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Old 10-29-2011, 09:23 PM
 
22 posts, read 664,667 times
Reputation: 89

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Long story semi-short (but it's a long post - sorry): I had some vein issues in one leg that over time, caused a large visible vein, discolored area, and some bleeding with thin veins near my ankle. I decided to get the "VNUS" procedure on that leg to at least help clear things up, but right before I did it, my other leg (right) swelled up just above the knee area just like the other one did a couple of years earlier. I figured it was about to go bad too, so had to go get an ultrasound before starting procedure # 1 on the first leg.

Well, turns out during the ultrasound, they found two blood clots in the right leg that just swelled. The doctor said that they were both superficial clots, but both were "very close" to main arteries, and they were very concerned that these if left untreated could turn into more dangerous DVT type clots. While she was polite about it, she stressed there was "no other option" than for me to immediately begin using an injectable blood thinner called Arixtra. Pill thinners take up to a week to start working and the injectable kind work instantly and she said I HAD to start thinning the blood right now. So (without insurance), I had to opt for this route. This is a very busy vein place and they don't spend a ton of time with each patient, and admittedly, I was blindsided by too much info when this hit. Her theory was that I would inject the thinners for two weeks, get another ultrasound, and "see where the clots stand at that point to see where we need to go from there".

I'm a bit concerned as Arixtra is not only VERY expensive, but from my research, really doesn't do anything to dissolve existing clots. It seems to just prevent new ones from forming, so I'm not sure what she expects to see the two existing clots to have done in two weeks on this stuff. She said they want to keep me from having to go on pills like coumadin, but I don't see how I can avoid that (?) given the circumstances - unless your body can just dissolve these things on it's own. I was taking low dose aspirin for two years before this latest event happened - so obviously that did no good to prevent it.

I'm creating my list of questions for this doctor for my next visit later in the week, but really all I'm looking for are similar stories from folks in here who may have gone through similar things so I can know what I might possibly expect down the road. Clots that were not quite DVT, but close, and find out what your own doctors did for you regarding treatments, the outcome, etc. Your shared experiences would be helpful. Thank you.
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Old 10-30-2011, 10:11 AM
 
Location: Georgia, USA
25,136 posts, read 30,034,331 times
Reputation: 31239
Quote:
Originally Posted by stockphotoshooter View Post
Long story semi-short (but it's a long post - sorry): I had some vein issues in one leg that over time, caused a large visible vein, discolored area, and some bleeding with thin veins near my ankle. I decided to get the "VNUS" procedure on that leg to at least help clear things up, but right before I did it, my other leg (right) swelled up just above the knee area just like the other one did a couple of years earlier. I figured it was about to go bad too, so had to go get an ultrasound before starting procedure # 1 on the first leg.

Well, turns out during the ultrasound, they found two blood clots in the right leg that just swelled. The doctor said that they were both superficial clots, but both were "very close" to main arteries, and they were very concerned that these if left untreated could turn into more dangerous DVT type clots. While she was polite about it, she stressed there was "no other option" than for me to immediately begin using an injectable blood thinner called Arixtra. Pill thinners take up to a week to start working and the injectable kind work instantly and she said I HAD to start thinning the blood right now. So (without insurance), I had to opt for this route. This is a very busy vein place and they don't spend a ton of time with each patient, and admittedly, I was blindsided by too much info when this hit. Her theory was that I would inject the thinners for two weeks, get another ultrasound, and "see where the clots stand at that point to see where we need to go from there".

I'm a bit concerned as Arixtra is not only VERY expensive, but from my research, really doesn't do anything to dissolve existing clots. It seems to just prevent new ones from forming, so I'm not sure what she expects to see the two existing clots to have done in two weeks on this stuff. She said they want to keep me from having to go on pills like coumadin, but I don't see how I can avoid that (?) given the circumstances - unless your body can just dissolve these things on it's own. I was taking low dose aspirin for two years before this latest event happened - so obviously that did no good to prevent it.

I'm creating my list of questions for this doctor for my next visit later in the week, but really all I'm looking for are similar stories from folks in here who may have gone through similar things so I can know what I might possibly expect down the road. Clots that were not quite DVT, but close, and find out what your own doctors did for you regarding treatments, the outcome, etc. Your shared experiences would be helpful. Thank you.
I have not personally enjoyed the experience of phlebitis but here is what I have gleaned with the aid of google.

Aspirin is not effective for preventing venous clots. It does work for arterial clots, so keep taking it if that is what your doctor recommends for you.

The clots that already present will gradually be absorbed and go away, just the way a skin bruise does. Since they are superficial, they are not dangerous. The goal of treatment is to keep them from growing longer and extending into the larger veins. the bigger clots in deep veins can break off and travel to the lungs. These are called pulmonary emboli and are potentially fatal.

