I recently had an MRI and it was reported I have small vessel disease and after today’s Haematology appointment they are considering starting me on hydroxycarbamide because of it despite my platelets only being 812 today and I only recently turned 54 so 6 years earlier than I was expecting to start!
I also have high blood pressure as well so I know we are all treated individually and this with small vessel disease are probably the main reason to start reducing my platelet count.
I was wondering if anyone else on here has mild small vessel disease and ET?
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Jonnymitts
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Not sure if its at all helpful, but my platelets are at 600 and I’m two baby aspirin, eliquis and starting pegasys soon - mind you Ive had a TIA and MI (I’m 39). Get those platelets down! You dont want to clot!
If you have an unhealthy diet that alone may fix your blood pressure- or if you already eat healthy - I dont know what to tell you, but thankful Ive found this forum.
Greetings from Fleetwood England. It is like a prevention exercise. Control the platelets , prevent any episodes related strokes or heart issues. At leased your team are closely monitoring you. Simple hints / tips.
Look at your life style, if you smoke in excess don't, think about mindfulness or meditation. Look at what you eat.
Leave the medical situation to your team. Remember you are not alone. We are here to offer support and find a safe space to explore what will be best for you.
Hi thanks for the message I think it is the way forward though just 6 years earlier than I was expecting. I don’t smoke and I already do yin yoga for the mindfulness 🙏🏼
I may have something like this. Don’t know yet. I have vein mapping in a few week and hematology towards the end of March. The vein mapping is in my lower legs. My right foot swells up if I don’t stay active. Currently taking a low dose aspirin only. Platelets are 566.
Hi hope you get some answers in the next few weeks! I’ve been on low dose aspirin for 4 years now and have had platelets between 700-900. Thanks for your support!
I haven't got small vessel disease, my platelet levels are similar and I have high blood pressure, and am about to start peg treatment. I've already been taking aspirin. Though some people may have higher platelet counts it is important to get the levels down. Wishing you all the best with treatment!
Hi thanks for your message, my small vessel disease was only picked up in an MRI to investigate my headaches so lucky they found it before an episode happens, so will be back in 6 weeks to review and then start on hydroxy.
I was diagnosed with microvascular disease, also known as small vessel disease, in 2006. I was diagnosed with ET Jak 2+ in 2012. Unfortunately I then suffered coronary artery disease and had 2 stents fitted in 2015. I don’t smoke, have a healthy diet and exercise when my arthritis allows. Heart problems run in my family.
Hi Karen, thanks for your message. It looks like my blood pressure probably contributed to the small vessel disease, though sounds like you have a healthy lifestyle despite the heart problems.
Yes I know it’s not always easy when we get fatigue as well. I’ve also been struggling with plantar fasciitis which has been restricting my exercise, though I just had a series of shockwave therapy and now doing physio on it so should be more active soon 🙏🏼
I used to have issues with plantars fascitis too. No longer an issue. Losing 50 pounds helped. I also have been taking a Turmeric-Curcumin supplement that has made a big difference in the plantars fascitis and osteoarthritis. I believe these issues are related to the JAK2 mutation impact on inflammation in the body. Interesting research underway on this topic.
Thanks for your message! At least they have given me some time to get my head around it and sounds like the best idea! I also like to travel so keeping insurance costs down essential!
The #1 cause of hypertension is Sleep Disordered Breathing/Obstructive Sleep apnea. If you make noise, snore or are told you do when you are sleeping tell your doctor.
So many patients don't like or tolerate CPAP. They just put the machine in the closet and the disease goes untreated. Dental Sleep Medicine specialists can fabricate an oral appliance that moves your mandible (lower jaw) forward a few millimeters. This opens the airway. If pressure is still required to keep the airway open CPAP can be added to the device. Much less pressure is needed when combined therapy is utilized.
If you sleep alone use your smart phone (many apps available) or a recording device to rule it out.
Restorative sleep is being viewed as the "Cradle of life"
by experts. Micro vascular disease, TIA's, CVA's, atherosclerosis (hardening of arteries), abdominal fat increase, weight gain, insulin resistance, Type 2 diabetes, impotence (you need healthy blood vessels for the hydraulics 🧐).
Polycythemia Vera develops in patients with obstructive sleep apnea in an attempt to produce more oxygenating blood cells. It's not an MPN. It certainly raises stroke risk. It develops in people too when at higher elevations as the body tries to restore normal oxygen levels
Treating this common and serious disorder can only improve overall health. Improved health could only be a positive as we deal with our MPN and prescribed therapy.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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