I was diagnosed 9 months ago with ET. Platelets just over a million. BMB sent to Mayo Clinic confirmed ET. I was 55. I was smoking at the time.
Prior to diagnosis, I was having some serious symptoms. Vertigo (dizzy, imbalance, vision problems, fatigue, infamous "brain fog"). Had brain scan with contrast, no mini-strokes.
I was put on baby aspirin and one hydroxyurea per day due to symptoms. Was having blood tested often. Platelets came down to high 400's. I started to feel much better. About 4 months in I ended up in the hospital for a bacterial infection in my rectum. I was on antibiotics and did not get released for nearly 5 days. They had no clue if it was related to my ET. I then quit smoking after struggling with it for so long and began to feel near normal, almost feeling "great". If you smoke, QUIT!
Now, 9 months in, the fatigue and brain fog has come back with a vengeance. It is winter here and I have a sedentary job and know I am not moving around as much as I should. I also am not drinking as much water, probably due to my activity level being down.
I have a blood test coming up. I will talk to my doctor. I know this is probably common just wondered if anyone else roller coasters on these symptoms. I am sure some people do.
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MPN123
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It’s definitely normal. You can be feeling great one day and end up in the ER the next. That’s why it’s really important to keep up with your doctors appointments. Keep hydrated and try to eat a healthy diet. You may have to have your meds adjusted.
Hi. Sorry to hear you’re having trouble again. My understanding is that lack of enough hydration can increase our platelet counts (as well as other cells). I was told I it’s really important to drink close to 2 liters of non-caffeinated beverages daily. Give that a try & see how you feel. There are lots of ways to make water more interesting: cucumber slices, lemons/limes, fruit. And decaf tea or coffee & milk. Good luck. Katie
As Katie has said, keeping hydrated and avoiding caffeine helps me. I’m starting to link some of my “brain fog” moments (I completely lose train of thought and if in conversation what we are talking about - sometimes mid sentence) to when I’ve not drunk enough water. It’s my constant memo to self to do
Cycling in and out of symptoms is not uncommon with MPNs. It is often hard to tell what is the ET, what is the hydroxyurea, and what is something completely unrelated. Given that you experienced these symptoms prior to starting the meds, it would be a reasonable assumption that they may be MPN related. However, it may be more complicated than that.
If you have a JAK2 positive ET, then the role that increased inflammatory cytokines play in secondary symptoms may be part of the issue. You also had a recent severe bacterial infection. This can also impact your body's responses in some complicated ways. (e.g. reactive thrombocytosis). It is even more complicated since you are taking HU, which is a toxic medication. Many people tolerate HU OK, but adverse effects are pretty common. HU can affect your immune system, which may or may not have played a role in your recent infection. HU can also cause mucositis (ulcers in mucosal tissues), which may or not have played a role as well. (Note: I am not saying HU caused the problem - just that it may be a part of the puzzle).
As you already heard - hydration is really important. So is staying active no matter what season it is. I would add from my own experience, that exposure to daylight is also really important in regulating your body's diurnal response. Given the number of unknowns - perhaps taking control of the things you can control would be the best approach. Exercise, hydration, and moderate exposure to daylight may really help. You did not mention nutrition, but I would add that a healthy diet is crucial when managing a chronic disease state like ET.
Thanks for the info. I did neglect to mention I am JAK2 positive (part of the fog). You have given some excellent insights. I am going to work on some things-including finding a doctor who is more aware of MPN's.
Roller coaster is a good expression for what I feel too. There are days or weeks that I feel good and I think I've learned how to manage this thing. Today I woke up feeling completely wiped out, despite 9 hours of sleep. I feel like I've got a ton of bricks on top of me.
I'm thinking that I'm exhausted because of a stressful day yesterday.
Yes to plenty of water, good nutrition, plenty of sleep, but even with all that, there are these bad days. I'll try to get out for a walk, will start by just stretching gently, but it is a struggle when I feel like this!
I’ve been taking HU for about a year. It’s lowered my platelets to 400 from 650. I have myelofibrosis. I had some side effects with migraines, but my hematologist adjusted my dose (using Droxia) to 600 mg/day, and no side effects the past 2 months. I’m JAK2 positive. I exercise 6 days/wk for an hour, and have lowed my weight from 200 to 170, and it has helped me feel much better! Congratulations on quitting smoking! Ron
I am P V,bordering M F now after 12 yrs. I still do not manage my self to avoid the dreadful fatigue and some brain fog.I keep active ,dogs ,horses,not as much as before P V ,but I try,I am Proffessional artist / sculptor,but whilst
I love my work I tire very quickly with the concentration needed.Frankly I don't think the fatigue etc ever goes,I keep hydrated too,but that can be a nuisance ...up thru the night and spoiling going out !!Now on Rux as H U stopped working for me last year.I make myself rest afternoons,then have a little energy afterwards......it's the M P N and the medication my consultant tells me and must be accepted....not easy I know but at least we live nearly normal lives .Just keep strong.....bit of meditation rests the brain a bit from worrying.Best Wishes,keep going !!
Yes you are same with me mpn123 I got now like 400 platelets bit still having some brain fog, fatigue , and imbalance sometimes in walking. I said to my doctor but she said I have high anxiety of my illness and she said go to a psychiatrist oh my goodness thats another money to pay I decided not and I just leave with all the symptoms there is nothing I can do. Truly hard to deal everyday since I am an Elementary School Teacher. Very very hard.I will just cry sometimes and go on with my life.
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