New here, question on blood pressure, fatigue

[Sewingtime]

Hi, great to discover this forum, and read about others' experiences! I was diagnosed with PV and the JAK2 V617F mutation in June 2021, after suffering a heart attack in March '21 due to a blocked artery. Strangely my blood counts in March were not too high, but increased rapidly thereafter, and I was sent to a hematologist in June '21, by which time my readings were high. I had a stent placed in my blocked artery in March, and have been on blood pressure, blood thinner, aspirin, and cholesterol medications since that time (prescribed on hospital discharge by cardiologist). Added to that was hydroxyurea by the hematologist (so now I rattle!), and then Jakafi in its place (as my PV had caused horrible skin itching for many months). Jakafi has been a wonder drug for me! I also had a 3 venesections/phlebotomies when first seeing the hematologist, but then the medication seemed to kick in. All my counts are now normal, with the exception of my platelets at 430, which the hematologist seems unconcerned about (his focus was on hematocrit, rbc, wbc). I feel my condition is under control, for which I am very lucky. I do worry about my blood pressure (often high), and my heart. I love my hematologist, but would like to find a cardiologist who understood MPNs more, and to join up my two treatments better. I also suffer from fatigue. I am 58, eat healthily (no meat), active, work out, do yoga etc. I hate that I had a heart attack at 57. I haven't seen any recent posts on blood pressure or heart issues, and wondered if anyone else had been diagnosed with a MPN after heart attack? And, I guess fatigue is just something we live with, any tricks for dealing with it? Thank you for reading this long post! I am pleased to find you all.

[hunter5582]

Hello and welcome to the forum. Glad you found your way here. It is a very good place to be.

It sounds like you have found a viable treatment plan with Jakafi. It is well known for helping with the pruritis. Glad to hear it is working for you. I was unable to tolerate HU and it was not very effective, requiring phlebotomies every three weeks. I ultimately ended up on Pegasys then switched to Besremi when it became available. Thi has worked much better for me.

I did also have hypertension. It resolved when the erythrocytosis was under better control. I also had to have heart surgery for paroxysmal atrial tachycardia. I also have a condition called Neurofibromatosis Type 1 that cased a brain tumor a few years ago. The NF doc and the MPN doc are both at Johns Hopkins so it was a bit easier to get the collaboration to occur. It helps that it is all the same medical record. I still have to make sure the collaboration occurs. My heart doc was in a different health system. Ensuring that collaboration is all on me.

The bottom line with MPNs is that we have to be our own best advocates and case managers. Knowing how to move records and reports between health systems is very important. So is being assertive about a holistic approach to your care and ensuring that all providers work that way. We also need to be educated about MPNs as most doctors have little/no experience with them.

I am glad to hear that you have a relationship with a hematologist who you love. I actually have two hematologists. One is the MPN Specialist at Johns Hopkins who I see twice a year for consultation about my care plan. The other is a local hematologist, who I really love, who handles my ongoing care. This arrangement works great.

All the best to you.

[Sewingtime in reply to hunter5582]

Thanks so much for your kind and generous reply! You had me reaching for Dr. Google in a few places (still many terms I need to learn), but as you say, becoming well-informed is an absolute must if we're to become effective advocates for our own care. I live in Southern California, and I'm lucky to have access to the UCLA health system for my hematologist: going to put in a call today to try and start seeing a cardiologist in the same system. Thanks again! Helen

[EPguy]

I've had high BP for years in spite of good health and weight. It went sky high at my Dx late '20. Controlling blood counts has helped, I'm also on very low dose BP meds. Since switching from HU to Besremi it may be trending lower lately.

So far however my cardio is ok.

[Sewingtime in reply to EPguy]

Thanks for your reply! Good to know about Besremi, and that is could be helping with your blood pressure. So much great info on this forum!

[Mazcd Partner MPNVoice]

hello Sewingtime and welcome to our forum, glad that you have found us. Very pleased that you love your haematologist, it is very important to feel confident with the care and advice you receive from your medical team, it makes a huge difference.

With regards to fatigue, it is definitely a very debilitating symptom of MPNs, and one that lots of people suffer from in varying degrees, you do have my every sympathy, I have ET and do suffer with bouts of fatigue now and again, but thankfully not too often any more, being on Hydroxyurea definitely helped me. Although it sounds counterintuitive when you are feeling fatigued, it really does help if you can move around, try some gentle exercise, going for a walk is good because you are moving around and getting fresh air, and I find it helps to do a walk in stages, I take my dog out and say we will go to the first field and see how I feel, if I feel ok I will say go to the tree/gate at the bottom of the field, and see how I feel and so on, doing it in small stages and always remembering I can turn round at any time at go home. If you don't want to go for a walk, you can try some gentle exercise indoors, evening dancing around the kitchen to your favourite music can help, or even try yoga, many people find that helps.

We have some hints and tips on our website about managing fatigue that might help mpnvoice.org.uk/living-with...

best wishes, Maz

[Sewingtime in reply to Mazcd]

Hi Maz, thanks so much for the great advice, and the link. So much good info, thank you! I am pretty active, and get at least 10K steps in most days. I still have the luxury of working from home due to the pandemic, so maybe I'll try a little nap in the afternoons, along with making sure I exercise, that might help! Thanks again, Helen

[EPguy in reply to Sewingtime]

I agree on the action. I move around a lot also, but when I get a really bad spell it's often when still, and I get moving. It's not quite as effective lately however, I don't know why.

[Meatloaf9]

Hi, I have found, at least for me, that the only thing that helps with fatigue is any kind of exercise. I use cycling when the weather permits and a treadmill when weather is bad. It always gives me a boost of energy but only lasts a day or two. I try to do something that causes continuous motion for 45 minutes every day. Walking is also recommended. Good luck in battling the fatigue.

[Sewingtime in reply to Meatloaf9]

Thank you! You're right, and a reminder to keep active is very important. I'm going to get away from my computer, take a break and walk right now! Thanks, Helen

[Threelions]

HiSome great answers above.

I just wanted to say a massive HELLO. Well done for finding us.

[Davesutts]

Hi there, I’m 49. I’ve had similar experiences to you, I had a heart attack in June 2020 had a stent fitted. Then in Aug 2020 they diagnosed me with pv. I’m on the same heart meds as you by the sounds of it, aspirin, atorvastatin, Bisoperole, ramapril. I also take magnesium, vit d, cod liver oil. I take HU also 500mg 5 times a week. I also take a medicine called Pregabalin which is amazing at helping with my leg cramps. I’m from the uk so don’t know if you’d get that in the US. My platelets were 480 before HU now they stay around 220, my blood pressure as always been normal to low, last one I did it was 107/76. Feeling really good atm so fingers crossed, I’m assessed every 3 months but I like to do an interim blood test in between so every 6 weeks to keep me happy. keep smiling always helps.

[Sewingtime]

Thank you, Dave! I'm pleased you're doing well, makes me feel hopeful. I'm going to add a magnesium supplement, after reading about it. That makes a lot of sense. Thanks for the tip!