High ACE levels - what does it mean?

[aussie mum]

Hi everyone,

I'm hoping the wonderful brains trust on here can help me with some questions regarding some blood test results.

My daughter no 2 was diganosed with sjogrens at 17, 11 yrs ago now. My those years have gone quickly.
Postive ANA, SSA etc made a very quick diagnosis journey for her.

Now, daughter no1 (aged 30) has been very unwell for 4 months now. Pain, fatigue, headaches, brain fog, frequent colds.
Apart from a consistantly elevated CRP and ESR and very recent positive for Glandular Fever, she's testing negative to everything until now.

She's recently had a high ACE result, the Rheumy has sent her for a chest CT scan and we are still waiting those results.
Not surprisingly, I've googled and seen the list of possible diseases.

My main questions are:
If the CT scan comes back clear, what happens next.
Is the high ACE level a sure sign that there is disease activity.

Breaks my heart to see another child apparently headed down the Auto immune road. 

[Linda196]

High ACE (angiotension converting enzyme) can be an indicator or Sarcoidosis, and a CT of the chest is the next logical step. If the CT is negative for enlarged hilar lymph nodes (which happens in around 10% of Sarcoid patients, the next step is a scalene node biopsy, which is a small node in the neck, in the "V" between the collarbone and the shoulder muscle.

As you have probably seen, elevated ACE levels can also mean infectious diseases, including mycobacteria, which can be difficult and time consuming to culture and diagnose, but would be something to investigate if Sarcoidosis is ruled out.

In many cases, Sarcoidosis follows a self limiting course, and seems to burn itself out in 18-24 months, but the treatment is very similar to that for Sjogren's, including steroids, DMARDS and immune modulation.

As to whether the elevated level is a sure sin of disease, that's a difficult question. There's always a chance of aberrant lab results, but given the symptoms, unfortunately that's probably not the case, and there is something going on

[aussie mum]

Thanks for your reply  Linda.

We've been living a rollercoaster ride with our daughter since March, so we're hopeful of some kind of diagnosis, or more importantly, treatment, will come from these latest tests.

[Carolina]

Dearest Aussie Mom,

I have no advice or experience with ACE, but I am a mother and a grandmother.

The pain you are experiencing, the helplessness, and the hard work of caregiving and standing by unable to 'make it all better', my heart is full for you.

Please know that we are listening and caring, miles away but close in love and caring.

Love, Elaine

[aussie mum]

Thanks so much for your very kind words Elaine.

The wonderful people on this site have been such a wealth of knowledge and support to me over the past 11yrs, since we started on the journey that is autoimmune.

It appears my gene pool is the cause of both my daughters illnesses,  which is a bit hard to take. But, me wallowing in guilt doesn't help anyone.

I'm on a mission to get a diagnosis for daughter no 1.

At first I thought it must be Lyme. They don't recognize Lyme disease in Australia (they feel we don't have the right ticks)  but DD1 has worked the past 4 years at a summer camp in Maine and had tick bites there. She was finally tested (and the Dr actually started the treatment just in case)  but those tests came back negative.

Thyroid,  SJS,  Lupus etc all come back negative.
She tested negative for Glandular fever in March, but positive with a current infection in  August.

The poor kid has only been to work and Dr's surgeries over the past few months, so who knows when and where she picked that up.  She's currently on unpaid leave from work. 

I hope I'm not being too hopeful that this ACE test will give some answers. 

This sero-negative experience on a quest to diagnosis has become horrible, frustrating and depressing.

[Linda196]

I missed the link to the currently active glandular fever (mononucleosis)  in the original post, but that in itself could be sufficient cause for the symptoms and the elevation of the ACE levels, as a response to an active infection.  It is also a known trigger, and common precursor, for autoimmune disease.

Testing for Lyme is notoriously inaccurate, and I would imagine that, in an area not familiar with or in acknowledgement of it's risk, the tests may not be the newest, "state of the art" ones. Has the treatment been continued after the negative test?

[aussie mum]

Thankfully the Rheumy thought it wise to treat for Lyme just in case. She had to take antibiotics twice a day for a month.
I think it was Doxycyclin. Does that sound right?

We were also lucky the gp decided to test for glandular fever again, as she had tested negative in March,  positive in August. She was particularly unwell during this time, having two trips to the ER with extreme headache and back pain.
The worst of the glandular fever fatigue seems to have passed but now the joint and muscle pain has increased again.

It's interesting you mention the glandular fever infection could elevate the ACE level,  I know her ESR and CRP went sky high during this period, so maybe we should prepare ourselves to hear that the ACE test is not significant.

Thanks again for your reply Linda 

[aussie mum]

We saw the Rhumatologist today.

The CT scan came back clear,  so no evidence of Sarcoidosis.  Thank goodness.

He feels the elevated ACE levels where due the viral infection  (glandular fever).

Although we know something auto immune is going on, unfortunately, she still doesn't have a definitive diagnosis.

As her pain symptoms have increased again, he's decided to start her on plaquenil as well as anti inflammatories.

Thanks again Linda and Elaine for your advice and support.