ALS From Both Sides, ALS Patient Care
ALS From Both Sides
Care of an ALS Patient
By Diane Huberty, Retired RN, Certified Neuro Nurse
...and ALS Patient



Prevention and Treatment of Blood Clots

Clot Watch!

Any pain in the leg should be taken seriously. If the leg or foot swells, the area is tender or painful, hot to the touch, red, or having your toes pushed upward makes it hurt, you need to see a doctor right away. Do not massage it or wrap it or anything else, just get your resistant, obstinate arse to a doctor or E.R. An ultrasound of the leg needs to be done and a typical doctor's office doesn't have the ultrasound equipment. You will probably end up having it done at a hospital anyway, so your doctor will likely send you there rather than the office. If it is a clot, you will promptly find yourself in the hospital. Yeah, argue and groan all you want, but this is necessary for minimum of one or two days.

Your doctor may recommend that you take a blood thinner after you begin using a wheelchair full time because you are at high risk of developing blood clots, especially in your legs, when walking is minimal. If a blood clot forms, the danger is that pieces of the clot will break off and sail through the blood stream looking for places to get stuck and cause major damage. Clots in the lungs (pulmonary emboli) cause rapid heart rate, severe chest pain or breathing difficulty. Clots in the brain cause strokes.

The choice of which medication to use varies. Doctors are moving to using new/novel oral anticoagulants (NOACs) such as Xarelto, Eliquis, Savaya, or Pradaxa immediately but if an an embolism has occurred, intravenous Heparin is more likely to be used.

The traditional treatment for blood clots is to administer Heparin by IV infusion immediately. That requires hospitalization. Heparin is fast acting and can be reversed quickly by stopping the IV infusion if bleeding occurs. Blood tests are done to ensure that anticoagulation levels and at the best level. Coumadin (Warfarin), oral pills, is also started. Warfarin is slow acting and take several days to build up to the desired level. Heparin and warfarin don't affect the same clotting mechanisms so you can be on both at the same time without increasing the bleeding risk. Once the warfarin levels are at the desired level, the Heparin is stopped and you can go home.

Newer anticoagulants simplify the process and shorten hospitalization to about two days. Some patients may not need to be admitted to the hospital at all. Each are fast acting, making a suitable replacement for Heparin (although Heparin and hospitalization is used if there is an embolism, kidney or liver disease). Because they are all pills, no IV is needed. There is no wait for a different medication for home use to take effect so any hospitalization is shorter.

There are two concerns with the newer meds.

  1. The first is the lack of an antidote to quickly reverse anticoagulation if the patient needs immediate surgery or begins bleeding from trauma or other conditions. These drugs begin to wear off by about 24 hours after the last dose, however. At this time, (April 2018), Pradaxa is the only one with an antidote, Praxbind, in use and US FDA approved.
  2. The second problem is the lack of blood tests to measure the level of anticoagulation. Blood tests currently only detect the presence of these meds but not the level of anticoagulation. These meds are more stable and maintain more consistent anticoagulation than Coumadin but there are times when concerns about under or overdosing arise. Pradaxa does have tests that can detect levels better than the others but these tests are not yet approved for use in the United States.

Research and clinical trials are ongoing for other antidotes and blood tests but none are approved for use in any country. This has slowed the transition to these meds.

Anticoagulation medication is continued for three to six months after a blood clot or may be continued indefinitely. The choice of which medication to use is often a matter of convenience versus cost. The newer meds are far more convenient because there is no monthly check of coagulation level needed but the cost of the medication is high.

