Has anyone with ET had a stroke or a T.I.A?

[vic01]

[tombs]

Since I was diagnosed with PMF over 3 years ago, I have had 2 T.I.A.'s. Maybe that's why most of us appear to be on 75mg aspirin!

[geordie]

Hi tombs I was diagnosed with PV in November 2011. Because I collapsed at work and was taken to AE I was given a CT scan and subsequently an MRI scan. I was advised that I had evidence of minor vascular disease (lacunar infarcts in the left basal ganglia and hippocampus (due to minor strokes) and a cystic lesions in left temporal lobe. I had been suffering from a lot of headaches and felt light headed (feeling I was about to pass out). However I believe these strokes were caused by a combination of the thick blood due to PV and high blood pressure due to a very stressful job.

I have been retired from work on ill health (so no work stress any more) and take aspirin, simvastatin 40mg day and Hydroxycarbamide 2x500mg per day. I also have a venesection when my haematocrit goes above 42 due to my high stroke risk.

[vic01 in reply to geordie]

Thanks both for the responses, it is comforting to chat to others as at times it can feel a tad isolating. Keep well x

[Johnj]

I had suspect TIA MAY 2011 and was in hospital for 6 days. The effect was blurred vision.

and temporary loss of sight out of one eye for approx 5 minutes. I was diagnosed with ET Aug.2000. Be aware if you are on aspirin (75mg) - I was on it for 10 year, but had to come off it after a serious stomach bleed and spent a further 9 days in hospital. I no longer take aspirin. On various permutation of capsules 1.5gm Hydroxycarbamide and 0.5gm Anagralide daily. The good news is that I generally keep well and it was only in the last year that I had any serious complaints which appears to be the result of my ET..I dance at least once a week, until recently swam regularly. I try to walk regularly. But most importantly look on the bright side of life. I am 74 years of age.

[ETphonehome in reply to Johnj]

John, was it dispersible aspirin you took when you had your stomach bleed ?

Also, did you take it on an empty stomach ?

[marianela in reply to Johnj]

Johnj

I take aspirin but not the dispersible type - have been on it for a while and no ill effects - was diagnosed with ET about 12 years ago. Had to come off Hydroxy last year as developed ulcers = I also keep reasonably well, get tired quickly but that could be also due to age - I do think that some ailments that plague us are not always connected to our ET. It is good to hear you being positive - well done! I am older than you and think it must be tough for people in their 30s and 40s if they are diagnosed with ET or PV.

[ETphonehome in reply to marianela]

Hi marianela,

I strongly recommend you ask your doctor for dispersible aspirin as it is meant to be much gentler on the stomach.

Over the years I have seen a number of MPN'ers have problems with bleeding which lead to them coming off the drug. This is unfortunate as Aspirin really is an important drug for our condition, maybe the most important.

In order to reduce the chances of having problems I think it is important to take dispersible aspirin, have it after eating food and take no more than the optimum dose for treating MPN's which is 75/80mg.

If you still have problems there is another drug called Clopidogrel which is prescribed as an alternative to Aspirin but works slightly differently.

[Johnj in reply to marianela]

Thanks for your reply, I also suffered with Leg ulcers that turned to cellulitis and spent 9 days in hospital. I was taken off the the Hydroxycarbamide and was put on 2.5gm/day Anagrelide + aspirin (75mg), however although the Anagrelide controlled my platelets and my blood counts were reasonable my Hb fell and shortly after I had a stomach bleed which also resulted a further spell in hospital. The powers that be, thought it was a combination of Anagrelide and aspirin that caused the stomach bleed. I initially was taken off the Hydroxycarbamide because the antibiotic drip that I was on in hospital was not taken effect due to the Hyd. Now I am on a combination of Hyd/Anagrelide, but no aspirin Blood levels good.

[kitty210310]

I had a heart attack 5 years ago, which is when it was discovered that my platlet levels were high. I was diagnosed as having ET after having a bone marrow biopsy some weeks later.

I struggle at times as I have always been a fit and healthy person and don't like the way I feel now. I take 500gm of Hydroxycarbamide mon-fri and 1000gm sat and sun aswell as 75mg of aspirin.

I am 55 years old.

[vic01 in reply to kitty210310]

Well, it is comforting to know that there are so many people n the same ET boat and that the majority of the time we are fit and healthy it is wonderful to know that you are 74 years young John J. I am 40 years old and take anagralide and and hydrea daily and am usually in good health, I am currently waiting for an MRI to see if it was a TIA or a stroke I had a month ago the last one was 2 years ago.

[ETphonehome]

I am 41. I was diagnosed with ET at the age of 33 in 2003 following an MI.

To this day I have never found out exactly what happened but I suspect I had a splenic infarct (blood clot in my spleen) which then moved and caused my MI.

My first symptom was an intense throbbing on the left hand side of my lower abdomen like an alarm clock was going off inside me.

[JAK2positive]

Hi vic01! I have PRV and ET and recently suffered a minor stroke despite red blood cell and platelet counts being within normal bounds thanks to hydroxycarbamide and occasional venesection. I also have hypertension, which is controlled by a variety of drugs. So, all under control but I still had a stroke, which is very frustrating. However, I have had a very busy year at work culminating in a difficult and demanding December. It's therefore more likely that my stroke related to insidious stress rather than PRV or ET. Living with MPDs can be challenging but they're not the source of all our problems. To deal with them effectively, we need to look after all aspects of how we live.