Thinking about stroke risks

I read a moving piece in the Washington Post last week about a woman trying to teach her mother how to read following a stroke that left her with alexia, the inability to read. As a voracious reader, it reminded me that those of us with ET are considered to be at higher risk for blood clots (aka "thrombotic events") of all types, and one of the most serious of these types of events is stroke.

So what does the stroke picture look like for ET patients and what can we do about it? The research can be confusing, but here are some recent research and practical ideas I hope are helpful.

ET patients have a higher 90-day mortality risk after suffering a stroke. An article in The Journal of Neurological Sciences this January studied outcomes for patients with ET and thrombocytopenia (low platelet counts). That study of nearly 1,000 patients showed that the 90-day mortality rates for those with ET and thrombocytopenia were higher. The good news here is that ET does not seem to otherwise affect the severity or recovery of stroke patients. I could find nothing in this study that showed that the patients were sorted by the mutation that causes ET, even though other studies have suggested that this is a factor in clot risks.

Platelet counts and age alone are are not indicators of stroke risk. In a 2014 study, again in The Journal of Neurological Sciences, a group of 102 ET patients were studied over 13 years. About 10 percent of the patients, ranging in age from their 40s to 80s, had strokes. At the time of the stroke, 72 percent of the patients were taking platelet-reducing medication, and the median platelet count was pretty low (450). (Remember that "median" means that half the patients were below this level and half were above.) Complicating the picture is the fact that 83 percent of the stroke patients had two other stroke risks besides ET. However, researchers concluded that ET should be suspected as a stroke risk. Again, I saw nothing in the study that showed that the study differentiated patients by the mutation associated with ET.

ET patients with inherited MPL genes have a higher risk of all types of clotting incidents. A study of eight Italian families in the journal Haemotologica (2010) showed that embolisms, including stroke, was the most common cause of death among 24 family members with the inherited MPL gene. In the study 15 family members died, nine of them from from embolism, usually a stroke. Age did not seem to be a factor in these deaths; age at death ranged from 43 to 80. (This study makes very interesting reading for anybody with the MPL mutation, which is much rarer than the JAK2 or CALR.)

What can you do?

Get good sleep and quit smoking. Quality sleep can reduce your chances of stroke and reduce your stress. Smoking has vascular effects that increase stroke risks. Give it up. I know it's hard. I quit 30 years ago and sometimes still want a cig. I'm pretty sure it wouldn't taste nearly as good as I remember.

Ask your doctor if you need to lower your blood pressure. One way to reduce your chances of having a stroke, whether you have ET or not, is to control your blood pressure. Diet, exercise, and a really cheap drug that your doc might prescribe called hydrochlorthyiazide (HCZ) can help. (I pay $7 for a three-month supply of HCTZ; cheaper than the $10 co-pay.) Ask your doctor what your blood pressure is if you don't know and find out what he or she thinks should be a healthy reading for you, and make sure your doctor knows you are concerned about elevated stroke risk due to your ET.

Move around. People who are sedentary (guilty!) tend to have more strokes because they're not pumping the blood through their veins and arteries. Cardiovascular exercise is important, even if it is boring and you'd rather be reading or knitting (I have managed to read while on my exercise bike, but knitting is a bigger challenge). Moving around also helps lower blood pressure, see above.

Ask your hematologist about aspirin therapy. A lot of people, including doctors, are shying away from anti-inflammatory drugs like aspirin, ibuprofen, and other pain and headache meds because of side effects. My family doctor has recommended ice and physical therapy for my sciatic and arthritis pain (and it does work). However, a baby aspirin every day or every other day might be recommended by your hematologist to reduce the "stickiness" of your platelets that could prevent clots from forming.

Find out what type of ET mutation you have. ET patients with the CALR mutation are less likely to have clotting problems than those with JAK2 mutations. Those with the MPL mutation seem to be at higher risk. However, research on the different types of ET mutations and stroke risk is still a bit scanty. Ask your hematologist if the type of ET mutation you have makes you more or less likely to have a stroke and what medication might be best for you.

Keep a close eye on your platelets.  ET patients can have strokes with relatively low platelet counts, so platelet count isn't the only factor for strokes, but it should be assumed to be a factor. Get your platelet counts at the regular intervals your hematologist tells you to. If they take a big jump, call your hemo and ask for advice.

Know the signs of a stroke. The American Stroke Association suggests FAST to remember the signs of stroke:
F = Face drooping on one side
A = Arm weakness, numbness, inability to raise an arm on one side
S = Speech that is slurred or inability to repeat a simple sentence ("The sky is blue").
T = Time to call 911
The quicker you can respond to a stroke, the greater your chances of recovering from it.

Be well!

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Related: JAK2 or CALR?

Related: The blessing of a good night's sleep