  1. Coumadin (warfarin) is very inexpensive, as low as $50 per year even without insurance. NOACs are far more expensive at $6000 per year if no drug insurance (or if not covered by your insurance), $500 per year with most drug insurance. Even though Coumadin requires monthly checks of clotting levels, (the test is inexpensive so the cost is still well below that of the newer meds. There are anticoagulation clinics (commonly called coag or Coumadin clinics) available where your coag levels are checked with a simple finger stick rather than drawing blood from a vein. A pharmacist is on hand to adjust your warfarin dose if necessary and a physician oversees the clinic. If there are no clinics near you, your doctor will give you a standing appointment at a lab or visiting nurse for a blood draw. The results will be reported to the doctor and you will be called with any dosage change needed.
  2. Coumadin's low price makes it more likely that the patient can comply with taking it. Since daily dosing is required for adequate anticoagulation, a patient must be able to afford refills and not try to cut the cost by skipping doses of the newer meds.
  3. If coagulation testing is not easily available due to distance or the person being homebound, warfarin's safety cannot be assured and NOACs are prescribed.
  4. NOACs are not affected by diet. Although grapefruit juice has been mentioned as interacting with NOACs, it is apparently not significant. Coumadin doses can be adjusted to any fairly consistent diet. Only large changes, especially in foods high in vitamin K (primarily green vegetables) are likely to be a problem.
  5. Drug interactions occur with both warfarin and NOACs. With warfarin, you will be asked at each visit about any new drugs you are taking, drugs you have stopped taking, dosage changes, and whether you have been sick. Ideally, you will call the coagulation clinic with any medication change. They will schedule you for a check in a few days to see if your levels have changed and adjust your warfarin dosage if necessary. It is seldom necessary to stop taking warfarin because of a new medication. Adjusting the warfarin dose will usally get anticoagulant levels at the prescribed levels. This will require some extra visits to the anticoagulation clinic or lab to achieve.

NOACs have quite consistant anticoagulation in all patients so no checks of anticoagulation levels are needed -- which is a very good thing since no tests for NOAC levels are available! Dosage is standard unless the patient is taking drugs known to interact with NOACs. All patients have preliminary liver and kidney function blood tests done and repeated yearly at least. Liver or kidney disease or advanced age can prohibit the use of NOACs. Dosage adjustments and much more frequent lab work may allow its use in these situations and with some interacting drugs. Dosage will be determined by the blood tests.

There are hundreds of drugs that interact with NOACs and warfarin but non-prescription drugs are the most commonly used drugs that can't be taken with either! When the doctor or nurse asks what medicines you take, you have to include non-prescription ones such as those for pain, heartburn relief, laxatives, and any herbs or specific vitamins or minerals or any other things you take as part of your ALS regimen. They may be "natural" but they are still drugs. Aspirin, Ibuprofen (Advil, Motrin) and naproxen (Aleve) should not be taken when on warfarin or a NOAC. That leaves Tylenol for simple pain relief and it is not for frequent or prolonged use. If you need to use these pain relievers regularly, your warfarin or NOAC doses may be adjusted to allow their consistent use.

Side effects of anticoagulants may include headaches and the NOACs can cause a variety of digestive problems, from nausea to heartburn, bloating or gas. The primary concern is bleeding. Small cuts may be slower to stop bleeding, tooth brushing may cause a little gum bleeding, and bruising easily is common. These are not a problem if not extreme but are worth mentioning to the doctor or clinic nurse. A moderate cut should stop bleeding within five to ten minutes if pressure is applied but a large gash will require an ER visit. (Note to my son-in-law and other tough guys: Duct tape is not sufficient!)

Signs of bleeding from the stomach or bladder must be reported. Stomach bleeding shows up as very dark to black bowel movements. They may be tarry and have an especially bad odor. There may be actual blood visible although fresh red blood is from the lower intestine or hemorrhoids. Vomit will look like coffee grounds in slower stomach bleeds. There can be obvious blood in severe bleeds. Blood in the urine will turn it brownish, rusty, or pink. Bleeding from the bladder is fairly common with anticoagulants and may not require a dosage adjustment but must be reported.

A blow to the head such as from a fall requires a CT scan to rule out bleeding. Waiting for signs of a brain injury such as a change in alertness is definitely not smart when on anticoagulants, especially NOACs which don't have an antidote.

The bottom line is that a blood clot is very common as ALS limits mobility -- far more common than the risks of carefully regulated anticoagulated blood running through your blood stream.

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