DVT -Deep Vein Thrombosis

Been trying for the last 5 years to keep the count up and then "DVT". One doc got me on anti-coag's to prevent futher clotting and my Hemo Doc just upped my Prednisone dosage to boost the platelet count. I recently stopped the N-Plate, and just finished the 4-week Rituxan regimen with high expectations. Anyone had similar DVT experiences?
Hairball01

Hairball:

Does your doctor think the DVT was due to NPlate?

Another possibility is APS. Supposedly, 40% of people with ITP also have antibodies that can cause clots. Do you know if you've been tested for that? I have had the antibodies off and on for years, but have not yet had a clot.

I've had DVT's and PE's with APS, ITP and lupus. I required anticoagulation, regardless of platelet count. I clotted with only 14k platelets, due to APS. If they do not know why you clotted, I would suggest more testing, but even with testing, that does not mean you'll get a positive APS autoantibody. I clotted 2 times before a third clot and finally getting a positive APS test. I was put on anticoagulation twice previous, but since I had such low counts they figured I'd be protected from another clot if I didn't treat the low counts. Ha...clotted at 14k. you'll probably need anticoagulation if it's APS and you should be tested more than once, if you don't test positive.

If it's from high counts with NPlate, not sure what they do about that, except take you off NPlate, or manage the counts better.

Did the clot completely dissolve?

N-Plate came up in the discussion as a possible cause, but I've been very active remodeling a house and I sometimes tend to abuse myself in the process. But I will investigate the APS option.

APS has never come up in any coversations......yet, but I will persue the concept. As the clot was diagnosed 7 days ago, it's to early to tell. The earlier 14 week N-Plate regimen produced wild unpredictable results, once with a 200k jump within a week. I did have an episode of periferal thrombosis-left foreare, 3 months ago and during that time I was on N-Plate. There are just no 'black-and-white' answers on these problems..........

No, but further testing might reveal what is going on. Let us know.

Family Doc confirmed clotting related to APS. Something possibly acquired as a result of the autoimmune problem. Hemo Doc sez it is not related to the N-Plate regimen.Currently (and possibly forever) I will be on Coumadan. I will be seeing both Docs on Mon 3/15... wait for the results...........thanx.

APS can be fairly common with ITP. I've read that 33% - 40% of people with ITP also have APS. Sorry to hear that. I also have had the antibodies on and off but have not had a clot.

Sorry to hear you're APS positive and experienced a clot. Sometimes APS patients do get of anticoagulation. If the antibodies are negative, they may consider discontinuation. You'll have to weigh the risks and decide. It's not an easy decision and some doctors would rather leave you on aticoagulation once you clot, but some would like to see if you can get off.

I also have APS and have had several blood clotting events. I'm in remission, with negative APS for almost 3 years. I had a stem cell transplant for my autoimmune disease. I have lupus, with ITP and APS and autoimmune Anemia. I was clotting and bleeding at the same time, on anticoagulation with platelets that would not go above 30k. Currently I'm at 148, which is a recent drop from 250, so I'm a little anxious about the drop, although I realize it's still normal, so keeping a positive perspective.

I decided to go off anticoagulation, which was suggested by 2 doctors, so here I am 2 years off and so far no clotting and still negative APS. They will probably keep you on anticoagulation for at least a year, possibly 2 and if you don't reclot, they may suggest you discontinue, but not if you're still APS positive.

Plaquenil, which is a lupus drug is suggested for APS patients as it seems to have an effect on managing clotting, so you may want to talk to your doctor about plaquenil. I know I clotted when I stopped plaquenil and it also really helps my joint pain and fatigue form lupus, with no effect on my platelet count.

Good luck to you...keep us posted.

Kim, Thanks for the tip on Plaquenil, I will ask my Docs about it. As mentioned earlier I will see them both on 3/15. Also I did not consider a future retest for APS. You mentioned you experience several clotting episodes. Where did your clots occur. I had two before the APS diagnosis. One in the left forearm and 4 months later a DVT in the right calf. The DVT event triggered the testing for APS to confirm the cause. Both events were painful due to the swelling.
Details at Eleven....................

I had an arm, then PE's, then another arm, then a DVT in right leg, with multiple PE's in both lungs. That DVT was pretty extensive, it extended from the Iliac, common and deep femoral all the way down the posterior tibeal (calf). It never disolved, so it's a chronic clot and I have problems with it swelling and it often gets infected. The repeated PE's have caused pulmonary hypertension and scaring in lower lungs. I've also had 2 mild strokes, which I never knew I had, except that I had massive headache that lasted 2 days once and I never went to the ER, so that might be when I had the stroke. I never had any symptoms besides the headache and Iv'e had headaches before and after, which after finding out I had a stroke, I don't question to much anymore and go to the ER when My headache is bad and I'm worried. All but the last one, the DVT that was extensive with the multiple bilateral PE's were negative APS. I was tested with each clot, but negative until the major clotting event. I remember not even asking, because I assumed it would be negative. I found out several months later when I ordered the copies of my medical records and there it was - Positive. By then I was also having vasculitis and constant migraines, so I pursued stem cell transplant for autoimmune disease.

Have you had any post thrombotic syndrome? Such as swelling, redness or pain? My right leg is completely discolored (brown) the skin is hardened and really ugly. It swells and I have to elevate it to relieve the swelling and pain. It's a unpleasant complication of DVT. I hope your clot resolved and you don't have this problem. I have the problem in both legs, but the right leg is really bad. My left leg is easy to manage and it's no as discolored at the right. I hate the way my legs look - Very ugly. I have to wear support hose all the time, which is such a drag in the summer. No more cute sandals for me, but I do cheat sometimes.

Kim, Not sure what's going on. Platelet count sometimes dropped 200k in a few days. Been changing the Prednisone dosage almost weekly. Did sorta confirm the DVT was not associted with the low platelet count or vis/versa. However I am now committed to Coumadin until further notice. The 5mg dosage has kept the INR around 2.5. However I might open a new Chat topic on 'Rituxan Retreatment'. Look for it...................

Hey Hairball - here is a good discussion about APS from the old board:

discuss.pdsa.org/topic.asp?TOPIC_ID=13995

Got it..... thanx.
Re; DVT, sorta determined the low platlet count and the N-Plate were not related to the DVT event. At that time no one was sure what was happening except the technician doing the untrasound on my right leg. Family Doc didn't get APS confirmation until a few days later. We were treating the problem before we had a name for it. We elected to stay on generic Coumadin until further notice. At this point in time, I'm waiting for my 2nd round of Rituxan (1st round in '08) to kick in.

The treatment for blood clots is generally all the same, regardless of what caused the clot. The goal is to stop further clotting, so you body can dissolve the clot. The blood thinners do not dissolve blood clots, they just keep it from growing.

Good luck with the rituxam treatments. I don't think they are used for APS, but I could be wrong. Although, they are used for ITP, but didn't do much for my APS or ITP. I did get a more stable platelet count, but I still couldn't get above 30-50k without additional treatments. I was also on cellcept and prednisone. Cellcept dose at the time was 1000mg and prednisone was 30mg. I had the rituxan initially prior to my APS diagnosis and round 1 was prior to blood clotting events. I started clotting after round 1 and continued to clot after round 2 and 3, so it didn't stop me from developing my first clot, nor did it stop me from developing subsequent clotting events. But, my ITP, lupus and APS were pretty aggressive. I eventually ended up on 3000mg of cellcept, 30mg of prednisone and still could not sustain counts above 30k. Which led me to the stem cell transplant for autoimmune disease.