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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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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While writing another post, I came across this video, which, in 3 or so minutes speaks volumes about a lot about this disease:

 Support those who know no relief from this disease that can strike any place in their bodies:

You can help those ‘who don’t look sick’ and click the blue button below to be taken to the website of the

Lupus Foundation of America

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Steroids for lupus

Does the sheer act of getting out of bed hurt so much that staying under the covers in your warm cocoon seem like a good plan? Does the thought of stirring your stumps petrify you? But, that’s just what your joints may need. A little ‘3-in-1- oil!’

Your doctor offered a solution: water (pool) therapy and a short course of steroids. While giving his proposal of steroids some thought this eve, you turned on the news and had an ‘aha’ moment! Steroids are what athletes use to body-build. Are you looking for 6 pack abs, bulging muscles and huge shoulders? Since your answer is a resounding ‘no,’ you explain to the doc ‘no thanks.’ That is, until he explains a few things about steroids.

But, not all steroids make you ‘run your fastest, jump your highest’ so that you can play in the big leagues! That’s only true of some type of steroids; there are three MAIN categories, and each category includes many steroid medications.

The first category we’ll mention is the anabolic steroid. They DO build muscle mass and are used by athletes sometimes to enhance performance. Several of these medications are either discouraged or are illegal. Usually these are the steroids that are in the news.

The second class of steroids is the androgenic steroid; testosterone is in this class. It, too can build muscle mass and give masculine features.

The third class are the Corticosteroids, the medications which we’ll refer to from now on when we mention steroids. These are the steroids your doctor will order; there’s no guarantee that steroids will be effective, but a decision must be made soon.

The last class of of corticosteroiods, include Cortisone,TM Decadron,TM BetamethasoneTM and HydrocortisoneTM . Those are the steroids our doctors may prescribe for lupus symptoms or to treat other causes of inflammation when over the counter non-steroidal medications (such as ibuprofen and naproxyn) aren’t effective.   Steroids are present in cell membrane to make them more stable. They are life-savers in asthma. But, why are they, these medications that can build muscle mass, used in the treatment of lupus?

The main reason that steroids are used in lupus is for their anti-inflammatory benefits. Lupus is a disease which causes massive inflammation in various parts of the body;  So, if  inflammation is causing symptoms, as in asthma (effectively narrowing the airways)  , a steroid might be indicated to decrease the inflammation which is narrowing the airways, making breathing normal again. This is a case where steroids can save lives.

Another use of steroids in lupus is in pleurisy, inflammation of the lung. The lowest dose that is will relieve symptoms and is necessary for treatment should be prescribed because of side effects of steroids. Steroids can have very good effects, but some very bad side effects; which include (in no specific order):

  1. interference with fat metabolism and forming clots which can cause heart disease and stroke .
  2. increase in weight
  3. increase in blood pressure
  4. agressive personality
  5. delusions
  6. psychosis
  7. osteonecrosis when steroids effect changes in fat metabolism that are such that the body ‘lays down’ fatty clots which can lead to bone death (osteonecrosis)

These isn’t an all-inclusive list of steoid side effects. Unfortunately, some of these side effects are permanent. For example, steroids are often given for asthmatic attacks because they can halt an asthma attack in it’s track, by decreasing inflammation of the bronchial ‘tubes.’  But, they can also have quite a damaging effect on the bones. So, a treatment decision may be, ‘To breathe and take your chances about developing bone disesase or not breathe.’ Quite an untenable position.

So, when steroids are good, they’re very very good; but when they’re bad, they’re horrid!

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