[mumsy613]

Hi
Have not been here for a while, but I have a few questions about labs.

1. Does anyone know if SLE can cause DVT's in spite of testing negative (repeatedly) for Antiphospholipid Ab and DRVVT? I have no other risk factors either by history or labs.

2. Does it mean anything that after 10 yrs of ANA testing, the pattern suddenly shifts from homogenous to nucleolar (repeatable)?

3. I have never had an elevated dsdna, but new testing of antichromatin ab is strongly positive. Why does the doc still persistently test for dsdna? I thought dsdna was a subset of antichromatin?

4. I am on coumadin (almost 5 months now), and still cannot get into a stable therapeutic range. My diet has become totally boring attempting to not rock the Vit K boat. When it it does become stable for a couple of weeks, I start to have nose bleeds and headaches on top of the persistant bruises and bleeding under the skin. Anyone have any ideas on how to get the darn thing to stabilize?

Thanks so much for the brain power!

Fran

 

[erenae1974]

Hi,
Sorry to hear about your frustrations and I don't know the answer to any of your questions, just thought I would tell you how it works for me. I have been on coumadin for 3 years and it goes up & down. If I get sick it goes up (because of an empty stomach) and sometimes it goes down a little when I get on a salad or brocolli kick! My dr. told me that you need to live your life & eat what you normally would & we'll adjust the medication around that, don't adjust what you eat around the med. It usually is pretty stable now, but it took a couple of years to get the dosing just right. I still go in once a month for an inr check, but up till about a year ago I was going in every week or every 2 weeks & then adjusting so I know how frustrating it can be! Hang in there! I get persistant headaches too, but not nose bleeds. I don't know if the headaches are more from the lupus though. I also bruise easily being on the coumadin. Sorry I couldn't offer more help but I'm sure someone will come along & have some more thoughts for you!! Take care,
Erin

 

[Maia]

I'll do my best:

(1) DVT can happen to perfectly healthy people too, after periods of inactivity. Since SLE can cause us to not move very much, I can see how this could contribute to developing DVTs. I'm not sure if there is any proven physiological reason for it though explicitly due to SLE other than that.

(2) Probably not much significance, especially in the absence of a change in symptoms that might suggest possibly developing another disease in which the nucleolar pattern is more common. Few doctors continue to test ANA after diagnosis since it's of little use though - so probably not much data to back up any statement on patterns of ANA changing over time having significance or not.

(3) Not sure why they keep testing for DsDNA antibodies. My doctors only have done that retesting when I've had a change in symptoms and it's not done as a matter of routine. If you're seen at the Mayo Clinic or a major research center I wonder if sometimes more things are run to have for those purposes sometimes. Anti-chromatin antibodies are thought to appear before ds-DNA antibodies, but that's not known for sure yet to be true. Chromatin antibodies are also known as anti-nucleosome antibodies so I wonder if that has something to do with the pattern change on the ANA?

(4) I have no idea on that one. There recently has been research/talk about a blood test they can run on you though to check and see if you are likely to have "trouble" with warfarin/Coumadin. I think I posted on it a while back so I can try to find that link for you. It would probably be in the Medications forum...

Good luck!

 

[mumsy613]

Thank you both so much for the info. I am a bit nervous about the nucleolar pattern since the skin on my lower legs is turning to leather, and my pulmonologist just freaks out when my test for resistive disease (lupus pneumonitis/ILD) comes out positive. Fear of fibrosis. Then everyone wants to jump on the steroid, chemo bandwagon which I am afraid I resist. Seems to me that having two remissions with Rituxan, and PML ruled out by LP.....well what is more risky?

Your comment about having research doctors is right on the money. I feel like a lab rat! Sorry....I am ranting again.

Thanks again, Fran

 

[Clare.T]

Hello Fran

I am really sorry for all you are going through - many hugs

People can have APS type events such as DVTs without the usual supporting blood work or so I have read although I have no idea how they tell what's causing it. I should have thought there are other reasons for DVT's than APS because surely not everybody who has DVT's has APS.

I should think your doctor tests for both anti chromatin and anti dsDNA out of interest as much as anything else. You are the only person who has mentioned this test - googling anti chromatin yesterday your two posts here come 5th and 6th on the lists. It clearly isn't standard testing, but it is mentioned as being more frequent and more reliable than anti ds DNA. Apart from doing wide scale studies it's the doctors' understandings in their own practice adds to the collective understandings. Why not ask him.

Is your doctor approachable and could he give you a better idea of what might be going on re the scleroderma aspect ?
I suggest you ask separately about the unstable INR to get the opinion of the experts here, or ask on one of the APS forums.

All the best
Clare

 

[mumsy613]

Hi Clare

Good to hear from you. Thanks.

The reason I asked about the DVT / PE thing is that during the hospital stay and two weeks after, I gave the labs over a full pint of blood.

They tested for the obvious autoimmune, plus genetic tests, all the clotting factors, accounted for family history and lifestyle. The only risk factor the tests produced was blood type A, which is pretty thin.

I had cancer tests, brain mri and ct scans, full body scans, sent to a hepatologist for a consult. Add in angiography, around six ct scans in all, mammogram, breast ultrasound, and mri. The last mri ordered was not done since my kidney function had dipped too low....thanks to all the contrast media. I have a three inch stack of reports, a platinum vena cava filter, lungs showered in blood clots, and no answers.

So.....I thought someone might know about a lupus connection (other than APS)....something else to test for....tee hee. Just a shot in the dark

Hope you are feeling well these days. Thanks for the info.

Fran

 

[cemc]

Coumadin levels erratic

My mother has the same problem with really erratic levels. We have a family history of coeliac disease, which definitely causes malabsorption problems. I know before I was diagnosed, I used to tell my doctor that it was useless giving me tablets orally as I never seemed to absorb them properly! That all changed with the diagnosis of coeliac disease and going on a gluten free diet. I now have no malabsorption problems.

In my mums case she accepts that she probably has a problem with gluten and eats a low gluten diet, but she is unwilling to have the coeliac screen and her low gluten diet obviously isn't enough to stop the malabsorption problems.

I'd suggest if there is any hint of malabsorption then you do have a coeliac screen. Its just blood tests to start with, then if they are positive you might be required to have an endoscopy and jejunal biopsy to confirm. You have to have this in the UK in order to get prescribable gluten free food. Coeliac is another autoimmune disorder that seems to go in families with RA, lupus, etc.

 

[mumsy613]

That's interesting. I don't know anything about symptoms of celiac disease, but some carbs do not agree with me....apples, pears, potatoes, waffles and pancakes. Love them all, but rarely eat them because of abdominal swelling. Thanks for the idea. I am seeing my internist in the morning and will ask what she thinks.

Thanks, Fran