TheLupusSite.com banner

1 - 20 of 22 Posts

·
Registered
Joined
·
8 Posts
Discussion Starter #1
Very fit, 42-yaer old male military officer.

No symptoms, healthy.

Small spot under eye, been around the bazars for a diagnosis for nearly two years. Everything from bateriological infection, Herpes Simplex, pre-cancerous cells, psoriasis, dermatitis. Nothing comfirmed, so sent for complete blood test.

Revealed a series of issues with my blood that leads them to think that I may have Lupus! The small rash under eye is apparantly not connected, no diagnosis for that.

Blood tests revealed: Double shunted DNA, Positive ANA, Positive Ro, Positive ENA and Lymphopaenia.

Wants me to go on a course of Hydrocholoroquine 200mg and follow-up in 6-months.

I am not sure what to do, as I certainly don't have any other symptoms. Any comments from a doctor, or anybody who has experienced similar?
 

·
Registered
Joined
·
7,800 Posts
Hello Chutley and welcome :)

Your story is certainly unusual. In order for a diagnosis of lupus to be given you must meet at least four of a list of criteria - you clearly don't as diagnosis is given based on laboratory results AND clinical symptoms of which you say you have none.

The criteria are here if you want to take a look

http://www.thelupussite.com/forum/showthread.php?t=33123

Some people in the healthy population may have positive ANA, certainly lower positives, for a number of reasons. I think however that it is pretty unusual for that to extend to Double stranded DNA and other more specific tests.

I have never heard of anyone being given plaquenil on blood tests alone (but then there are possibly many things I have never heard of :lol:) and am wondering why the doc would want to do that even if it is a very safe drug.

As this is a patient support forum, you won't get any answers from a doc on your questions (even if some of our members are highly experienced and knowledgeable). We cannot "replace" a doctor in any way and it is, in fact, against our guidelines to even have a screen name with a medical reference as that may influence people and be dangerous to our members.

If I were you, I would seek out a second opinion from a reputable rheumatologist who is specialised in auto-immune diseases.

bye for now,
Katharine
 

·
Registered
Joined
·
14,661 Posts
Welcome to the forum Chutley

Most people go to the doctors with symptoms and it might take years before anybody thinks of doing lupus testing. Testing for lupus isn't normally done in the healthy population of course but studies have been done on US military personnel who can easily be tested in the course of their medicals and tracks kept on their health records over several years and the individuals can be easily followed up.

These tests showed that auto antibodies can be present long before there are any disease symptoms. I seem to remember that antibodies had been present in about half of those who subsequently developed SLE.

http://content.nejm.org/cgi/reprint/349/16/1526.pdf

http://lupus.webmd.com/news/20031015/body-shows-early-clues-for-lupus

That is quite an impressive collection you have there ! By the way, anti Ro is part of the ENA panel so I wonder if that means anti Ro was the only one of that panel that showed positive.

I would guess that they are suggesting HCQ/ Plaquenil) as a prophylaxis against the development of clinical disease ( symptoms) or to delay development if that is on the cards, which nobody can tell. It can stop the number of antibodies increasing or lower the counts

Plaquenil is a remarkable medicine with many good side effects in addition to its important disease modifying properties but a very low incidence of serious side effects and those occur very rarely. You will also be tested for possible hidden side effects on blood or eyes. Studies have shown that people on Plaquenil live longer, suggesting less serious disease, and suffer fewer flares.

I wouldn't hesitate to take it in your circumstances - you have nothing to lose. By the way, make sure urine has been tested. You would do well to do whatever you can to avoid unnecessary sun exposure and wear a broad spectrum sunscreen. Not at all easy in the military I know.
The anti Ro antibodies are often associated with a high level of UV sensitivity. UV exposure can promote systemic disease activity as well as causing unsightly even disfiguring skin problems.
The HCQ can provide a small measure of additional protection. 200 mgs is half the usual therapeutic dose.

Keep an eye out for the appearance of possibly related symptoms and don't put off seeing a doctor if you have any concerns whatsoever.


Naturally I can't comment on your current skin problem. If by any chance it is lupus related the HCQ could help with it.