The only way to know whether there is also deep vein thrombosis is to look for it. You had that done, and apparently you do not have it, which is good.

Then the issue is treatment.

Medscape: Medscape Access

Were you told to take an anti-inflammatory medication like ibuprofen? It may help with the pain and swelling. It also has an anticoagulant effect.

For minimal superficial phlebitis below the knee, all that may be needed is ibuprofen, heat to the painful area, walking, and compression. More about that later.

The big issue is the injectable anticoagulant. It appears to be indicated if there is significant concern about the situation progressing to the deep veins, and that appears to be a concern in your case, where the involved veins are above the knee.

Then the question is which injectable.

For people who have deep vein clots or who have had pulmonary emboli (lung clots), the usual course is to start with injected ant-coagulant and then switch to pills (warfarin = Coumadin.) This is because the shots work faster and there is actually a slightly increased risk of clots in the first few days the pills are taken.

The prescribing info for Arixtra lists its indications being for deep vein thrombosis and pulmonary embolism, combined with warfarin. It is also used for prevention of clots with some types of surgery that increase the risk. I do not see it recommended for superficial phlebitis.

There are older products similar to Arixtra that may be less expensive. The newer "low molecular weight heparins" are favored because the effects on blood thinning are easier to monitor than the original heparin.

I would suggest that you ask your doctor whether you need to be switched to Coumadin and, if so, how long you need to take it. If you previously had phlebitis in the other leg, you may be looking at long term use.

You also need to ask your doctor about testing for underlying problems that make it easier for your blood to clot. If you have one of those, then long term anticoagulation might be a good idea.

I mentioned compression. This really does help, though you will probably need thigh high prescription hose. They are a pain in the neck to use, but they do work.

Whatever you do, do not just stop the Arixtra without talking to your doctor!

And ask your pharmacist if there are any coupons or patient assistance programs for the Arixtra.

To summarize:

Continue the Arixtra until you are told to stop it.

Ask your doctor about

~ whether to take ibuprofen or another anti-inflammatory.
~ testing to find out why you are susceptible to clots.
~ whether you need to continue the Arixtra. Is there something cheaper?
~ whether you should be switched over to Coumadin, and if so for how long.
~ whether you should be wearing compression hose.
~ whether you are still a candidate for the VNUS procedure you planned to have.

I hope all goes well and you are better soon. Hopefully you will not need to be on the blood thinners long term.
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Old 10-30-2011, 01:59 PM
 
22 posts, read 664,667 times
Reputation: 89
Quote:
Originally Posted by suzy_q2010 View Post
Ask your doctor about

~ whether to take ibuprofen or another anti-inflammatory.
~ testing to find out why you are susceptible to clots.
~ whether you need to continue the Arixtra. Is there something cheaper?
~ whether you should be switched over to Coumadin, and if so for how long.
~ whether you should be wearing compression hose.
~ whether you are still a candidate for the VNUS procedure you planned to have.

I hope all goes well and you are better soon. Hopefully you will not need to be on the blood thinners long term.
Thanks for your reply. To address some of what you mention in your posting.....

I was told you can't take ibuprofen, Aleve, etc while on most blood thinners, including Arixtra. They told me not to even take aspirin while I'm on it. I usually take fish oil daily as a supplement, but online I even found where taking fish oil isn't recommended while on these shots.

I am using compression stockings on both legs. I've been following the doctor's recommendations on those to a "t", wearing them from sun up to sun down (I was told I didn't have to wear them when asleep so long as I keep legs elevated, which I do). Luckily cooler weather is settling in - I'd never be able to wear these things in the hot summer months (I don't know how women do this!?!).

Coumadin I was told is what they're supposedly trying to AVOID putting me on due to long term side effects, and the fact you have to get frequent and regular blood tests for monitoring while on it. While the pills are cheap, weekly or even biweekly blood tests do add up when you don't have insurance. This will be one of the things I go over with her.

Just thinking on my own, I'm now wondering if I'll be disqualified for that VNUS procedure to ever be done. If it turns out I'm prone to clots, then common sense tells me that "shutting down" a vein in that procedure wouldn't be the wisest thing to do, as a clot in the remaining veins would make it worse then. yippie for me.


That's why I'm hoping as the topic progresses there might be some folks with very similar experiences who see it, as I'm curious what the longer-term treatment(s) were/are for them. Each case is different I realize, but it's just helpful to hear other experiences too.
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Old 10-30-2011, 06:00 PM
 
5,300 posts, read 11,482,649 times
Reputation: 12995
DO NOT under any circumstances take ibuprofen or other NSAID's while on an anticoagulant without express permission from your MD.

Treatment via Google can be hazardous to your health.
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Old 10-30-2011, 08:12 PM
 
22 posts, read 664,667 times
Reputation: 89
Quote:
Originally Posted by bluedevilz View Post
DO NOT under any circumstances take ibuprofen or other NSAID's while on an anticoagulant without express permission from your MD.

