Anticardiolipin/antiphospholid flaring? Thick blood.

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cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 3/23/2009 10:08 PM (GMT -7)   
Hi--
I am in the last two weeks of my isoniazid tx for "latent" TB and I have some problems, my liver is taking a beating now. usually this will cause my platelets to drop and myblood to be thin. Instead, my blood is really thick and I'm dizzy nearly all the time. I smell burning rubber off and on and people tell me that that is a sign of a clot/stroke. I am wearing anti embolism/compression stockings and Ima real mess.
 
So maybethis is a flare and I'm having that antiphospholipd thing. I had anticardiolipid antibodies but just barely high years ago, just a few points over high normal. Are anticardiolipid thesame as antiphospholipid?  How bad should I let it get? I have started taking a baby aspirin a day, which helps with the dizziness. I have a rheumie appt april 4th and am trying to wait. Also, maybe it will go away after I finish the meds. The funny thing isthat I am having no migraines (though I had them a few months ago).  Myeyes kinda go crosseyed for a few seconds every now and then but the dizziness is the only thing really bothering me, and still that nagging pain the hip I've had for months now. 
 
Any ideas? Does this sound like what happens to you?  I hate the dizziness and last time I went to primary care, they clled it vertigo and I couldn't take the meds for it and they didn't work anyway. I wonder how much brain damage Im' supposed to get before they figure it out. I'm so tired and about brain dead.
 
I miss you all and feel like I haven't been as good as normal at things but please know I care and pray for us all and I hope that everyone is okay. I'm just really messed up now.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 3/24/2009 7:04 AM (GMT -7)   
Hi Marji,
 
I know antiphospholipid syndrome all too well.  You definitely have to see your pcp or rheumy asap. Have you had your INR/PT tested to see just how thick your blood is?  When my blood gets too thick, I get the dizziness and a lethargic feeling.  I can just tell that my blood is stodgy so to speak.
 
The burning rubber smell you get is a concern for me....After I had my stroke (due to the APS), I was left with simple partial seizures that affected the area of my brain that the stroke happened in.  Part of my seizures were an electrical burning or burning rubber smell. That happenend at the very beginning of my seizures.
 
Anti cardiolipin antibodies are different than the APS.  But they also mean your blood is thick. You need to see a doctor, any doctor right away. Don't wait. I was taking baby aspirin to control my APS, and I ended up having a stroke. It wasn't enough to thin my blood. I'm on life long Warfarin now.
 
So yes, this is exactly what I experience with my APS.  You have the classic symptoms of it. Please call your doctor and get all the testing done right away. Keep us posted okay.  We love you too and I'm so sorry you're dealing with all this.  It's scary, frustrating and it makes you sad, right?  Email me personally if you need to talk about anything okay?  I have a lot of experience with APS.  I'll do what I can to help you out.
 
Love you Marji,
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Co-Moderator for the Lupus and Fibromyalgia forums


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 3/24/2009 9:56 AM (GMT -7)   
Run, don't walk to a doctor asap! This is deadly serious stuff and cannot wait! Keep us posted on your outcome. God bless you Judy

aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 3/24/2009 3:26 PM (GMT -7)   

Hey Margi....please go to the doc ASAP! I am worried about you and praying for you! Please don't let it get any worse! keep us updated!

Hugs


Amy

 

21 years old...Systemic Lupus 11/07, lupus nephritis 01/09, raynoids 03/08, Carpal Tunnel 03/08

Ultram, Prednisone, Cell-Cept, Lisinopril, Imuran, Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Chantex, Aspirin 81 mg, Vitamin C


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 3/24/2009 4:28 PM (GMT -7)   
Marji, how are you doing today?  We're really anxious to know how you are. Post when you can, okay.
 
Love
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Co-Moderator for the Lupus and Fibromyalgia forums


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 3/25/2009 7:56 AM (GMT -7)   
I'm sorry, my boyfriend left me and I'm in debt, my son is with me now. I had to go to the eye doc yesterday I couldn't see, bad pain. He says I have a sty in my eye socket. I think it burst because I feel better today.

I will stop by the primary care docs office. I've been drinknig gatorade. If she can't see me it looks like the ER. I'm so so dry in the eyes I can't even cry or produce a tear. The gatorade is helping too. I will go. This has happened alot befoe, but never this bad. usually just the smell, tired and sjogrens a little worse, not like this. I think it is front the isoniazid killing my liver for the last three months. I'm done after next week. I want toquit early but they say I can't. I need bloodwork,you are right.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 3/25/2009 6:41 PM (GMT -7)   
Hi Marji:

Sounds like a lot is going on right now for you. I hope that you've been seen by now and you've been given answer about your blood. I'm sorry about your boyfriend and the debt thing. I'm glad to hear your son is with you. You hang in there, know that we're behind you and pulling for you. Take care of yourself an let us know how you're doing soon.

Hugs,
Barb
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 3/26/2009 5:23 PM (GMT -7)   
Howdy Marji!!! Did you get in to see your doc or go to the ER? Just thinkin about you and sending prayers your way.

Love ya

Amy

 

21 years old...Systemic Lupus 11/07, lupus nephritis 01/09, raynoids 03/08, Carpal Tunnel 03/08

Ultram, Prednisone, Cell-Cept, Lisinopril, Imuran, Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Chantex, Aspirin 81 mg, Vitamin C


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 3/26/2009 7:03 PM (GMT -7)   
I didn't get there do to car trouble but am going tomorrow. My son threw up so hard he burst blood vessels all over his face so he is going too. I have to drive myself. I tried to get a hold of rheumie and get my blood test change but have a wait and tried to get in with my pc doc but they couldn't see me. They said if I felt bad enough I could go to the er. So I guess thats where we are going.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids

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