Does anyone have venous insufficiency, deep vein thrombosis? Is it part of autoimmune disease?

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cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 3/6/2009 11:43 AM (GMT -7)   
Hi--
I got my vein tests back on my legs and they told me I have DVT venous insufficiency in deep and shallow veins and I will have to have some laser surgery done, but have to be in really strong support hose for three months first.
 
They told me this is hereditary in my case, not from my back pinching any veins. Does anyone else have this? Is this something that goes along with autoimmune disease?  The PA couldn't tell me a doggone thing about it's causes, theyjust do the tests and surgeries. I definitely need the surgeries. I just wondered, since there is no treatment for the deep veins and prognosis isn't so great for a younger person, if maybe if it was part of the ai disease, maybe there is some *magic pill* I could take (ie prednisone) to help.
 
Thanks for any help you can give. I have these awful support hose on and they are so thick and tight my stiff hands can hardly get them on. They need to makea zip up pair!
 
Hope everyone is okay!
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


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 3/6/2009 4:16 PM (GMT -7)   

Hey Marji,

I don't have any answers for you.  but surely someone else will.  my mother had to wear these support hoses everytime she had to go to the hospital.  I will be glad to see what other people have to say about this topic.

Hester


Lupus diagnosed 1996, Fibromyalgia diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008, Stroke 11-4-08
 
******
aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 3/7/2009 9:22 AM (GMT -7)   
Marji, DVT is definitely found in Lupus. I have to be careful about getting this because of my blood clotting issues (APS).  I think one of the treatments would be to have you on a daily aspirin to keep your blood thinner and prevent clotting.  They might even check you for APS - antiphospholipid syndrome. If you have this, they will likely put you on Warfarin.  Clotting is the big concern with DVTs.
 
Keep us posted!
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 3/11/2009 1:10 PM (GMT -7)   
Thanks Ginny. I have to wear stockings which help when they are on, but then things feel twice as bad when they are off. They are like a tourniquet at the top practically, but were sized for me, they are tight, then fall down becausethey don't go high enough, I have long legs. Now my thighs are killing me and it feels like the problem is further up. I wonder if I will ever get this sorted out right. Any thoughts on better stocking s wopuld be great.

Thanks for the reply.
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


omega
Veteran Member


Date Joined Jan 2007
Total Posts : 607
   Posted 3/11/2009 1:29 PM (GMT -7)   
Yes. You should get this sorted out right away. I had two 2 DVTs (one on each leg) and the pain was from my bottom to the back of my thigh. The second clot was up to the thigh (the groin area) already (from ultrasound image). I am on warafin for life. As Ginny says, you may want to check if you have APS also. I have APS. If the DVT is treated, it should not be a problem. I wore those stockings also, but I hated it. It's tight. When you get those stockings, were you being measure (I mean your foot/feet)? They should measure your feet first before they prescribed you the stockings.
DX SLE 1988; APS (Antiphospholipid Syndrome) Pred 10mg, Verapmil 40 mg bd (for migraine headaches), Cellcept 1000 mg;Omerprazole 40 mg; Warfarin; Calcium + Vitamin D 1200mg, Folic Acid 5 mg; Iron; Simvastin; Oxycontine 10mg; pregablin 150mg


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 3/11/2009 8:06 PM (GMT -7)   
Hey Omega, thanks for the info on those stockings.  I only wore those inflatable ones when I was in the hospital getting my hyesterectomy. They were SO annoying!!! 
 
Marji, how did you get so lucky to have such long legs? Mine are stumps.
 
Hope you can find an alternative that works for you. Might have to home-make them!
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 3/12/2009 10:02 AM (GMT -7)   

I have such bad pain, but also have a big spot on my lower spine on my old gallium scan that is really lit up and look like some kind of lesion because it has edges. I hurt so bad now I don't care who does surgery on my back as long as they make it better. they say its a pinched nerve, I wonder if I have may-thurner because my left leg is so much worse than the right. May-Thurner is an condition where the iliac artery pressses on the vein underneath it causing the left leg to swell. There is a fix for that,real simple surgery to place the vein atop the artery and you are much better. It makes sense because all that is where the pinched nerves are and my pelvis is tilted and I have scoliosis there, so I imagine a bunch ofthings are out of place. I just can't get these docs to look at more than one thing. One deals with the nerve, another wth the back, another with veins. Any advice?

I'm pushing for back surgery now, and not just a little laser procedure, but someone getting in there becaue I think its worse than I thought.

I found out that the stockings I have are ambulatory stockings, I also have the compression ones, they did measure me. I put the ambulatory ones on when I lay down, I sleep so much now, don't feel like doing anything. They help and go all the way up and stay up, but I can tell they are not strong enough for the left leg.

The stockings help the pain, but did anyone notice after wearing them that the pain just moves up the thigh to where the stocking isn't?

My mom suggested a garter belt but the stockings are so strong, Idon't think they make a garter belt strong enough to withstand the pull. All I need is that snapping me or someone else. And gettnig those little hooks closed with stiff hands? I swear, we can put a man onthe moon...
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


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 3/14/2009 11:24 AM (GMT -7)   
I too had a clot, in my lung and would highly recommend you ask about blood thinners and being tested for aps. judy

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 3/16/2009 7:01 PM (GMT -7)   
Thanks MJLD. I will pursue this with the doc. I don't know if I've been tested, I think I have anticardiolipin abs, don't know if they are the same. I didn't see APS on there and they checked a ton of stuff. Maybe they missed it. I will ask next month at my appt. I think something pretty serious is going on with my left leg because the pain is so bad the only thing that stops it is a shot of dilaudid (I only had one in the ER). Strong lortabs or ultram don't touch it. I have gone on to aspirin, one baby aspirin per day. The docs here won't give me a regular lupus dx, despite the malar rash, constant high ana, and the presence of a bunch of odd antibodies, though in levels just under "positive", though they do exist. They dx me with sjogrens instead, and I have a constant problem with that dx because non-rheumies think it is just dry eyes. Oh, and then they do every other problem separately, so its like I have a ton of stuff wrong.

Fortunately, I am getting an MRI of eyes and brrain and neck and cat scan of all of that, so maybe they will be abe to tell if I've had past TIAs during my "migraines". I don't know if clots showed up on the dopplers, wouldn't they HAVE to treat them if they did? I would think they'd have to put me on something. Also, oddly, my blood is thick but my sed rate is normal, for once in my life. Now just the CRP is a little abnormal. So if the blood is thick, wouldnt the sed rate HAVE to be high? It doesn't make sense.
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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