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

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!

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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}

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

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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

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.

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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

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...

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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}

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.

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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}