Lupus Support Group

hi i am new to this grp and i have a question about some blood work i just had. i have lupus anticoagulant i have had seizures and have a hard time getting my inr regulated its high then low on and on. the other night i went to the er because i felt like i might have a seizure. the er doc was a jerk (i will be nice)

so they ran my inr and other tests. she came back said i was fine handed me my blood work and left. i just took all the paper work home to look over later and talk with my doc however it is the weekend and i have a question about my kidney GFR levels it says( >=60) BUN 21 S.CREA 0.91 on the paper it says under 60 is not good what does > before the 60 mean. on the paper it says levels below 60 suggest kidney disease i have a appt on wed with my doc i was just wondering if anyone can give me a heads up on what is going on thank you so much

Hi and welcome to the group. I can't answer your questions but i see a kidney doctor in the future for me. About your INR, do you regulate the amount of vitamin k your take in? Do you drink alcohol? Or been on a antibiotic? Just some thoughts.

Alison

Hi I am seeing a new rumie doc on wed. As far as my inr i do watch my meds I have had to change a few i keep up with my vit k intake and I dont drink. Thank you for asking about all that. I recently found out they have home testing INR kits. They are expensive and you need a prescription so i have started the process to get one. This will relieve a lot of stress for me being able to test my blood when i am not feeling right. Hopefully my new doc will be better than my last. I quit going to my old rumie doc he was useless. I had to have a seizure before anyone would beleive me that something was wrong with me. ER trips countless doc appt no help. The best thing my primary doc could do was send me to a shrink. i was so angry at first however i grew to love him. He helped me with meds that helped me deal with my illness he believed me. He helped me get on perm disibility. He was a major part of helping me deal with my lupus fibromyalgia depression etc. I am sooo sad to say he passed away 2 months ago while on vacation. i cried for 3 weeks i really loved him i have been seeing him for 10yrs. i just went through changing all my meds to my primary doc who i have been with for 25yrs and the only other doc i trust and this was not easy. Now i just found out she is quiting her pactice in one month because of family issues. So now i have to start all over with new docs. WOW i guess i had to vent. Lupus is so misunderstood it makes me so angry. I look ok on the outside so it must be in my head i must be exagerating etc etc. Well thank you for listening.

OK, lupus anticoagulant is part of Antiphospholipid Antibodies. The home INR isn't right for you. It won't test right for someone with LA. I have APS and have had 3 strokes. (My memory isn't that great, so sorry if repeating things)

Vent here any time. Some doctors just don't understand what we go through. I also think that LA can effect your INR just to be a pain. Maybe that is why you can't get your INR stable. (Just did a quick search and that is right) I would hate for you to think you at a good level and have actually be lower.

You might want to browse around this site: http://www.apsfa.org/

Alison

Post edited by: redhairali, at: 09/19/2009 10:12 PM

i give up...what is inr?

How long it takes your blood to clot. People with Antiphospholipid Antibodies have blood that clots easily. So, they have to take Coumadin to thin the blood. This is what caused my strokes.

Alison

Post edited by: redhairali, at: 09/19/2009 10:53 PM

Hi i am going to check out that website. I dont know about antiphospholpid antibodies. I had a seizure that is when they told me i had lupus anticoagulant. docs put me on coumadin and phenobarbital 7yrs ago and docs have not been much help since. What is antiphospholpid antibodies? Thank you for any help.

mary

Hi, welcome. I think it is negligence for physicians to prescribe psychoactive drugs for lupus patients with no CNS involvement, causing permanent changes of the chemical environment in the CNS in patients with no cognitive impairment, and create a chemical dependence that force the brain to dysfunction without. My lawyers friends call this aggravated assault in persons with diminished capacity. When this was done during WWII, it was called torture and war crimes. I wonder how the law enforcement agencies would deal with this when doctors submit intelligent patients with full cognition to chemical assaults!

I am glad you have found a new rheumatologist. It seems your other doctors are not looking after you. Life is always better when you receive adequate medical care for the illnesses you actually have.

Take care

Kiko

Are you saying that phenobarbital is a psychoactive drug?

Antibodies are proteins in the blood that the body produces to fight off foreign agents. Antibodies do this by creating an immunity against unfamiliar microorganisms.

What are autoantibodies?

Autoantibodies are antibodies that are directed against one's self.

What are antiphospholipid antibodies?

Antiphospholipid antibodies interfere with the normal function of blood vessels. They typically cause two kinds of problems:

* narrowing and irregularity of the blood vessels (vasculopathy)

* blood clots in the blood vessel (thrombosis).

These antibodies react with proteins in the blood that are bound to phospholipid, a type of fat molecule that is part of the normal cell membrane. These blood vessel problems can then lead to complications such as stroke, heart attack, and miscarriage.

There are several kinds of antiphospholipid antibodies. The two most commonly measured kinds are:

* lupus anticoagulant

* anticardiolipin antibody

Lupus anticoagulant and anticardiolipin antibody are closely related, but are not the same antibody. This means that a person can have one and not the other. For example, in various studies, 8 percent to 65 percent of people with lupus have the lupus anticoagulant, and 25 percent to 61 percent have anticardiolipin antibody. These antibodies can also be found in people who do not have lupus.

Found this at lupus,org. http://www.lupus.org/webmodules/webarticlesnet/templates/ new_aboutaffects.aspx?articleid=82&zoneid=17

But of you google for "lupus anticoagulant and INR" you can see that they recommend a blood draw. But some Coumidan clinics won't do it.

Alison

Post edited by: redhairali, at: 09/19/2009 11:37 PM