Do you blame your fatigue and brain fog more on hydroxyurea or ET (high-platelet count)... which one and why?
Hi I'm just starting on this site. I'm trying to figure out how to be less fatigued and more clear-headed so I can do my desk job well.
I would like your advice on what would make me less tired:
I learned that essential thrombocythemia (my marrow produces too many platelets) often causes fatigue and light-headedness. In fact a study found this is experienced by 64% of people with ET. But I also read that fatigue is a common side effect of taking hydroxyurea, especially after increasing dosage. I switched from two 500mg capsules to 3 capsules per day a few days ago and feel really tired today.
So I'm wondering whether 2 per day or 3 per day will be better for my tiredness. I don't know whether the hydroxyurea or the ET is making me more tired. I feel that I haven't done much at work since May compared to the workload I did before. I started taking hydroxyurea in August and I want to blame the hydroxyurea and switch back to 2 a day.
As you know, the normal range for platelet count is 150k-450k. My platelet count has fallen from 1000k to 500k taking 2 capsules per day and my doctor switched me to 3 capsules to get it within the normal range. On 2 capsules per day my RBC and HgB is at the bottom of the normal range, so I'm not "anemic" but I don't want to go lower either.
Given that I live in a rural area, my doctor probably only sees a few MPN patients despite being a blood/cancer doctor. I had been blaming my tiredness on other things but now that I'm googling all this I will call his office. But I want to hear from you first.
Looking through the other posts, I noticed a couple of you have found low-dose Ritalin to be very helpful too.
Thanks
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I expect the answer is your question is a bit complex and may require some detective work and/or experimentation. You are correct that fatigue is the most common constitutional symptom associated with ET and the other MPNs. You are also correct that fatigue (asthenia) is a common hydroxyurea adverse effect. The same can be true for both light-headedness and brain fog, ET or HU. Sometimes the only clue is when did the symptoms begin? Before or after the HU.
HU adverse effects are dose dependent. If HU is the cause, then increasing the dose would likely increase the adverse effects. Reducing the dose would typically reduce the adverse effects.
ET constitutional symptoms are sometimes, but not always reduced by an appropriate dose of HU. Note that these constitutional symptoms are not directly related to your platelet levels. Thrombocytosis increases risk of thrombosis, hemorrhage and microvascular symptoms. There are other factors that cause other symptoms. One of the most significant is the overproduction if inflammatory cytokines. This is thought to be the cause of many MPN secondary symptoms. At the core, MPNs are inflammatory disorders, Controlling inflammation is a key to reducing symptom burden.
Note that there is no particular value in terms of thrombosis risk to having platelets fall within the "normal" range for many people with ET. Many MPN Specialists no longer use 450 as a target. When a number is used, some now use 600. Others are now considering that the delta (degree of change) is what actually matters most. silvermpncenter.weill.corne...
Treatment for ET and the other MPNs needs to be individualized based on the unique profile of each person. This requires input from a MPN Specialist. Most hematologists rarely see MPN patients. It is necessary to consult with a MPN Speciats to ensure optimal care. It is worth doing whatever is necessary to see a MPN Specialist. Many of these docs will consult once or twice a year while ongoing care is provided by a local hematologist. This is what I do as the closest MPN Specialist is two hours away. Here are two lists.
The good news is that if it turns out that HU is the problem, there are other options for cytoreduction for ET. Pegasys is the other first line treatment option for ET. There are also second line options like Jakafi and Anagrelide. there are also clinical trials for newer drugs like bomedemstat and Besremi. I was HU-intolerant. I have done much better on the interferons, pegasys then Besremi. The IFNs are both more effective and much easier to tolerate for me. Note that we are all different in how we respond to these meds. Here is a bit of information on treatment options.
Suggest adding a MPn Specialist to your care team and consulting with a MPN expert doc to best answer your questions. this will allow you to form an optimal care plan. All the best moving forward.
I'm a 75 year old active male with pv for last 3 years. I think the reply from Hunter5582 is exactly on target. You have to find a MPN specialist. Certainly not clear to me what the rationale is for increasing your dosage.
it was Hydroxy not ET that caused all those symptoms on me . I was normal before it & a fatigue wreck on it with brain fog & loads of side effects. Took myself off it after 6 weeks & informed Haemotology. Took only aspirin for 4 months & returned to health normality. Search an MPN expert. I now trying Interferon & MPN oversee my Haemotology despite not in my area. All done online 👍
My ET was undiagnosed for 10 years. The last 4-5 years before diagnosis I started feeling more tiredness and put it down to age, drank more coffee to keep me going at work. Now I have been on Hydroxy for 2 years and I think it increased the fatigue. The only thing I have managed to change is to eat smaller meals, as I would crash soon after a big meal with overwhelming fatigue. Eating smaller amounts helps mitigate this. Other than that,I don't manage the fatigue that well I think. Some good days, some bad. The brain fog/concentration side is hard to judge as I am also menopausal, which also causes those symptoms.
I was told my platelets and other bloods now ‘ perfect ‘ when I got to 520 . I did point out under 400 is normal but she said it was best to keep all bloods at good level rather than take more Hydroxy and perhaps some levels being to low.
Of course this is based on her knowing my medical history and I have no concerning symptoms .
you have some great replies already , in the short term it maybe useful to ask your Haem why they want your platelets below 500, if it’s not for specific risks to you or symptoms then I would question why you can’t stay on 2 HU per day if you feel better, most expert haems would be happy with platelets at 500 unless you have other risks or symptoms.
Less drugs the better and less chemo defo better IF not needed. If your still not happy with your haems answers best seek an expert to see occasionally who can write your local Haem, a lot of us do that and it works very well, if your local Haem is uncomfortable with that , well time to look elsewhere perhaps.
The problem we have is that both the condition and the drug can cause fatigue, and it can be hard to figure out which applies to you . After many years of ET treated with hydroxy I stated suffering extreme fatigue, after ruling out other medical causes drs shrugged and said it was ET. But life was becoming miserable , since I couldn't function, I asked to try reducing dose of hydroxy, drs were reluctant since blood counts were very well controlled, but eventually agreed. Reduction can only be done slowly, it was a reduction of 500mg per week every 6 months, but fatigue did improve.
Eventually life returned to mostly normal, I went from 10 x 500mg a week to 7 and my platelets are pretty constant at 400+, instead of 250-300 on higher dose.
Sometimes drs do have trouble seeing you as a whole person not just blood count numbers, you have the right to decide if you are prepared to accept a possible increased risk due to higher platelets to improve your quality of life, please advocate for yourself to be part of decision, and good luck
My fatigue was definitely caused by my ET. I spent a year in intermittent brain fog and exhaustion before I was diagnosed so the distinction was clear for me. However when I was put on 1,000 mg a day the fatigue came back. I am now on 500/day for five days and 1000 for two and this is a good balance for me.
I take the complete days dosage of HU at night as I noted the fatigue would hit most strongly about 5 hours after taking the medication. If you are not already taking HU at night give it a try and see if it makes a difference for you.
Hi there. I've had ET for about 6 years and in the early years I suffered frequently from fatigue. To be honest, I've never really been able to determine whether it was primarily driven by ET or hydroxy, but I'm pleased to say that I've been free from fatigue for 2-3 years, which I put down to:1. My GP diagnosed a vitamin D deficit and put my on 6000iu per day for 6 weeks and the results were incredible. Fatigue had disappeared by week 3 and I continue to take 1-2000iu per day.
2. It took a while to get my medications in balance but I seem to have found an equilibrium at 12 X 500mg hydroxy per week, so I am virtually symptomless now
However, we are all different in the way we respond and how ET affects us, so what worked for me might not be applicable to you, but I would recommend getting a simple blood test for vitamin D
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