All the best
Clare
 

·
Registered
Joined
·
7,800 Posts
See, told you there were loads of things I hadn't heard of :rotfl:
Thanks Clare for that info.
 

·
Registered
Joined
·
14,661 Posts
See, I am full of it :rotfl:

By the way, it is usually called double stranded DNA, ds- DNA, and is regarded as highly specific for lupus.

:)
Clare
 

·
Registered
Joined
·
8 Posts
Discussion Starter #6
Thanks for the replies and excellent links to the articles.

Looks like I have the beginnings of Lupus - the abnormal antibodies but no symptoms. However, I think I will seek alternative opionion before I commit to a lifelong drug.

Seem odd - 42 year old, white, healthy male: about as far away from the usual supects.
 

·
Registered
Joined
·
4,444 Posts
Did they do a biopsy of the rash/spot under your eye? They can also do a skin biopsy from an unaffected area to try to ascertain whether you have skin lupus.

In your shoes, I would also want a second opinion before starting on medication. I would also probably want a skin biopsy specifically to better determine if it is lupus or not. You may want to get copies of your blood test results to see how high the level of antibodies are; low positive ANA's are often insignificant especially in the absence of symptoms.

If further testing and a second opinion also recommends Plaquenil, then rest assured it is a very safe medication to take and may help you in the long term in numerous ways. Good luck & I hope you come back and let us know how things sort out.
 

·
Registered
Joined
·
8 Posts
Discussion Starter #8
No biopsy has been carried out; part of the problem is that the rash is very intermitant and on the occasions I have ben to see a dermatologist/opthamologist and rheumotologist it has not been there. I will ask for a biopsy anyway in an attempt to obtain a firm diagnosis.

My ANA scor was apparantly 1280,whatever that means.

I also feel the need to ask for a second opinion. To that end, has anybody any experience of the London Lupus Centre? Prof G Hughes is meant to be a wolrd leading consultant.

Thanks for your advice - much appreciated. I feel I have somewhere to ask questions as they seem to rush you through the consultant's office - very busy people.
 

·
Registered
Joined
·
7,800 Posts
Hello again,

A biopsy can also be taken from an "unaffected" and unexposed area (that's what they did with me).

The London Lupus Centre has an excellent reputation. I believe that prof Hughes no longer sees patients himself but he has an excellent team. People on the boards here have highly recommended Dr D'Cruz, Dr Khamashta and Dr Edwards.

There is no rushing if you go to the LLC but of course it is not always an option to go privately for some people.

An ANA of 1:1280 is indeed a high positive ANA which I'm sure explains the rheumatologist's caution and wanting to give you preventive treatment.

Katharine
 

·
Registered
Joined
·
4,968 Posts
Hi Chutley,

Welcome to the forum. You have been given great advice here, not from doctors but from knowledgeable folks with Lupus who have taught me so much since I joined.

A second opinion is a good idea. I am in the USA but I do know that the London clinic has a awesome reputation. Sometimes I wished I were closer so I could go there.

A good book, The Lupus Book by Dr. Daniel Wallace. It is written in layman terms and really helps to explain Lupus so that you can understand it. It is the best investment I ever made.

I wish you luck moving forward. Let us know how you get along.:wink2:
 

·
Moderator
Joined
·
11,405 Posts
Hi Chutley,

Have you taken pictures of your rash? It always seems to disappear when there is a doctor appointment.;) That way you have something to show if the rash has vanished.

I have a brother that has SLE and I have it too. (female)

Take care,
Lyn
 

·
The Other Illinois Tammy
Joined
·
1,193 Posts
Hi,
It sounds like you might be on the road to a lupus dx, but there are more things then just blood that is involved in having that lupus confirmed. It is possible that you do have things going on and you just don't link them to anything yet. I know that until I came onto this site I thougt the fatigue was just age and over working even though I had slowed down some. The moving pains in my joints I thought was over use of a joint or walking to much that day. You can see were I am going with this I am sure.

I advise that you keep a journal of what is going on for at least a month and then make a list of questions about what is going. I would then take all of this to the doctor and see if any of it is relate to the lupus that is showing up in your blood tests. It might take longet than a month depending on what you are doing in that months time. I do hope that you find an answer to your problem soon and are doing well.
 

