A few years ago while still in South Africa I was rushed off to the emergency room with a suspected heart attack, my BP was 220/110 and I was taken off to the heart unit at Panorama hospital and checked out by a cardiologist the next morning. It wasn't a heart attack thank goodness but my BP was still moderately high and I was put onto a tablet called Cozaar. My BP still wasn't dropping enough for the docs liking and he added amlodopine to the mix. My average BP which the doc didn't like was around 145/80.
I stopped the Cozaar after a few weeks and my BP continued to average around 145/80.
During the time that I was on amlodopine I experienced the following:
1. Unexplained swelling of left arm
2. Shortness of breath
3. Severe tinnitus
4. Numbness in the middle toe of my right foot
5. Unexplained swelling of right lower leg
6. Joint pain increased to the point where I could barely walk
7. Severe anxiety related to all the additional symptoms
I went on for 2 years thinking they had misdiagnosed me with mild hypertension and that there was something seriously wrong with me. One day I decided to do some research on amlodopine and suddenly everything was clearer. If you do a search for Patient Info and amlodopine, you should find a thread with over 600 posts - read them before you go that route, especially if your numbers are only a little low.
I went to see my GP straight after reading that and insisted he take me of the amlodopine- he did and put me on a diuretic called indapamide - BP lowered to 115/72 average within a week.
I took myself off the blood pressure meds in April of this year and slowly my body is starting to get back to what it was pre-meds. My bp still averages around 115/72 - now if only I could get my platelets to behave as well - at last check on Monday they had risen to 960.
Everyone reacts differently to medication, I don't do well on it, never have - I don't even take aspirin for my ET - I take a supplement called pycnogenol. I'm not saying you will have bad side effects, but please - inform yourself of all the risks before taking them. There are milder options out there with less severe side effects. Chat to your GP and also consider looking at more natural means of lowering your BP before going on meds - diet, exercise, lower suger/salt intake and keeping hydrated could make a world of difference on that bottom number.
Thanks for this, just starting on the journey and will certainly ask for a review if I get any nasty reactions. Like you, I tend to feel that if there are any side effects, I'll get them!
But I'll give it a go anyway.
I'm getting more positive than negative reports so here's hoping...
Hi. I have been on Amlodipine now for more years than I can remember. I have not had any side effects and my errant blood pressure has been well controlled. All the best we are all different Malaika
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
Hi John, I was googling ‘is Amlodipin an Ace inhibitor’ during Prof Barbui’s talk! Was disappointed to find out it wasn’t. Since my blood pressure is under control I’ll stick with it for now, but have made a note of your useful experience with Lisinopril for future reference. Susana x
Very high hypertension was the first sign of PV for me. I have been on Amlodipin for 3 years (10mg). In the first couple of months I noticed some ankle and feet swelling, but that subsided and since then I have had no side effects. Have a wonderful Christmas! Susana x
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