View Full Version : Hi I'm new and my mom has lupus
06-11-2008, 01:19 PM
Hi i'm new to this forum my mom has sle. She just got out of the hospital yesterday . we found out that she had blood clots from her groin to her ankle and one in her lung. She had a vena cava filter put in and is doing better. We found out with her lupus and estrogen she would have these and nobody told us. I have researched alot but, does anybody have any suggestions for her as far as how to ease the symptoms of sle?
06-11-2008, 04:33 PM
Hi sttps and welcome.
I'm sure someone will be along soon with gobs of information for you. You can also look around the site. There should be some posts under the symptoms board.
I just want you to know that you have found a warm and supportive site.
My mother also had lupus as does my sister and I am now suspect but waiting for confirmation, which can take a while.
I feel your concern and upset. I hope you can find what you need here. Do you mind me asking what your mom's age is? A ball park figure is fine. How long has she been diagnosed and what medications is she taking?
06-11-2008, 05:37 PM
My mom is 57 yrs. old She has suffered for many years and was finally allowed disability. my mom takes prednisone, lyrica,nuerotin. she has sufferd alot of hip and leg pain and now since her hospital stay her pain is better except for the leg with blood clots. They believe she has been forming clots for awhile. Thank you for the information i have 2 aunts that have it also.
06-11-2008, 05:59 PM
sttps - You have come to the right place for sure. This website has both a wealth of information and some incredibly people to help you sort it all out. Its a safe and compassionate place for both the "lupie" and the familes with questions. I dont know much abot blood clots, however, there are many here that can help you with is so...please, stick around and see for yourself!
Welcome again and keep posting!
06-11-2008, 05:59 PM
My mom was on prednisone, I'm not sure if it's related or not, but she had a lot of blood clots as well.
I'm on arthrotec 75 and plaquenil. This is a fairly mild treatment.
It's hard to tell sometimes if lupus is causing the problems or the meds we take to fight the lupus.
06-12-2008, 10:02 AM
Hi Sttps :lol:
Unfortunately, there are several ways in which lupus can cause blood clots. The primary mechanism concerns the cells and clotting factors that circulate in the blood. As with other manifestations of lupus, the underlying cause is usually the presence of antibodies, which are proteins that recognize and bind to other proteins in the body However, instead of getting rid of an unwanted foreign protein (which is what normal antibodies do), the antibodies in lupus recognize self-molecules (usually proteins) and interfere with the normal function of our own proteins and the cells containing the proteins.
As such, many Lupus sufferers also suffer from an overlap disease known as Hughes Syndrome. In Hughes’ Syndrome, antibodies are formed that cause the blood to clot. These antibodies are called “anti-phospholipid antibodies" and they can cause the blood to become sticky and to clot easily. Since blood clotting disorders are common in both Lupus and Hughes’ syndrome, it is important to determine the cause of the blood coagulation. Coagulation is the natural process of forming a blood clot to prevent blood loss from a ruptured blood vessel.
Antiphospholipid syndrome (aka: Hughes Syndrome) is diagnosed by finding antiphospholipid antibodies in the blood and clinical features of increased blood clotting (for example recurrent deep vein thromboses or miscarriages), The antibodies can be detected by a specific test for the type of antibody, such as anticardiolipin antibodies, or by abnormalities In conventional clotting tests. Antiphospholipid antibodies interfere with many of the conventional clotting tests because these tests depend on phospholipid for the test to work normally. If antiphospholipid antibodies are present, they prevent the blood from clotting, making it look as if there is a shortage of clotting factors, However, in reality the antibody acts as an inhibitor of the clotting test and in real life this is associated with an increased risk of clotting (this paradox is confusing to everyone). If you mix the serum part of the blood containing the antibodies with serum from a healthy person, the antiphospholipid antibodies still interfere with the clotting test, whereas if there Is a clotting factor deficiency (as in haemophilia), the mixing results in correction of the missing factor and the clotting test becomes normal. This is the basis for some special tests of blood clotting used to diagnose antiphospholipid syndrome.
In Lupus patients, the coagulation process goes out of control and blood clots form all over the body. Symptoms include blood clots in the veins or arteries in the leg, arm, kidney, liver, lung, brain, heart or other organs, recurrent miscarriages, and low platelet counts. These clots can cause strokes, repeated miscarriages, and even death.
In Huges’ Syndrome, treatment is easily obtained with anticoagulant drugs. There are two main types of anticoagulants: heparin and vitamin K antagonists (e.g., warfarin). The latter have longer-lasting effects, interfering in the liver's metabolism of vitamin K, to cause production of defective clotting factors.
