[pbjmom]

I am glad I stumbled on this site. I hope someone can give me some advice. I hope I dont bore you with my quick stats...

I am a 30 woman. I have been seeing a rheumatologist for the last couple months. About 10 months ago I had some testing because of a blood clot. I was found to have a positive lupus anticoagulant result with abnormal protein c levels. I also had a positive ANA screen (640 speckled pattern). It seems I have been tested for MANY things since (all seem ok). The only odd tests are low WBC and low red cells. I had another ANA test Monday and it is still 640.

The symptoms that I find most troublesome would be the EXTREME fatigue-no matter how much sleep, night sweats and some minor joint pain and swelling, protein in urine-. I have also had pleurisy and do get sick often. My main and most debilitating problem is being so tired. I am a semi-pro triathlete and have never experienced this fatigue.

I do not fit the other lupus criteria but my doctor says I could be in "latent" stage???

Does anyone have any suggestions/advice or thoughs on my situation. What does my ANA test really mean-or nothing at all?

I am a bit confused but am really tired of feeling so tired!!!!!

THANKS!

 

[Joandublin]

Hi there and welcome to the Forum

A positive ANA at that level, combined with your symptoms and blood work, would usually indicate an autoimmune problem, of which Lupus is one. The 'protein c' levels you mention is, I presume, a test for c reactive protein. This test is used to assess the levels of inflammation going on in the body but in the case of Lupus and Rheumatoid Arthritis it can also be low and if so it doesnt mean there is no inflammation. Confusing, eh?

Im not sure from your post if you are on any kind of medications or treatment? If you arent, then your Rheumatologist's 'wait and see' approach might not be the best approach particularly if he mentioned the possibility of Lupus. Many people present with symptoms which are clearly part of an autoimmune problem but dont fit enough criteria to be diagnosed with Lupus. In this case they are generally diagnosed with a condition known as Undifferentiated Connective Tissue Disease. What this means is a recognition of an autoimmune problem but just not enough evidence yet to say which one. In either event, Im surprised if you havent been started on Plaquenil, which is a disease modifying drug, to see how you get on.

The other thing that concerned me is your blood clotting event and your positive lupus anticoagulant test. Do you know if they ran this test again? Its usually done twice about six weeks apart to confirm the positive. The lupus anticoagulant test is badly named in that it actually has nothing to do with Lupus except that it was found that many Lupus patients had this antibody - but not all of them. The condition its tested for is known as antiphosphilipid syndrome (APS) or Hughes Syndrome and here is a link which gives good information about it. Have a look and see if anything else rings a bell in terms of your symptoms. Hughes Syndrome can be a primary condition without Lupus or it can be a secondary condition with Lupus.

http://www.hughes-syndrome.org/diagnosis.htm

I dont know what your doctor means by 'latent' stage Lupus. It sounds to me that it is a term he has come up with to perhaps describe the fact that he is not sure yet what is going on. In any event it is a confusing and misleading term and it would be well to ask him what he means by 'latent'. Unfortunately it can sometimes take a long time to uncover the evidence for Lupus but that doesnt mean that your Rheumy shouldnt start you on relevant treatment, if he suspects an autoimmune problem, to see how you respond. Actually it would be more appropriate to do so because if you have a good response to Plaquenil then this would also indicate that your underlying problem is systemic and autoimmune.

When do your see your Rheumy again? Is he aware of all your symptoms? Its important that you let him know how debilitating these symptoms are for you. For example simply saying you are tired doesnt get across to people the level of fatigue that we experience. Tell him what the fatigue prevents you from doing and how it is impacting on your life. Also, if you dont already, start keeping a diary of your symptoms and pain level record. This will help focus you and him at your appointments.

The protein in the urine is also cause for concern but it depends on how much protein is discovered. I presume they are keeping a good eye on this and checking urine regularly?

Something is definitely wrong with your body and I would strongly urge you to pursue things to get an answer. If we can be of any help in this journey we are more than happy to assist.

