Does the medication help with the fatigue or is that just going to be an ongoing issue?
I was just diagnosed with ET with the JAK2 mutation 2 days ago. When I looked at the symptoms I realized that I have had some of them for years (looking back on the blood tests, the platelets have been high and rising since at least 2016). I am taking hydroxyurea 500 mg/day, with weekly testing planned until we get a base reading on how I respond to the medication.
I'll keep an eye on this as I am new to this disease and this post hits home. I moved recently and my new doc discovered my platelets at 1000, a trip to the hematologist a bunch of blood tests and a bone marrow biopsy later and ET was confirmed. I have the Jak2 and another related mutation that only showed in the biopsy. I looked back at my blood tests from my last doc and found my platelets had been between 985 and 1100 for at least 4 years, and he never told me. I am thankful to be diagnosed and treated now. I have been on hydrea for 6 weeks and have a follow up next week. My first follow up after 3 weeks showed my platelets drop from 985 to 520. So I am encouraged. Like you I am curious about long term, but it seems to vary, I can say I have times where I am really tired and others where I am not, and I am still trying to figure out how many of these symptoms I had and just learned to live with.
It’s awful you were never informed about your platelet levels. It seems that some Drs ignore them
No doubt, I went from shocked, to angry, to grateful to have a new GP. I am guessing if I was at 1000 4 years ago (the farthest I can go back) then I have had it a while prior. Oh well, glad to have found this place, as it is hard to find people that have even heard of it.
You were lucky it was found before a heart attack or stroke! I suspect that the rarity of the disease is a contributing factor to the delay in diagnosis. I was surprised the number of people here who were diagnosed when their platelets were relatively low or had gone up recently.
I live in a large metropolis in the United States, it would be interesting to see if there is a correlation between location and swiftness of diagnosis.
Fatigue is a well recognised long term symptom of ET for sure, but ET may not be the only cause of fatigue. I am ET JAK2+ and suffered badly from ET until my GP diagnosed and treated vitamin D deficiency, which massively reduced my fatigue. It's worth asking for a check at your next blood testJohn
Hi , welcome, it’s too early for you to get to grips with your diagnosis but for me it was a relief. I was suffering from ‘lethargy’ and bought over the counter iron tonic. Within 3 weeks Of taking hydroxi I started to feel better. It’s a difficult question to answer. My fatigue did lift when my platelets dropped. A lot of people carry on as normal. The question is wether or not you are able to survive on a low dose of hydroxi. For me I’m on I consider, a high dose of meds, along with the fact that my meds impacting negatively on my heamoglobin. You must eat really healthily in order for your body to cope. Good luck
I am convinced that the reason I did ok for the at least 4 years I had it before being diagnosed is because I eat a whole food plant based diet, no meat or dairy, and drink a lot of water daily.
Hi, for me exercise is the key, I can't stress enough how important it is! I run every other day, not always easy but I feel so much better afterwards. Obviously, it's really good for the mental wellbeing too! I have ET JAK2 pos and take 1000/500 hydroxy alternate days plus daily aspirin. Hope this helps. Ian
I can’t even walk for more than 45 minutes never mind have a run, my legs are so heavy it is a struggle
I am sorry to hear that exercise is hard. I felt much better at the original dosage of hydroxy (500mg) but it has been increased to 1,000 and I am starting to feel difficulties. Not very happy at the moment.
Totally agree😀
hello Nightshadow, welcome to our forum. Fatigue is a horrible symptom and one that sadly very many of us have in varying degrees. The medication can help to alleviate it, but can also I am afraid can cause it, I hope that it improves it in your case. We have some information on our website which might help you, including a link to our information leaflet - Fighting Fatigue in MPN, with hints and tips on ways to help.
mpnvoice.org.uk/living-with...
kind regards, Maz
Thank you for the link.
Fatigue is a common constitutional symptom of MPNs. It can also have other causes (Vitamin deficiencies, iron deficiency, etc.) Fatigue (asthenia and dyspnea) is also a common side effect of HU. You will likely need to do a bit of detective work to figure it out with your care team. Once clue would be when did you notice the fatigue? (Before of after starting HU). Have you had a nutritional analysis? Do you have any co-occurring medical conditions with fatigue as a known component?
It can be a bit trick to sort is all out but it can be done. Hope you get it sorted out soon. Meanwhile Mazcd already provide a link to some great tips for dealing with the fatigue.
All the best.
I noticed the fatigue before starting HU and it is too early to tell as yet whether HU will relieve or increase the fatigue. But it is good to know that the possibility of relief exists.
No other medical issues of note other than some minor arthritis. And thanks to a pretty thorough lab work I know my vitamin levels are good.
Just a side note. I also have osteoarthritis, which is linked to the systemic inflammation so many of us experience with MPNs. I have successfully used Curcumin to treat the arthritis. It works way better than any NSAID I ever took. N-acetylcysteine or L-Glutathione can also be helpful.
Many thanks for all the replies. As disturbing as getting this diagnosis is, at least I know there is a reason for feeling as bad as I've felt in the past. In a way it is good to know that I actual have a physical problem, rather than just a lazy piece of humanity.
Hi, late on response, as usual 😀Some fantastic responses above, as always.
Ive found over, time since my diagnosis, that the most important 3 things to keep fatigue at bay are;
Drink lots of water/squash
Exercise
Eat Healthy Food
X
Thank you!
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