Treatment via Google can be hazardous to your health.
I would never do that.

My first line of learning is of course as busy as they are, through the doctor. I did look up some basics about the drug they put me on via the drug maker's web site and other reputable sites like webmd, but even then, I only used the drug maker's site as the more precise way of knowing what to avoid or not on it. I think your google remark was made toward someone else, but their input is appreciated - and I know not to just take suggestions from folks simply based on search engine results. I do appreciate any input though. As I had said, my main goal is to simply find folks who may have gone through what I am currently going through, and to simply hear what their own doctors did in the way of treating it, etc.

It's pretty cut-and-dry when you look up Arixtra online as far as them saying not to take ibuprofin, Aleve, Aspirin, etc. So I haven't. The fish oil thing is iffy - some sites say it's ok, some say no, and the maker's site doesn't really mention it. Most all say to avoid things with vitamin K in them as it acts like a clotter, (Broccoli, Spinach, etc), so of course, some of the things I like to eat most... now I can't.

You know what terrifies me more than anything right now? And it's dumb: If I have to go on Coumadin or a similar drug that requires frequent blood tests to monitor them. I literally have panic attacks if someone tries to draw blood from my arm. I know people who have been on these before and they say there are finger-prick tests for stuff like this, but the hospital/clinic I use say they only do arm draws for blood tests. The fear is based on a past history where I had to have that done and it was a very painful experience for a period of time. The blood tests terrify me more than the clots, I think!

I'd love to hear just one story of someone who says, "The exact same thing happened to me, and one month later, poof, the clots magically disappeared and I lived happily ever after". Somehow I don't think I'm going to see a comment like that, though.
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Old 10-30-2011, 11:54 PM
 
Location: Georgia, USA
25,136 posts, read 30,034,331 times
Reputation: 31239
Bluedevilz is right, of course. The NSAID option was an alternative option, not a combination with the injectable. I did not make that clear.

Here is an article in support of Arixtra for superficial phlebitis:

Fondaparinux for the treatment of superficial-v... [N Engl J Med. 2010] - PubMed - NCBI

"Fondaparinux at a dose of 2.5 mg once a day for 45 days was effective in the treatment of patients with acute, symptomatic superficial-vein thrombosis of the legs and did not have serious side effects"
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Old 10-31-2011, 12:11 AM
 
Location: Georgia, USA
25,136 posts, read 30,034,331 times
Reputation: 31239
Your doctor may not be using the fingerstick method because of reimbursement issues.

Could you ask to go to a lab at a hospital that treats kids? They may do it with a finger sample.
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Old 11-03-2011, 09:15 PM
 
22 posts, read 664,667 times
Reputation: 89
UPDATE 11/3/11:

Ok, I went in today for my second ultrasound after having been on those Arixtra shots for two weeks. This is why I get frustrated with doctors, too...

They did a second ultrasound on just the one leg this time. They said that one clot had dissolved on it's own (good news) but the one that was near the main vein was still there, but it had at least, "retracted" slightly (.5cm) further away from that vein as it was a week earlier. The "nurse practitioner" told me that after consulting with the doctor in-between the 110 patients they were seeing that day, that they concluded that they were going to take me off of the Arixtra shots after I run out later in the week, and switch me to Plavix. I thought Plavix was for heart issues (at least that's the way they advertise it), but she said they are also now using it for leg/vein clotting issues as well. She and apparently the doctor seem to think it will help on the recovery of this issue. At $200 per bottle with no insurance, I'm starting the process again to see if I qualify for discounts from the drug maker.

Here's what's frustrating and as someone who until now never really had to see a doctor, maybe you all can tell me if this sounds normal for what I'm being charged so far:

1st office visit: Included consultation, ultrasound on both legs, and diagnosis, and I was charged $349.00 "self-pay", and I paid in full via credit card. I was told to come back in two weeks so they could see how the shots I was prescribed worked. I did not qualify for assistance on the shots as I just barely made outside of the drug maker's guidelines for it. Cost of shots for 2 weeks (around $1,600.00).

2nd followup visit: They re-did the ultrasound on one leg (one with the clots), and briefly consulted with me the results, and prescribed the new drug. I was charged $380.00 for this followup visit (??), and the gal at the payment area insisted this was normal and that I had received a discount on my 1st visit since it was my first time there. (I've always been under the impression that followup visits should be LESS than the first?).

I was then told I have to go back again in 10 days for yet another "status" visit to see how things have progressed. I'm sure they're going to do yet another ultrasound and try to charge $380.00 or so again. Is this normal for this type of thing? At this rate, I'm going to run out of money just for the office visits - and forget about any prescriptions . Should I be raising hell about the office visit charge or does this sound about right for what they're doing?

Last edited by stockphotoshooter; 11-03-2011 at 09:28 PM..
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