·
Registered
Joined
·
8 Posts
Discussion Starter #13
I have just spent 3 months on a ski instructor course - skiing hard 6 hours a day, every day. I am not sun photo-sensitive and have no joint pains. I exercise in the gym ast least 3-4 times a week.

I have none of the clinical symptoms of Lupus - just the blood results. the tiny rash under my eyelid is, according to the Rheumo, not related. Though it is the reason I had blood tests - previous ideas were Herpes Simplex, Bacteriological infection, Pre-cancerous sun damage, exzema, psoriasis, contact dermatitis and allergy to contact lens fluids.

The rash appeared 3 years ago - and has been back occasionally since. My original blood tests were done 18 months ago, which showed the abnormalies. I tested positive for double stranded anti-DNA, and also Smooth Muscle Antibodies. Other websites say that if you have both of these it rules out Lupus???

Anyway, as I am pretty good health - still run a 1 hour 30 mins half marathon - you can see why I am not going to start taking any medication until someone confirms I have something wrong with me!!

Appreciate your comments though - anybody else have a long lead-in to real symptoms before diagnosis?
 

·
Registered
Joined
·
4,444 Posts
Actually, testing positive for the ds-DNA antibodies is pretty specific for lupus. Not 100%, but they would lean much more heavily towards a lupus diagnosis than a positive ANA alone would.

Smooth muscle antibodies are associated with autoimmune hepatitis; but I wonder if you actually tested positive to the anti-Smith antibodies instead which are quite specific to lupus and often abbreviated as anti-Sm. Either way, testing positive to *any* of those antibodies certainly does not rule out or point away from lupus as a possible diagnosis.

In retrospect, I did have a number of symptoms (minor) for over 10-12 years prior to my lupus diagnosis. When I got sick with lupus, it happened fast and I went downhill fast and got a quick diagnosis compared to many. For me, I had very bad dry eye (bone dry Schirmers test) about 12 years b4 diagnosis, then had several minor bouts of pleuritis over a period of years, some minor knee pain, wrist/elbow pain, then sun rash early in the summer only for a number of years. All of this before I got really sick with lupus. But I never complained much about any of it & it is only in retrospect that I can see they were all likely connected to lupus.

There was a classic study done using military members from the US that showed a number of them tested positive to ANA for several years before developing clinical symptoms of lupus. So it is definitely possible.
 

·
Pollianna
Joined
·
485 Posts
Hi Chutley, seems like the universe is looking after you. Most of us struggle after the onset of symptoms from anything up to 10yrs to get a diagnosis. I have no doubt your physical strength has helped keep the desease at bay but I was strong/am strong, physically lean and muscular. I was suddenly struck down.........

I saw Dr D'Cruz at the London Lupus Unit, well worth seeing this guy!! In your shoes I would take the Plaq knowing what I know now. What is it they say an ounce of prevention is worth a pound of cure
 

·
Registered
Joined
·
8 Posts
Discussion Starter #16
Smooth muscle antibodies are associated with autoimmune hepatitis
I definitley tested positive for both anti DNA and Smooth Muscle Antibodies - in black and white in the letter from the consultant.

Confusing, as some websites I have looked at say this is the test that differentiates between autoimmune hepatitis and Lupus.
 

·
Registered
Joined
·
14,661 Posts
Hello again Chutley :)

If the last tests were 18 months ago it is time to get the whole lot repeated
I am surprised the docs didn't advise repeating them and reviewing your case after at most one year.

While it is true that ASMA could help differentiate from lupus, the statement is so simplistic it is hardly worth making. These diseases are all very complex and need expert assessment.
There are numerous other relevant blood tests for liver diseases and AIH and of course as always symptoms are an essential part of the diagnostic picture. Anti ds DNA is 97% specific for a lupus diagnosis but can be found occasionally in other diseases, including liver disease, not associated with lupus

People with lupus can have liver disease and might even have AIH too. Some people with a disease called Sjogren's, often associated with lupus, also have secondary biliarry cirrhosis. Just about any combination is theoretically possible.

