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thebutterfly83
10-20-2010, 06:24 PM
Hello out there..
I dont usually post threads but i must ask this question because since my doctors have no idea maybe you guys can help me. okay so here goes :
9 years ago i was diagnosed with this illness called Lupus. From then up until now I've always had my usual labwork.My white count has always been low.. but the problem now is that now all of a sudden my doctor wants to be concerned about my low white blood cell count. From since i can remember before i was ill i never had a problem with it, so of course i am blaming it on my illness or my medication ( plaquenil). My rheum. is referring me to a hematologist for a possible consult for a bone marrow biopsy (ouch). We all know the usual cause for low white blood cell count is either a possible infection or a flare up and I've been great for the past 2 yrs ( thank god). Does anyone else suffer from a low white cell count?? I dont know what to think anymore.. I've been tested for everything, except this biopsy.

Scared and Fustrated,
Amanda

rob
10-20-2010, 07:01 PM
Hi Amanda,

I'm Rob, and I was diagnosed with SLE in 2004. There is an easy to understand article about low white-cell count as it relates to lupus at this site-

www.uklupus.co.uk/fact14.html (http://www.uklupus.co.uk/fact14.html)

The pertinent material is in the third paragraph down from the top. Personally, I know that my white count is consistently low, but my various rheumo's over the years have not been particularly concerned. Anyway, the article is a start. Let's see what others here have to say as well.

Rob

tgal
10-20-2010, 08:04 PM
Hey Rob,

I just read that article and I have a slightly different question. There are 2 tests that keep coming out bad however no one seems to have an explanation as to why. My Factor VIII and Factor IX tests are WAY too high. From what I have learned it means that my blood is getting too thick and my risk of venous thrombosis is higher. Over and over they have said they had no idea why it was like that but there was actually a part of that page you posted that spoke about this! Is it common for people with Lupus to have a VERY High Factor VIII and Factor IX test? Is blood thickening normal with SLE?

OK, I just went to look this up and I am AMAZED! Hughes Syndrome or APS! Look at this:

Hughes Syndrome (APS) is sometimes called 'sticky blood syndrome'. This is because people with it have an increased tendency to form clots in blood vessels (also known as thromboses). Any blood vessel can be affected including the veins and the arteries. Click here for a comprehensive snapshot.

The main symptoms of Hughes Syndrome can include any of the following:

Headache or migraine *Giddiness
Memory loss * Visual disturbance
Skin disorders *Thrombosis - DVTs
Heart attack * Stroke
Pulmonary embollism * Multiple Sclerosis-like features
Gastrointestinal disorders *Pregnancy problems

WOW! This is me!!!!!! Thanks for the link, Rob!

rob
10-21-2010, 08:50 AM
Tgal, you may be onto something. Let me look into the various factor tests again, and maybe I can help shed more light on this for you. I used to know all of the details and terms used in bloodwork like we have to have done, but I seem to have lost much of it down the brain fog hole.

BonusMom
10-28-2010, 10:17 PM
Hey Rob,

I just read that article and I have a slightly different question. There are 2 tests that keep coming out bad however no one seems to have an explanation as to why. My Factor VIII and Factor IX tests are WAY too high. From what I have learned it means that my blood is getting too thick and my risk of venous thrombosis is higher. Over and over they have said they had no idea why it was like that but there was actually a part of that page you posted that spoke about this! Is it common for people with Lupus to have a VERY High Factor VIII and Factor IX test? Is blood thickening normal with SLE?

OK, I just went to look this up and I am AMAZED! Hughes Syndrome or APS! Look at this:

Hughes Syndrome (APS) is sometimes called 'sticky blood syndrome'. This is because people with it have an increased tendency to form clots in blood vessels (also known as thromboses). Any blood vessel can be affected including the veins and the arteries. Click here for a comprehensive snapshot.

The main symptoms of Hughes Syndrome can include any of the following:

Headache or migraine *Giddiness
Memory loss * Visual disturbance
Skin disorders *Thrombosis - DVTs
Heart attack * Stroke
Pulmonary embollism * Multiple Sclerosis-like features
Gastrointestinal disorders *Pregnancy problems

WOW! This is me!!!!!! Thanks for the link, Rob!

Hey Tgal-

Do you routinely take 81 mg of aspirin daily? At my September rheumy appt. I took the labs from my April hospitalization with me because I knew she'd explain things so that I could understand them. The LA-PTT screening was elevated for the first time, combined with a low Anti-Thrombin III Function, which the rheumy said indicated thicker blood. Neither of these tests have come back abnormal in the past. The rheumy recommended that I take a therapeutic dose of aspirin for two reasons: 1. To prevent a possible stroke, and; 2. Perhaps reduce the frequency/intensity of the migraines that led to the April hospitalization.

I am not suggesting that you take medication without discussing with your doctor first, but it certainly may be worth a discussion as it is a very CHEAP medication and might offer you some help, especially if you suffer from thicker blood??????

Sarah2010
11-02-2010, 05:59 PM
Hi. I was in the hospital last week, and they did a bone marrow biopsy in me. My blood is a mystery, one day its fine, nxt day white and red count is down, and Im getting a transfusion. The biopsy was scary they did mine in my sternum last week, but it really wasnt that bad. I didnt want to get put asleep, so I did concious sedation and talked through the whole procedure..who knows what I was saying..lol but I was awake. I thnk having the marrow test is good, just because they can rule out cancer, and know that it is exactly JUST a nasty case of lupus their dealing with. GOOD LUCK!!!!!! XO
-Sarah