Possible Mild Case of Lupus

Here is a new curve ball.....The rheumatologist ran a bunch of tests and says maybe a mild case of Lupus is triggering ITP.
First of all is there such a thing as a mild case of Lupus? I have no Lupus symptoms just some slightly abnormal blood work.
Hexphospholipid 1.1 low,
ImunoglobG 2290 (norm 635-1741)
C-4 15 (norm 19-52)
Gamma Protein Fraction Serum 2.4 (norm .5-1.6)
Still waiting on some more tests.

Next, is an ITP Lupus patient treated differently than an ITP Patient? And if so how does the treatment differ? He says to use Rituxin. Is that a Lupus way to treat ITP?
I did see an article in the newsletter that low dose Rituxinn and Promacta given together has good outcomes.
Thanks,
Cindy

I've never really heard of a mild case of Lupus. Lupus is Lupus and the symptoms can be mild or severe, but that can go back and forth over many years.

I've also never seen those tests used for a Lupus diagnosis (except the C-4). The usual tests are ANA, dsDNA, Sed Rate, Anti-Sm, C3, C4, APS antibodies (Lupus Anticoagulant, Anticardiolipin and Glycoprotein). Symptoms are also part of the diagnosis and part of the criteria for diagnosis. These are the criteria for a diagnosis:

If you have at least four of the criteria on the list, either at the present time or at some time in the past, there is a strong chance that you have lupus.

1. Malar rash – a rash over the cheeks and nose, often in the shape of a butterfly
2. Discoid rash – a rash that appears as red, raised, disk-shaped patches
3. Photosensitivity – a reaction to sun or light that causes a skin rash to appear or get worse
4. Oral ulcers – sores appearing in the mouth
5. Arthritis – joint pain and swelling of two or more joints in which the bones around the joints do not become destroyed
6. Serositis – inflammation of the lining around the lungs (pleuritis) or inflammation of the lining around the heart that causes chest pain which is worse with deep breathing (pericarditis)
7. Kidney disorder – persistent protein or cellular casts in the urine
8. Neurological disorder – seizures or psychosis
9. Blood disorder – anemia (low red blood cell count), leukopenia (low white blood cell count), lymphopenia (low level of specific white blood cells), or thrombocytopenia (low platelet count)
10. Immunologic disorder –anti-DNA or anti-Sm or positive antiphospholipid antibodies
11. Abnormal antinuclear antibody (ANA)

If a person has Lupus, ITP is treated the same as anyone else with ITP. Both are treated separately, although some of the treatments can be the same or help both disorders.

Hi Sandi,
Wow you know soooooo much about Lupus and lab testing. I di have a positive ANA and Sojurnes. I'lllook up the other tests they did to see if they coralate with yours later and get back to you. But all the tests they did came back negative so far except the ones I sent to you. They say I have hashimoto thyroid antibodies which makes them think more autoimmune like Lupus. So confusing....

It can be confusing. The thing is, autoimmune disorders like Lupus can take a long time to develop enough to be diagnosed. A person might have one or two symptoms and only one or two labs that correlate with Lupus, but are unable to be diagnosed because they don't quite meet the criteria. ITP is on the list and is a red flag. That was my first symptom in 1998. I wasn't diagnosed with Lupus until 2006.

I am pretty familiar with Lupus because I researched it for years. Those 11 criteria are pretty standard in the US for diagnosis. I watched my labs and symptoms slowly get worse until I met the criteria. I didn't know I'd end up with Lupus until 2005 when the symptoms began, then I had an idea where I was headed. I was monitored every 3 to 4 months and saw the blood work changing. When I finally did meet the criteria, I had joint pain, muscle pain, felt flu-like, had fatigue, and the labs were: Elevated SED rate, Elevated ANA, elevated dsDNA, positive Anticardiolipin Antibodies and abnormal C3 and C4. Those are clearly on the list (plus a few extra).

The reason that I'm doubtful about a mild Lupus diagnosis is that Lupus can turn bad really quick. People have died before they were even truly diagnosed....the symptoms can sometimes hit hard and fast. I don't know that it's possible to diagnose mild Lupus until you've gone years and years without any progression of symptoms. A doctor could diagnose mild Lupus and the next month the patient has a serious complication. I think my Rheumatologist said I'd have mild Lupus too and it has not been mild. He said that patients with hematological symptoms (like ITP) usually have mild Lupus. Ha. The things they try to predict.

You definitely have autoimmune issues and the positive ANA is a factor, but the titer also matters. Sometimes labs label it as positive when the titer is 1:80 which means next to nothing. A titer of 1:320 or 1:640 means much more. My ANA was 1:320 for a year and a half before I was diagnosed because an elevated ANA by itself does not = a Lupus diagnosis. Having Sjogren's will also help to point to a Lupus diagnosis but it can also be a stand-alone disorder. Same with the anti-thyroid antibodies. They can both also contribute to a Lupus diagnosis, but generally not without four of the eleven criteria. Those need to be treated separately anyway...one by a Rheumatologist and one by an Endocrinologist.

I hope you don't definitely get that diagnosis.

Thanks Sandi,
That is really helpful. I'll try and dig down on the titer and numbers tomorrow.
Cindy

Hi Cindy,

I have Lupus and ITP. I was diagnosed with Lupus first at the age of 17 and ITP at the age of 20 (I'm 39 now).

Both my rheumatologist and hematologist believe that my ITP is secondary to Lupus. As a matter of fact, these days my only Lupus symptom is low platelets (and right now, I'm in remission with fairly normal platelet count). For the most part, I am fairly asymptomatic and have been since diagnosis. What led to my diagnosis was joint paint and swelling in my hands. I was a high school student and had difficulty holding a pen in class. Ironically, since diagnosis, I have not had any joint pain. The only issues I've had have been hematologic. I've had ITP, TTP, and hemolytic anemia. TTP was considered life-threatening (I was 20 at the time and had no clear of the severity) and spent a week in the hospital undergoing plasmapheresis treatment. I also have Reynaud's, a chronically low vitamin D level, and a chronically high Sed Rate.

When my platelets are low, my hematologist makes the treatment decision with my input. My rheumatologist takes a back seat. Quite frankly, at this point, my rheumatologist basically just monitors my lupus markers, i.e., C3, C4, ds-DNA, Sed Rate, Urinalysis, etc. every 6 months. Occasionally, he will order additional labs like b2-glycoprotein-1 and anti-phospholipid antibodies, but that is usually once a year or so.

As Sandi mentioned, I've never heard of a "mild" case of Lupus. Since Lupus can be difficult to diagnose, it is sometimes suspected for a while before a proper diagnosis is made. This is primarily, I think, because of the list of criteria Sandi outlined in her post. Some people may present with 3 of those symptoms which is not necessarily enough for an official diagnosis. When I was diagnosed, I had 5 of the criteria symptoms (lucky me).

I agree with Sandi - I hope you don't get the Lupus diagnosis. It is a frustrating disease that is never predictable.

Take Care,
Lauren

Hi,
Thanks so much for your note. I am glad your Lupus is not bothering you physically too much!
Plasmapheresis is not a treatment they seem to use anymore. Do you get low platelets often? What type of treatments are you getting for low platelet issues? Also, are you on low dose steroids?

I'm trying to figure out this maze is why I am asking.

Thanks Lauren and Be Well
Cindy

Cindy,

Plasmapheresis was used to treat TTP, not ITP. As far as I know, plasmapheresis has never been a treatment option for ITP.

My last recurrence of ITP was in 2014, and I treated with Prednisone, a couple Dex pulses, and Rituxan (I only had 2 1/2 out of the 4 infusions, though, due to reaction). I also had to treat a year prior (2013) with Prednisone and Rituxan. Unfortunately, I've had serum sickness twice, so Rituxan is no longer a treatment option for me. Right now, I'm not taking any medications except prescription Vitamin D.

When my platelets crash again (and they will eventually), I will re-start steroids. I prefer Dex Pulses over standard Prednisone because for me, the side effects aren't as bad. My hematologist does not recommend the TPOs for me because I've been positive in the past for beta-2-glycoprotein-1 antibodies which cause clots. So, steroids is my first line treatment option. Not sure what second line treatment will be, but I'll cross that bridge when I get to it.

Take care,
Lauren

Lauren:

I like your Hematologist. Good for him for staying away from the TPO's. I have had Anticardiolipin Antibodies and would stay away from them too.

I don't think I was ever tested for the clotting antibodies. Yet another thing to check into.