Any advice?

[Mylo6]

Hi all. My husband has PV, he had a heart attack back in June and was diagnosed straight after with jak2+. His level was .54 and he had approx 6 venesections. His levels came down over time, but now are dropping too low. He’s down to .39

His iron levels are low, and he is suffering with restless leg syndrome at night. The doctor said to stop his statins for 2 weeks. This didn’t help. He said to try tonic, again no help. The haematologist has now prescribed iron tablets and his legs are feeling much better, but I’m a bit worried that his levels will go back up. Has anyone else had anything like this and could maybe offer some advice?

He’s 48, slim and fit, on heart meds now because of the heart attack. Aspirin and clopidogrel.

[Aime]

Hi, once I had blood venesected when I shouldn’t have and ended up on iron tablets for two weeks only and they did help as I was almost crawling to get anywhere, I felt so awful. However, we are all different so phone haematologist and double check how long he has to take iron for and ask for blood tests to ensure his hematocrit is not going back up too high again.

Don’t be afraid to be assertive and get this sorted out as he needs to have his bloods at a level which is good for him.

Kindest regards Aime x😻

[Mylo6 in reply to Aime]

Thanks for replying. I’d never read that anyone had been on iron, so just wanted to check. He’s been prescribed 4 months worth, but has bloods at the end of Jan and a phone call with haematologist early Feb. So we’ll see what it’s up to then.

[Tico in reply to Mylo6]

Hi Mylo6. If your concerned I would give the Haematologist a call as quite a lot of out patient appointments are being cancelled at the moment. I was on 3 monthly appointments but for sometime because of issuses with blood have had to go in for bloods every 2 months then telephone consultation. I was due to go tomorrow but received a letter last week cancelling it, no doubt because of being overwhelmed with Covid cases. I've also spoken with a friend who has had an urgent outpatient appointment cancelled, also probably another 'victim' of Covid. Tina.🤗

[tifftriesit in reply to Mylo6]

Four months seems too long if it’s daily. That would cause the need for more venesections then make anemia. It would become a bad cycle. When I needed iron (I have PV Jak2+), I did only two weeks on low dose iron.

Another time, regular dose iron once a week for a few months to combat severe fatigue.

[tifftriesit]

I have PV JAK 2+ as well. At the beginning, it’s tricky to get it all balanced out. The heart attack may have been a result of the undiagnosed PV. PV that is untreated can cause all kinds of issues. Hopefully, things will straighten out now.

When I was first diagnosed, I had 4 venesections, and then my iron got too low. What happens is that taking out all that blood so quickly depletes the iron. Iron is not good to take for people with PV because it will build up the platelets again. HOWEVER, your husband is still in the phase of getting the blood to a stable point. The body can’t function without iron and severe anemia makes cells not operate, causes fatigue, and creates the leg tingle that is part of PV. Take just enough iron to fix it and stop. I’ve had to do this twice in five years. Get a blood test every two weeks for the platelets and iron so he gets just enough iron to fix the severe anemia but not enough to mess up the platelets and cause the need for another venesection. Then he will just keep up the cycle otherwise— low anemia- take iron- venesection needed.

It will be okay. One of the best things that you chose to do is to ask on here. Those of us with experience are often better to ask because we have it and have been through it and often know more than these doctors. They mean well, but so much about PV is still unknown.

[MCW22]

I can usually tell when my iron is low as my legs won't keep still when I'm trying to relax and when it happens at night making it difficult to get to sleep I end up even more tired. Every few months, depending on my blood numbers my haematologist prescribes iron tablets on alternate days for 2 weeks.Carol

[hunter5582]

Getting the balance of iron deficiency right can be tricky. Inducing iron deficiency is the purpose of the venesections. It controls the erythrocytosis. However, you can get too low and have problems because of that. I was over-phlebotomized and HCT got down to .32. I could not tolerate the iron pills so elected to just eat a more iron-rich diet and let my body recover on its own.

To answer your question - yes, taking iron pills will drive erythropoiesis up. It is all about the balancing act. Those of us with PV have a dysregulated iron metabolism. The KISS version is that our body's want to use all the available iron to make red blood cells rather than store it normally. that is why we end up iron deficient, but not anemic (they are not the same thing). Here is one of the articles on this topic.

nature.com/articles/s41375-... .

The good news is that there is something new under FDA review in the USA. PTG-300 is a hepcidin mimetic that alters how out body's metabolize iron. It lets our iron levels come up without driving erythrocytosis up. it is a very promising option that should be available soon. I do plan to try it when it is available.

One other thing to check is Magnesium levels, which can also be cause for restless legs. I am also significantly Mg deficient and take a supplement for that.

Hope your husband finds the right balance soon.

[Brand0at]

Yes, I was prescribed clopidogrel along with aspirin after I had a stent put in last September. The only thing with this medication is it causes bruising. I look like I have been beat up LOL, but have not had any side effects from it. I hope this helps, and wish you good luck.