MPN Voice
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Back and forth anybody?

Hi everybody,

I am taking Hydoxy since August and I am wondering if anybody has the same happening. At first my platelets came way down, so I was put on 500 mg daily instead of 1000 mg. Now whenever the platelets come down, the Hemoglobin and Hematocrit go up? So I just a a phlebotomy, because HB was 16.7. At other times without changing anything HB was 14. So what is this all about? I would love to be stable :)

I had a lot heavy stress lately, has anyone noticed relation to that?

Thank you so much for any input....

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Hello. I was on hydroxy for about 12 years. I had times of stable counts and times when they fluctuated. I think it's part of the experience of MPN s. And why we have blood tests. And why we are so interesting!

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Thank you very much for your reply, I appreciate it.

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Stress is a contributory factor as it increases Adrenalin but who has a stress free life!

It's taken me two years for all my levels to be in normal range. I was on 1,500mgs daily and 2,000mgs at weekends of HU. My platelets came down slowly so Dracula (my Haemo) dropped a tablet, within a week my platelets shot up by 200. My liver enzyme was a concern and it continued to increase over three months, but since I started my strict healthy eating and exercise, it is now normal. My aspirin was reduced to 1 every other day. I'm also on 14mgs of Ivabradine twice a day for my heart palpitations.

It's a delight when you see no pink markers on the computer screen and everything is normal, but it takes a while to get there!

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Thanks so much for responding...that always helps :) Interesting that your aspirin is every other day. I am taking every day. I will ask about that next time.

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I was on aspirin every day up until this year. My Heamo dropped a chemo tablet and reduced the aspirin to every other day because my platelets and all my stats are well within normal range.

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Hello Love0826!

I can empathize with your concern and stress!!

I am JAK2+ and my HGB count fluctuates. For example this week I went in for phlebotomy I have it checked every three weeks and if above 15 I have a draw. I'm on 500 Mg HydroxyUrea daily, since being diagnosed in May of 2017.

This week on Monday I went for a blood count and phelb if needed. My HGB count was 11.7, how did it get that low??? I had a blood test for the hematologist on Wednesday it came back at 13.4. Your HGB will swing based on any number of things, hydration is important as is some mild exercise etc.

When I started I was at 23 on my HGB. Over the next 8 weeks, it came down to the 15 range. I was doing great and averaging just under 15. I keep a log of my blood counts etc. so I can look for trends and the such, it does help with the stress. I went in for phelb and was at 16.2 no biggie time for a draw. I had at least 12 previous draws with no issues, this draw I plugged the needle in less than 5 seconds. I was well hydrated and the phlebotomist was as confused as I was. I went back two days later, my count was 14.1. Why, oh why? The doctor doesn't really know and says your level will change throughout the day.

It is very frustrating that you have these swings, we all have them, we all get the same answer, no one really knows why they swing, just that they do. You have to look at the readings over time.

What I do proactively is drink at least 2 liters of liquid a day, non-alocholic nor soda. I keep a log of all my blood counts with the dates. I then focus on the average of where I am over time. If I'm at or below 15 more than above it I'm very happy, if I'm under 16 I'm still happy.

This is kinda like dieting, if you follow a regular plan and then on occasion splurge on decadent desserts no harm. If you make a habit of splurging then you got issues. If you hover around 15 or 16 or whatever number you and the doc agree to, then no problem. If you are always above your "number" then time to adjust meds or the number of phelb's. The best weapon in my opinion is that log book.

John B

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Thank you John so much for your response. Yes, I had before suddenly 13.5 and then 2 weeks later 15, I am around 15. But this time it was 16.7, but I also had alot of stress the last couple of weeks. I also keep track, and I am trying to avoid to take more than 500 mg/daily. May be the last 2 weeks I also drank less liquid than my usual 3 litres of water. I am already vegetarian, no alcohol and just a tiny cup of black coffee in the morning. So I don't know what else to cut out. I have also always been exercising a lot since 40 years, and I am exercising now, I am a Yoga Instructor. So it just makes me a sad that this is now something to be constantly aware of.

Thank you so much, Warm regards.

Anke

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Sounds like you're doing everything right! It is just your body and how it self regulates. I imagine if you took a sample from a "healthy" population you would find swings as well, just not as dramatic as ours.

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