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Other Platelet Disorders
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Sjogren/lupus (?)
Other Platelet Disorders
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TOPIC: Sjogren/lupus (?)

Sjogren/lupus (?) 3 years 10 months ago #49437

  • redvens14
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:)

I am new here. I was recently told by my doctor that I probably have sjogren or SLE, but I only have very vague symptoms like extreme fatigue, possibly Raynaud's and sun rash on my hands when they're exposed in the summer. No dryness in my eyes, joint pain, other kind of rash, etc. I was also diagnosed with ITP about 7 years ago, but my platelets have been stable the past 4 years. I am very confused and have lots of questions related to the blood work, antibodies and conclusion, does anyone know where I can get an explanation of my results.. and maybe a second opinion?

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Sjogren/lupus (?) 3 years 10 months ago #49438

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Do you have your blood work results? Can you post them?

What sort of doctor told you this, a GP or Rheumatologist?

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Sjogren/lupus (?) 3 years 10 months ago #49439

  • redvens14
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Thank you so much for replying :)

I have a long list of blood work results, but I think these are the important ones:
SR, CRP: Normal
Beta2-glycoprot IgG and IgM: High
ANA-screening: Positive
Cardiolipin IgG and IgM: High
SSA and SSB: High (>8)
dsDNA, Sm-RNP, Sm: Negative

My doctor is a rheumatologist, and prescribed Plaquenil. I have read that you can't diagnose lupus/sjogren without symptoms, and find all this very confusing.. is it right to take medications at this stage, or should I have a second opinion? Does the antibodies mean that I have the condition, or that I will very likely develop it?

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Sjogren/lupus (?) 3 years 10 months ago #49444

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Your doctor is right, Lupus cannot be diagnosed without symptoms. It can develop slowly so sometimes a diagnosis is delayed. Symptoms are part of the diagnostic criteria. Your blood work also does not definitively clinch a diagnosis. The dsDNA or sm-RNP are usually elevated in Lupus patients. Do you know what the titer was for the ANA?

Starting Plaquenil is a good idea for those who seem to be developing Lupus, as in your case. It can prevent or prolong symptoms and elevated blood work in some patients.

It does look like you have some antibodies for Antiphospolipid Syndrome. Has your doctor mentioned that? Those antibodies are common in both Lupus and ITP.

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Sjogren/lupus (?) 3 years 10 months ago #49463

  • redvens14
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Thank you for the reply! :)

I have read about it, but I don't know what the titer was. It only says "positive" on the paper. I will ask my doctor next time I talk to her.
That was what I was wondering about.. if it's likely that I'm developing lupus or a similar condition, since I don't have any specific symptoms yet. Then I agree that starting Plaquenil is a good idea. Is it possible to have the antibodies and never develop a condition?
Yes, my doctor did mention it in a sentence. I'm not exactly sure what it means, other than increased risk of blood clots. What do the doctors do if the platelet levels are very low and you get a blot clot at the same time? Giving blood thinners sounds like a bad idea..

Also, does a family history of glaucoma increase the risk of eye problems from Plaquenil?

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Sjogren/lupus (?) 3 years 10 months ago #49473

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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The ANA titer is important. The word positive can mean that the titer is 1:40 or 1:80 which is very low and doesn't mean anything significant. If it is 1:360 or higher, then the patient is at a higher risk and should be monitored closely.

Some people do have problems with low platelets and clots and yes, they need blood thinners in that case. It's a juggling act for sure. I also have the APS antibodies but have never had a clot (so far), so having the antibodies does not mean that you will. Knowing about the antibodies can affect ITP treatment choices though, since both splenectomy and TPO's also raise the risk of clotting.

I'm not sure about the glaucoma/Plaquenil question, but the protection that it can provide against Lupus problems might be worth the risk. In my opinion, it is.

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