Hope this helps and I look forward to getting to know you
Joan:rose:

 

[Clare.T]

Welcome to the forum

If we got bored with stats and if a person can die of boredom I'd have been dead long ago ! :hehe:

I agree with Joan that there are grounds for concern and I would seek a second opinion if at all possible.
Protein C is a clotting factor and deficiency can cause clots.
http://www.nlm.nih.gov/medlineplus/ency/article/003659.htm

I think there may be other people here who in fact have Protein C or other clotting factor problems.
The lupus anticoagulant test and the test for anticardiolipins should be done twice at intervals of at least 6 weeks as either can be temporarily higher than normal.

If you look at the ACR criteria at the top of not yet diagnosed section you will see that these tests are listed as a possible criterion. Nobody has to have all the criteria.
The ANA is higher than would be expected if it was caused by any of the other diseases it can be raised in. There can only be a tiny percentage of healthy people with a repeated ANA at that level.

You don't say what treatment you are on as a result of the clot.

The usual first oral disease modifying medicine for lupus of any sort is Plaquenil which has the added advantage of slightly thinning the blood Many of us also take a low dose aspirin as prophylaxis against clotting events and general cardiac health because the rate of heart and associated disease in young women with lupus compared to healthy group is horrifyingly high. We can't say you have lupus or not and there is often a stage when the doctor has to decide whether to treat or not. On the other hand, some doctors won't diagnose until there is specific evidence or additional evidence, which there might never be, just worsening of symptoms. You also have the pleurisy which is very common and the protein loss which is abnormal even if it is slight. That is also very common in lupus.
And of course the crushing fatigue which is the symptom people complain about above all others. Other causes of fatigue can be fibromyalgia, thyroid problems, anemias, diabetes and often unacknowledged depression.

I think hematologists would normally deal with Protein C?

So that's why I would pursue this and try to get a second opinion. If that's not possible or in any case, ask him about Plaquenil saying that if you have lupus you would rather it didn't get worse and wouldn't it be interesting to see if you feel better, therapeutic trial as they call it. Most people tolerate Plaquenil very well and get only benefits from it.
If he asks where you got your information tell him the LFA website and other reliable sources. He shouldn't object to you being informed. If there's some reason why you shouldn't take Plaquenil he should be happy to explain why.

Please let us know how you get on and good luck

Bye for now
Clare

 

[Joandublin]

Thanks for that Clare. I didnt know about the Protein C! I learn something everyday here!

Cheers
Joan:rose:

 

[Clare.T]

:lol:

I happen to have been reading up on APS recently. There are a good number of clotting disorders they check for when checking for APS.

Hugs
Clare

 

[LolaLola]

Hello, Welcome here. I would urge you to learn all you can. Sometimes other old unrelated symptoms suddenly make sense in the overall picture.
x Lola

 

[Pink Pearl]

The main advice to you is to trust your body and your instincts. Exhaustion is there for a reason. As a triathlete you know what your body feels like, and when it is tired. If you are tired enough to sleep a lot more than normal, then your body needs help.

I also will advise a second opinion, or third if needed, in order for you to be able to get the help you need.

Take your questions typed out. My doctors keep them in my chart so they have them for reference. If you are having memory problems, take a small recorder and tell your doctor that this is what you need to be able to remember what you two have discussed. [This works for more than human doctors....I do this with my vet for my animals, and she keeps them as well.]
Hopefully this gives you some help,
Sally

 

[KarolH]

Hello and welcome to a great place.

As for your fatigue there is a great drug that I take called Provigil. It has been a life saver for me. In the US it seems to be prescribed easily yet in the UK it seems that doctors do not want to issue this drug to folks. This is not etched in stone yet what I seem to have been finding out just by talking with folks from the UK.

I would ask your doctor about it and read up on it. It really does help me and I just would not make it through the day without it.

I hope you get some answers. You have been given some great advice already in this post. Read all you can, knowledge is power.

Come check us out in the chat room sometime. Purple tool bar at the top right hand side.

Hope to get to know you better.:wink2: