Hi groupies. Sure hope all are well. Got my first and second blood test and platelets have dropped to normal on 500 mg of Hydrea.. yea for me! But I’m asking people with ET JAK2 positive and on Hydrea ( around 500 mg daily if possible) for some help. First I’d like to know how you’re feeling on this dosage. I’ve some issues that both hemo and GP are telling me is not related to either ET or Hydrea. Its depression. This is not depression!!!
I’m tired! Plain and simple. Some days it’s too hard to even breathe. Other days pretty good.
Brain fog. Like walking into a black hole.
A little unsteady on my feet.
Headaches
What I’m looking for are some posts from you that I can show both doctors that this is not just in my head.. or is it??
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Scrollernut
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Fatigue hits me at times, sometimes it's just there all day .
Headaches i get regularly
I'm 'clumsy ', as I call it, seem to bump into things and at times feel unsteady on my feet.
I have times where I go blank as to what I'm doing and/or why, and feel like I'm having moments where I can't express myself well as I can't find common words.
my haemotologist thinks they are related to my condition rather than the hydroxy i take.
Hi, because you state 'got my first and second blood tests...' I am wondering if you are newly diagnosed, so not sure if my reply will help with your enquiry - but here goes. I was on hydroxy, your dose, for eight years or so. At first it was fine but over time all the symptoms you describe occurred. You can get resistant to it. I stopped it and gave myself a rest from it all but in time I had to try another drug -Interferon- with both, the side effects were awful. I again said I would back off from this kind of treatment [I wanted a more gentle approach] as I had no life. Finally about 18months ago, maybe longer, both my haematologist and I discussed the way forward as we were running out of options. I am on pulsed Busulfan now and it has turned my life around - but I have been warned the treatment will{or may] turn aggressive in time so not for everyone. I went ahead as I am 70 anyway. I have also changed my lifestyle - lifestyle is key, and I have managed to keep within range so the last treatment I had was last September. For me, it was side effects, and not the MPN, that was causing the problems. Take care x
I take hydrea 500mg x4 a week. I have no issues with this drug. However, it can lower all blood counts, so maybe advisable to check your rbc.
When I was diagnosed with ET in 2016 I was placed on 500mg hydrea daily. My platelets went from 500 to 288 very quickly, so the dose was titrated accordingly.
Prior to treatment with aspirin/hydrea my symptoms were fatigue with occasional scintillating scotoma, dizzy/vertigo type spells. The fatigue still remains, but the latter two symptoms have entirely disappeared. How much of that is down to aspirin, or hydrea or a combination of these drugs I can’t say. It is clear now these symptoms were caused by the state of my thick sticky blood. I thought it was age related and would not have bothered a Dr at the time, as the symptoms were too occasional. My raised platelets were actually picked up on a random blood test and followed up by my GP which I’m very grateful for.
I don’t understand the fatigue thing. I can be absolutely fine and very active, and from nowhere it randomly descends. I had it before treatment, so I’m inclined to think it’s more ET related.
Yes, I have suffered from all these symptoms. I was diagnosed with ET Jak2 in 2008 after a bout with really bad headaches. I’ve been taking hydrea along with various other meds over the years and often had to have adjustments made due to the brain fog and fatigue. A year and a half ago I became anemic and found out I had progressed to MF. Just be assured that these symptoms are not “in your head”. They are the norm for most of us.
Scrollernut I have had ET diagnosis and high platelet count for almost a year. I started on Hydroxy and recently moved onto Interferon ; I've gone through all the symptoms that you're experiencing. To begin with I found the brain fog hard to deal with, I'd literally forget words, or what I was talking about mid sentence. Now my ongoing issue for me is the fatigue and inability to sleep, my consulant is considering another drug in July to help with this but wants to see if it will self correct first. I went to an MPN forum and the relief I felt, when one of the presenters was talking about patient fatigue, giving examples of how others felt - it was great to know I wasn't going mad! This forum is great as people give you the support and kindness to ensure you don't feel alone.
Yes you can certainly get fatigue and brain fog due to the ET. Common side effects from hydroxyurea include: dyspnea (short of breath), asthenia (fatigue-body weakness) headaches, drowsiness. Serious side effects include: hallucinations, seizures. source ePocrates online.epocrates.com/drugs/...
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Since an MPN can also cause some of these symptoms, it can be hard to sort things out. It may well be a bit of both the HU and the MPN. Best clue would be - did these symptoms start before or after the HU?
Do note that women are often misdiagnosed with depressive and anxiety disorders. In my experience (I am a retired MH professional) misdiagnosis happens more in PCP and other doc offices that do not have expertise in psychiatry. What you are describing is 100% consistent with a MPN patient taking hydroxyurea. Having said that - who wouldn't be a bit anxious/depressed coming to terms with having a type of blood cancer and starting chemotherapy?
As my PCP likes to say, the simplest explanation is usually the best. What you describe is consistent with your diagnosis and treatment for a MPN. Needing time to deal with the emotional impact early in treatment is also normal. You do not need an additional diagnosis to explain what you are experiencing. Your hematologist needs to take potential side effects from the hydroxyurea seriously and take them in to account in dosing. HU is a toxic medication and monitoring for signs of HU toxicity is an important part of effective treatment. The benefits of cytoreduction need to outweigh the adverse effects in your experience as the patient.
Hope that helps. Suggest you go to the ePocrates (or other) website and print out the list of Side Effects. Approaching the doc with a calm, educated and informed approach is the best way to advocate for yourself in managing your own care.
I DO tell that to my doctors. I told my doc " I am HU intolerant based on side effects at sub-therapeutic doses. I am not taking hydroxyurea." Right choice for some, but not for me.
Will repeat my mantra "Assertive patients get higher quality care. Passive patients do not." The ancillary comment is "Doctors recommend. Patients decide."
A few questions/observations which may or may not be of help ...
1. Are you taking Aspirin 75mg to "thin the blood"/declump the platelets (anti-coagulant)? If so, are you also taking a supporting drug of the PPI type (proton pump inhibitor), intended to reduce the risk of gastro-intestinal damage that might be caused by long-term use of Aspirin? After my ET diagnosis in Feb last year I was started on Aspirin 75mg EC with PPI Lansoprazole (no chemotherapy at that stage, partly because I was still just under 60?). After several weeks I had to discontinue the Lansoprazole as it seemed to be causing loose bowel problems and making it harder for me to fight off a gut infection; almost as soon as I stopped the PPI I felt that "brain fog" had lifted somewhat. (To replace the PPI I was put onto an H2 antagonist, Ranitidine (Zantac); I had some problems with this when taking it twice a day but I now seem to be managing better on one at night, taken well after any food.)
2. Are you drinking enough water etc? Hydration is constantly emphasized on this forum; I understand that we are recommended to have at least 2 litres (3.5 pints) of fluid every day. Even a slight degree of dehydration can cause headaches and unsteadiness on your feet, especially if you have lowish blood pressure and/or the weather is warm (this would be true whether or not you have an MPN).
3. Coming to terms with an MPN diagnosis could naturally be a cause of anxiety and depression. In addition, MPNs have an inflammatory dimension and there is increasing evidence that this dimension might cause mental health problems. My experience so far is of a small (but significant) improvement in my mental health since chemotherapy with Hydroxycarbamide was added to my Aspirin etc early this year. My platelet count at that point was in the 800s/900s area and spiked in Feb to over 1000 (probably because of an infection - that may even have been CoViD19?). I was started on one 500mg capsule of Hydroxycarbamide daily in late Jan and the dose was increased to 8 capsules a week after the platelet spike in Feb. My platelet count has come down to below 500 but I have been advised to continue the chemotherapy on the same dose of 8 capsules a week. Speaking as a lay person, I wonder if the reduced level of platelets in my blood has brought about a reduction in inflammation that may have helped my mental health. However, I am aware that other factors in my life, nothing to do with medication, may also be involved (or even the change of season from winter to spring to summer).
4. I get fatigue, often after even mild exertion but especially after meals! How much of this is due to the ET or medication I don't know, as I am chronically short of sleep anyway; diet may also be involved.
I hope that you get some help from your doctors to ease your symptoms ...
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