The bleeding won’t stop!

Idiopathic Thrombocytic Purpura. Say what? Forget that it’s difficult to pronounce; what the heck does it mean? You’ve heard of red cells and white cells in the blood. There is another kind of cell; that cell is the platelet.

Technically speaking, platelets aren’t cells because they lack DNA. (To be considered ‘real’ cells, ‘cells’ need a nucleus with DNA). Platelets lack DNA, so technically they are not cells). But they, platelets (thrombocytes) cause the blood to clot.

People who have lupus can have low numbers of platelets for several reasons. In lupus and in all autoimmune diseases, cells of the immune system attack other cells. When platelets are attacked and killed, their numbers are decreased resulting in thrombocytopenia (low platelets in the blood); blood may or may not clot. That is one of the many reasons they check your platelet count before surgery. Can you see the headlines now? ‘The operation was a success, but the patient bled to death!’ It has happened.

Another reason that people with lupus might have low platelets is APS or antiphospholipid syndrome; another clotting disorder, often caused by lupus which increases the likelihood of blood-clotting. How could this be so? An increased likelihood of clotting at the same time there is a decreased likelihood? Platelets are so busy causing blood to clot in in all parts of the body, that in some areas, there are not adequate numbers of them to cause blood to clot. So much for the thrombocyte (thrombocytic) part. So much for the thrombocytic part and on to the idiopathic part!

‘Idiopathic’ simply means docs don’t know what causes something to happen. 

Purpura is a simple reference to what can happen when blood fails to clot. Blood may pool close to the skin surface, eventually clot and there is a resulting purplish discoloration; purpura or in it’s very technical term: bruising!

There you have it, ITP or Idiopathic Thrombocytic Purpura, sometimes not hazardous, but it can be serious and depending upon the severity, ITP may or may not be treated,. If it is treated, Plaquenil,™ steroids, Benlysta,™ CellCept™ or mycophenolate are among many meds of choice Other treatments can be Rituxan™ or in more severe cases, the surgical removal of the spleen (splenectomy). New treatments are in clinical trials, now.





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What is Factor V Leiden mutation?

Factor V Leiden-guest post and reposted with permission of the author, Cassandra Schnupps


BASIC FACTS about Factor V

  • Factor V Leiden is an inherited blood clotting disorder. It is a specific gene mutation that can result in thrombophilia (an abnormality of blood coagulation that increases the risks of blood clots forming in blood vessels).
  • People who are heterozygous (carry one gene mutation) or homozygous (carry two gene mutations) are at higher risk of developing a DVT (deep vein thrombosis).
  • Factor V Leiden is the most common clotting disorder. 3-8% of Caucasians in North America carry the gene mutation.
  • Factor V Leiden can cause miscarriages. Pregnant women with Factor V are considered high risk and need to be on a course of low molecular heparin or it’s derivative, Enoxaparin Sodium (generic name is Lovenox), during pregnancy.


  • Factor V Leiden along with other blood clotting disorders has been DIRECTLY linked to Osteonecrosis/Avascular Necrosis.  There are several clinical papers I have included on this blog concerning this fact.
  • If you have Factor V you should NEVER take steroids. Even a 20 day use of high dose Prednisone can cause ON/AVN.
  • If you have Factor V NEVER take drugs with estrogen, ie, the Pill.

Much of this information has been obtained from Dr. Charles Gleck who has worked consistently in the area of metabolic disorders. Dr. Glueck is an endocrinologist in Cincinatti, OH and is recognized internationally as an expert in treating and preventing osteonecrosis.[

Ms. Schnupps has a blog at . Her blog is solely devoted to osteonecrosis/avascular necrosis. But, why do I place a post about Factor V in this the musculoskeletal category? Factor V increases the body’s likelihood of developing a clot and clot formation greatly increases the chance that a blood clot will form, obstruct circulation to the bone and depriving it of life-sustaining oxygen and nutrients. When deprived of oxygen or nutrients for a long-enough period of time, the bone dies: osteonecrosis (bone death) or avascular (without blood) necrosis.

Also of note, for obstetric patients who have lupus or another autoimmune disease, they may be considered ‘high risk’ because if there is likelihood of increasing clotting ability, the placenta may be blocked with a clot and oxygen and life-sustaining nutrients don’t get to the baby. Thus there is a high degree of miscarriages among patients with Factor V.






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LUPUS, in a nutshell

Every disease, everything that ails us, usually has a descriptor, a very easy way of describing it. and here is a lupus descriptor that is a very basic. Future articles will expound on this video:

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Thank you

 🙂 Let’s break away from “sick talk” for a while. 4 1/2 years ago, I launched this site as “Lupus Chronicles” and changed the name to “Lupus Guru” in May 2o14. Today marks 37,000 times (NOT INCLUDING ME) that my blog has been viewed. My friends from the blogosphere have viewed THIRTY SEVEN THOUSAND times. To many that may seem like ‘chump change,’ but to me, who hasn’t done a dang thing to promote or market this site, I’m calling it a ‘miracle.’ There are a lot of lupus blogs out there and one year I was on the 13 best lupus blogs of 2013. Never matter that I was probably 13th!


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“Antiphospholipid Syndrome and Lupus Anticoagulant”

This podcast is part of the Lupus Foundation of America‘s “Ask the Experts” series and was broadcast today. It is also available is also available in archives maintained by C-span for the public domain about Antiphospholipid Syndrome (APS).

Remember that in autoimmune diseases such as lupus, the body mounts an attack on itself, and in APS, the attack is mounted against phospholipids in our bloodstream. APS  is the condition that results when these cells are damaged during the attack. This damage can increase the risk of blood clots in lupus patients and putting the lives of pregnant women with lupus at risk as well.

APS isn’t limited to people who have an autoimmune disease; the general population can get APS, too. Often people who have APS need to be on anticoagulation therapy, such as Coumadin ™ for life.

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Interview with Dr. Donald Thomas-lupus and Sjogren’s Syndrome

Comprehensive, yet easily understandable, this interview with Dr. Donald Thomas, M.D. discusses 27 secrets to living a better life with lupus and other and other autoimmune diseases. His book, “The Lupus Encyclopedia” needs to be in the library of every lupus patient.

Continue reading

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Lupus affects my blood, too?

What, lupus affects my blood? “Stop the world, I want to get off!” Yes, lupus greatly increases your chances of having Antiphospholipid Syndrome.

Anti-what? Normally proteins in the blood bind to components of the cell wall (phospholipids). In lupus, the immune system mistakenly attacks these phosophlipids, destroying them and resulting in damage to the cell wall. Doctors call this ‘Antiphospholipid Syndrome (APS)’ or ‘against phospholipids. When this happens to the arteries and veins, blood clots can form, sometimes deep vein thrombosis (DVT).

When these blood clots travel, they can create other complications, including stroke, heart attacks, osteonecrosis and kidney problems. These will be discussed individually in other posts.

Not all lupus patients have APS, but it occurs in a significant number. APS can also affect the ‘general population’ and can affect their blood clotting, especially pregnant women.

Treatment of this disorder consists often consist of medications to prevent excess clotting, such as Coumadin (warfarin), Heparin or Lovenox and is often a lifelong commitment.

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