it is the isolated form ie not associated with atherosclerosis.

In its isolated form this is usually caused either by congenital disorder, certain inflamatory diseases in childhood, connective tissue disorders and has been linked to lupus. I have had none of the other causes but am concerned that I have several lupus indicators.

From puberty to date I have had a red flaky rash extending around my nose and onto my cheeks.

From childhood until the age of 30 I was plagued by very large mouth ulcers that always arose in crops of several at a time.

A few months following the diagnosis of Ectasia I developed pain in my joints of my fingers and wrists, this has continued for about 6 months and is also starting to affect my elbows and shoulders. My GP has tested for rheumatoid factor and smooth muscle auto immune but neg. I believe inflammatory markers were also checked and were not elevated.

I don't wish to appear a hyperchondriac but I'm searching for a reason for my ectasia which doctors believe I "may" have had all my life but I'm convinced has been a recent development.

 

[Lily]

Hi technogiant and welcome :welcome:

I certainly dont think you are being a hypochondriac in seeking answers for your health problems. It's just being pro-active and there's a huge difference, obviously there is something going on.

There are a few things you can do to try and either rule in or rule out Lupus. With the rash it would be an good idea to see a Dermatologist and find out exactly what it is, in cases of suspected Lupus they can (and will) often biopsy affected and unaffected skin which can sometimes prove the disease is present. Unfortunately a negative result does not mean you dont have Lupus though. A positive one means you definitely have some kind of Lupus.

Has your GP ordered an ANA blood test to your knowledge? That is the first screening test for Lupus and many other autoimmune diseases. It can be an important diagnostic tool but by no means specific to lupus as it can be associated with other problems, but at least its a start.

He has probably run things like ESR and CRP as inflammatory markers. CRP is often not raised in lupus patients and ESR only raised in some. However from a GP's point of view they are the first tests they will run to see if some kind of inflammation is going on. Them being negative is not the be all and end all of your investigations. There are many other tests to help diagnose something like Lupus.

With your heart condition and the fact you have only seen your GP about your other problems I doubt he has tested you for something called Antiphospholipid Antibodies. The tests for that are Anti-Cardiolipin and Lupus Anticoagulant. Usually a Rheumatologist would run those tests as part of a full work up for lupus along with a slew of others. So a referral to one would be an excellent idea if you can wangle it. You should be able to considering your worsening joint problems alone. This condition can be present alone or with Lupus and can affect the heart and other blood vessels in the body.

Good luck with getting your referrals, I think thats probably the best place to start unless you have a very well informed and obliging GP who would run some of those other tests for you. Certainly he could start with the ANA if it hasnt already been done.

love
Lily

 

[LoopyLoo]

Hi technogiant,

I'm Pam from the UK and was diagnosed with SLE 18 months ago. It sounds like you've been on a really tough journey but I'm glad you've joined us. Whether or not you have lupus everyone here will give you the upmost support until you find out for certain.

Lily has given you excellent advice so I just wanted to welcome to this great site.

Hugz,

Pam xxx

 

[technogiant]

Thank you both for the warm welcome to your forum and Lily for the very helpful information. Certainly some interesting lines of investigation to be followed up and I will definitely return and keep you posted.

Thank you again for your help.

 

[Clare.T]

Hello techogiant

It is often the case that an acute health episode leads accidentally to diagnosis and then longtime history of various health problems is explained. The acute problem might arise from undiagnosed and untreated lupus or it can be the incident itself that triggers the lupus. The incident could be an accident or even essential surgey . The immune system can't distinguish The immune system gets galvanised into hyperactivity and very low level, subclinical lupus rears its ugly face.

You wrote

for a reason for my ectasia

. While you might find the reason incidently, the main thing is surely to be treated as necessary for the lupus.
I wonder what medicines you have been or are on for the ectasia. A number of heart medicines and several others can cause drug induced lupus. Make quite sure urine has been tested. Basic but surprisingly often neglected.

I suggest you read the information section of the site, the articles on Diagnosis and Testing, to get a better idea of the sorts of tests that are done. The criteria lists pinned at the top of this section give an idea of the sort of complaints that can lead to a diagnosis of lupus. The alternative criteria might also prompt reflections, although several items are not relevant to men with lupus.

You should never call yourself hypochondriac and if anybody accuses you of that explain that you can't be because hypochondriacs by definition don't know that they are. Ther's nothing wrong with being worried about your health and wanting to feel as well as possible.

Best of luck - please let us know how you get on . We'll help you all we can to find answers



Bye for now

Clare

 

[halfpintfl]

Hi Tech, you have already been given very good advice, and there is nothing I can add at this point. I just wanted to give you a warm welcome to this very informanative and suppotrive site. Everyone here always tries to help and support everyone else, so keep posting,we
are glad to have you here.