My haematologist is suggesting my critically high BP isn’t linked to PV or my high HCT. Can anyone remember the name of the Italian specialist, who spoke about BP at the London ‘Living with mpn’s’ conference? I would like to find a paper which shows the change in BP linked to HCT.
My memory is poor when my HCT is high
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EleanorPV
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Hi Eleanor, I have just spent an hour trying to find the link to the London Forum for you and I cannot find it. I am sure I remember the Italian' name was mentioned in it? Maybe someone else knows a quick way to locate it for you?
I would continue searching but my eyes are closing, early bed for me I think. Hope otherwise you are well and hope to see you soon. Grace.
Professor Tiziano Barbui Hospital Papa Giovanni XXIII Bergamo, Italy, or Professor Alessandro Vannuchi University of Florence, Italy, Not sure which one.
I posted something regarding BP treatment about a month ago which might be helpful, so I'm reposting it below - Good luck and I hope you get a good outcome from your consultant.
I was prescribed Amlodipine (which is a calcium blocker) shortly before I was diagnosed with ET with JAK2. I had no significant side effects from Amlodipine but after a few months I noticed that my BP was starting to creep up again. I asked my daughter (who is a doctor) investigate whether there is a 'better' hypertension treatment for for people with MPNs and she advised moving to an ACE inhibitor as opposed to the calcium blocker. As it happens Prof Tiziano Barbui gave a lecture at the Living with MPNs Day which demonstrated the effectiveness of ACE inhibitors in patients with PV and I believe he said that they should now be seen as the drug of choice for managing hypertension in MPNs (a fellow poster advised me of this as I completely missed it on the day!). I have also come across a recent article in 'Clinical Advances in Hematology & Oncology
' (March 2017 - Volume 15, Issue 3) which you can find at hematologyandoncology.net/a... . I think the key passage is this:
"There is evidence to suggest that angiotensin-converting enzyme (ACE) inhibitors may be the drug of choice to treat hypertension in patients with PV; a review of data from patients in the CYTO-PV study (A Large-Scale Trial Testing the Intensity of Cytoreductive Therapy to Prevent Cardiovascular Events in Patients With Polycythemia Vera) found a reduced need for cytoreductive treatment in patients who received ACE inhibitors for hypertension"
I talked this through with my GP and he thought it worth trying ACE inhibitors to see if they would also help me (I have ET rather than PV). I have now been on Lisinopril for about 3 weeks and the initial results look good. My BP is still bouncing around but on average both the diastolic and systolic are down about 10 points and trending down, and I have had no adverse side effects other than dizziness on the change-over day. I am due to have a blood test next week to ensure there are no adverse affects on kidney function, but overall I'm a happy bunny.
Keep smiling, and I hope it works out well for you whichever path you choose
John
ps. since this post my diastolic is staying down but my systolic is creeping up again. I am planning to have another chat with my GP once the flu epedemic has eased - he has enough on his plate right now and I have no desire to sit in a surgery full of flu germs
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