In Lupus, the treatment is usually more involved. Since Lupus causes inflammation all over the body, the inflammation must be controlled as well as controlling the coagulation of the blood.
Anticoagulation therapy (often coumadin - AKA: Wafarin or Heparin) is prescribed for patients with “sticky blood” symptoms. Anticoagulation occurs when anticoagulant drugs are given to prevent thrombosis (blood clotting in a vein).
Inflammation of the wall of a vein or irritation of the vein's inner lining also can lead to blood-clot formation. This condition is known as thrombophlebitis or thrombosis. In deeper veins, this requires anticoagulants to prevent embolisms.
An embolism is an obstruction of blood flow by a substance, such as a blood clot, a fat globule from a crush injury, or a gas bubble. Obstruction of an artery to the brain may cause stroke.
Treatment with anticoagulant drug therapy as well as with anti-inflammatory drugs is important in controlling the symptoms of “sticky blood” in Lupus patients. If the symptoms are not controlled, then organs will be damaged, miscarriages occur, and strokes and death are more prevalent.
Treatment of clots may include aspirin and clopidogrel (oral antiplatelet agents), intravenous antiplatelet agents, heparin (a blood thinner and anticoagulant), and clot busters (thrombolytic agents). In addition to medications, special interventional catheters may be used to remove or compress these clots.
Your Mother's role in managing her blood clots should be to gain the necessary knowledge about her medication and the factors that affect it, and then apply this knowledge to her daily activities. In general, she should avoid any activity or sport that may result in a traumatic injury.
If she gets a cut or scratch, it may bleed longer than when she was not using an anticoagulant. Also, she may bruise easier, so she should try to be careful. Any time she is to have any type of procedure done that could place her at risk of bleeding, she should notify her healthcare provider. Depending on the procedure, the anticoagulant may need to be temporarily stopped, or she may need an alternative method of
Here is a list of "DO'S and DON'TS" while taking anticoagulant and for managing blood clots:
* strictly adhere to the dosage prescribed.
* Get her INR level monitored on a regular basis.
* Eat a normal, balanced diet maintaining a consistent amount of vitamin K.
* Let her healthcare provider know about any other medicines she is taking (prescription and over-the-counter) as well as any herbal/nutritional supplements.
* Monitor herself for any signs of bleeding.
* Tell anyone giving her medical or dental care that she is taking an anticoagulant.
* Wear a medic alert bracelet to identify herself as being on an anticoagulant and state the specific anticoagulant that she is using.
* Notify her healthcare provider immediately if she experiences any signs of bleeding or unusual symptoms.
* Don’t take a double dose of anticoagulant he following day if she misses a dose on the previous day. Notify her healthcare provider if she misses
* Don’t change her dosage without speaking to her healthcare provider.
* Don’t change, start, or stop any medications or nutritional supplements without speaking to her healthcare provider.
* Don’t make any drastic changes in her diet without speaking to her healthcare
* Don’t participate in any activity or sport that may cause a traumatic injury.
* Don’t drink excessive alcohol.
I hope that I've answered your questions. Please let me know if you need anything further.
Peace and Blessings
06-12-2008, 01:03 PM
Thank you for the information. I will talk to my mom about what you told me. This is an awful disease and you get desperate for answers. My mom is taking coumadin now and i talked to her today and she is doing better. I am so glad i found this forum and found people who understand. Thank you and God Bless You
06-15-2008, 09:41 AM
We are always here for you whenever you need us....
You are not alone and you are such a blessings to your mother!
Peace and Blessings
07-06-2008, 05:33 PM
One month later my mother is doing really well. Since they figured out her blood clot problem she no longer has the pain that has kept her unable to get out and do things. She was able to come to my house for the 4th of july and she was even able to go to church today. I'm finally able to see that little sparkle in her eye again. We found out after she got out of the hospital that she had blood clots in both lungs and from her groin to her ankle. We are very blessed to have her with us. :D
07-07-2008, 02:58 AM
Welcome to the site. I am glad that your mother is doing a lot better. I hope that her health continues to improve. You have come to the right place. There are a lot of us in here that have Lupus and some that are waiting for a confirmation of the illness. Everyone here is so nice and there are a lot of knowledgeable about this illness.
07-08-2008, 09:49 AM
That is such good news and, oh how I love to hear good news! I hope that things continue to improve for your mother, which will, in turn, make things a bit brighter for you!!
Peace and Blessings