Most people have lupus symptoms for several years or even a lifetime before they get diagnosed. Studies are very rarely if ever done on healthy individuals because they are time consuming and costly and it is impossible to get people involved for any significant length of time or keep track of them. Even that US military study had severe shortcomings . For example maybe some of those people did have signs of lupus but they didn't think anything of them or the doctors didn't look for them or ask about them.

After seeing what recent tests, not forgetting urine, indicate and what your doctors think now, I would then fork out £200 odd for the second opinion of a world class lupus expert at the London Lupus Centre. Most probably they won't commit to the likelihood of you developing lupus because they cannot be sure enough but they could advise on whether they think it's worth you starting Plaquenil. You do need to keep a close eye on your health. Some of the worst forms of lupus like kidney disease creep up without warning.

Please let us know how you get on - it's a very interesting situation and your experiences might help others.

Best of luck to you and I hope you remain as fit and active for many many years to come.

Cheers :)
clare
 

·
Registered
Joined
·
8 Posts
Discussion Starter #18
Clare, and all the other who have contributed, many thanks for your comments.

Sorry if I didn't make it clear, but I had my original blood tests 18 months ago. I've since had them done again last October, and most recently in March this year. Doctors are monitoring me!

First set was done by a dermatologist who suggested acute Lupus - skin type -but acknowledges I wasn't photosensitive.

Second set in October by a Reumo who said tests indicate Lupus, but probably not as I didn't have a single symptom.

Third lot by Rheumo who said I probably have SLE, start taking the drugs, but again acknowledged no clinical symptoms and my ESR was normal.

You will appreciate why I still remain unconvinced. I will now push for a skin biopsy to get a more positive result before I start taking drugs.
 

·
Registered
Joined
·
8 Posts
Discussion Starter #19
I'm still unsure ahte to think or do. However, I have got an appointment scheduled to see my Rheumatologist on 28th July.

In the meantime, I have just had another urine test and I'm absolutely clear of anything, so a good sign there is no change yet.

We were moving house, and taking out a mortgage, when this all happened so I was arranging some new life-insurance. Yep, you guessed it, after informing them of my bloodtests - on the grounds that they will find out anyway if I ever need them - they have cancelled my policy. Let's hope I live a while longer as my partner will not have an insurance to cover the mortgage should she need it.

We were also 3/4 of the way through our application to emigrate to Canada when I retire from the military. Knowing what we do now, I think that I will 'fail' the Canadian Medical Screening. In addition, it is probably not a good idea to move to a country where you have to pay for your own drugs - I am probably about to embark on drugs for the rest of my days.

So on the one hand I'm grateful that a trivial rash on my face has revealed the possible onset of Lupus early. But on the other hand, it has radically changed plans - and that on the CHANCE that something might develop. I really hate to start taking drugs and be classified as a Lupus sufferer whilst I am still very healthy and active!

I do appreciate the comments I've received on this site - especially the link to the US Military Study. That in particular has helped me understand how I could have blood indicators yet still be perfectly and disgustingly healthy.

Big Tough Airborne Soldiers are not supposed to get this kind of illness - we prefer the stuff given out by AK-47s. :worried:
 

·
Registered
Joined
·
152 Posts
Chutley,

When I was diagnosed, I was floored because I thought I only had a couple symptoms. (Chronic fatigue, swollen glands...) The rheumatologist did blood work and said, "You show inflammation in your bloodwork. Your joints SHOULD hurt." I think it threw off the mind over matter arrangement I had going on, because now I am aware of my joints hurting, all the time. To be fair, I think they did hurt, but I never made a connection, and I've been chalked up to anxiety and depression for so long that I tend to ignore things that aren't really serious. Heh. I once went a month with a kidney infection before it finally DEMANDED my attention.

And just because you have lupus does not mean you have to suffer! If you've got no symptoms, you're probably in the begining stages... And no organ involvement... Count your blessings. And exersize notoriously helps with symptoms, so it could be that your work out routine is keeping you symptom free. Just make sure you're listening to your body, so to speak, and not over-doing things, because you can hurt yourself.

Curious how you liked the army. My husband is a brand new officer.
-Elizabeth
 
1 - 20 of 22 Posts
Top