I’m ET JAK2 positive and suffer from very bad bouts of fatigue.
I understand from information on the internet this a symptom of both my illness and taking Hydroxycarbamide.
Is my understanding correct?
My haematologist doesn’t seem to recognise this as a symptom. I am currently going through the worse bout I’ve ever had and no amount of sleep is helping. I have emailed my McMillan nurse for advice but haven’t had any reply. My GP has arranged for me to have a blood test next week. I drink lots of water and follow a healthy diet.
can anyone advise me why this happens and what I can do to help with these bouts
Yvonne x
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hello Yvonne, so sorry to hear that you are suffering with the awful fatigue, it is a symptom that many people with MPNs suffer in varying degrees, and it's a shame that your haematologist isn't recognizing it as a symptom, results from various studies do demonstrate that it is one of the worst symptoms and does affect quality of life.
also, at the virtual form we held on 11 Jul, there was a talk/presentation about fatigue and ways to manage it you can view the video on our YouTube channel youtube.com/channel/UC-S_Ic...
Check your thyroides and think about the roof cause. Sometimes, we dont know what is happening in our body and we only think about MPN. A proper diet and micronutrient suplementation help to us checking firtly it like vitamine D, magnesium, zinc, selenio, etc. All the best
Thanks for the advice I take prescription vit D so hopefully that should be fine. I am currently having test this coming week which my GP has arranged 😊
Your must take vitamine D3 in extra olive oil and I think more like DHA and EPA, magnesium is needed too, etc. Your levels of vitamine D or 25 hidroxi have to be higher as 60 and above. You have to study it in your body. Dr Holick is the most expert in this field. Reading his research you should reach a knowledge for you. I am sending this paper too ncbi.nlm.nih.gov/pmc/articl...
There are Drs that don't want to know about how we feel, only what our numbers are.
Seems you may have one of those. If you have access to an MPN specialist, even remotely at Guy's in London for example, that would be helpful. Otherwise you need to be clear with Dr what's going on
As Maz says, fatigue is top of our symptoms, and also medication effects. Sleep not helping is right there with the MPN problem. Did it get worse after starting HU? Do you have blood results while having this severe fatigue, or has it started since your last blood? If it started before, you might already have blood info for the problem.
But others here have discussed vitamin B, magnesium and other measurable blood counts that are not tracked in usual blood tests. I'm not up to date on this, other members should have better details, but it is known these sorts can affect fatigue. If your Dr is cooperative (seems unlikely) you could discuss these other measurables and ask for the appropriate extra tests.
Another problem more insidious is women's complaints get less attention than men's. This came up with long covid when it was new, it's mostly with women and no one believed them. I don't have any ideas how to fix that broken system, but "not taking it lying down" is often needed.
Thanks for your reply. I have had all my other vitamin etc tests last month when my potassium was 5:8 !! All my levels came back ok and my potassium has now gone back to normal.
I will continue to ask for help from my medical team and hopefully they will start to listen better.
I'm sure this is redundant, but have you had Covid infection before? Long Covid causes some of the same things we get with MPN (I've personal experience here)
I agree entirely with EPguy on this. Too many doctors in general don't realize what fatigue is because they have never personally experienced it. To them, it's the way one feels after a hard day of work or play. They don't have clue what it is like to have fatigue as many (most?) of us do with MPNs or some other illnesses. Most of the fatigue is caused by the various cytokines that get ramped up with our ailments. Indeed, it's the major reason why the interferons have been tried (and prove useful to many people). However, different cytokines have somewhat different effects on the quality of fatigue. For me personally, interleukin-1β, is a major enemy. Fatigue occurs as part of the sickness behavior response, a complex and automated behavior triggered by the activation of innate immunity and neuroinflammation. IL-1β causes neuronal activation in the brain and subsequent fatigue [Curr. Opin. Neurol. 2020, 33(3), 391-396]. By the way, IL-1β apparently plays a role in the progression of PMF as well.
It is well and good to make sure we maintain a healthy lifestyle to the extent we can. Fundamentally, we really need to get this "cytokine storm" under control. And yes, those "lifestyle"measures do help with cytokine, but it may not be enough.
So right, the fatigue that gets fixed by rest can actually be satisfying. Fatigue from broken bodies is not the same.
Regarding interleukin-1β, you've likely seen the reports on Curcumin's activity in this area. Some of us are taking the high bio-avail sorts. It seems esp good for joint problems. I don't find any short term benefit but I'll continue for possible long term. If you are known to have complications from interleukin-1β Curc seems worth considering with Dr coordination.
I do feel a possible benefit from NAC supplement and now take 1200/day.
After you suggested curcumin previously, I found a 2017 review that cited 120 clinical studies that found no medical utility for curcumin [J. Med. Chem. 60, 1620–1637]. Since you note it didn't much good for you, maybe it is not up to its hype.
I've actually been unsure about Curc, and have no bias for it. So my comments here are dispassionate. (I do have a bias for NAC) I've posted this survey table before. It indicates Curc is only marginal in MPN symptoms. What stands out is NAC. My experience may match this. But several members have found strong correlation of Curc with osteo arthritis improvements and the like. All are using the newer hi bio preps. Consistent with that, Osteo seems to be the most solid clinical result from Curc studies I've
seen. But I don't see osteopathy discussed in the report. I don't have osteo issues that so maybe that's why I have no instant relief from it.
It is possible that Curc is having a revival from the recent high bio avail formulas. Improvements to INF have lead to its revival in MPN. The report in the reference has:
<<While this high dose was relatively well tolerated, the absorption of the compound is negligible. All clinical studies reviewed here reported that 1 (curcumin) could not be detected in the serum of the majority of test subject>> But the study did not look at the newer preps: <<This Miniperspective will not attempt to address the potential therapeutic effects of even more complex turmeric extracts or preparations thereof>>
Are the hi bio preps we're using still no good? What was the -evidence- used ie were the latest formulas tested? According to the report as above, they were not. <<Available evidence demonstrates curcumin will ultimately degrade upon release into physiologic media, no matter the delivery mechanism.>>
My take is:
1-the authors have a negative bias toward Curc (as above I'm neither + or -)
2- details matter, if the hi bio preps are really hi bio, maybe it can work.
Thanks for the reference to that interesting table and your own experience with NAC. I'll look into it. I wonder why NAC might work.
I don't have osteoarthritis either, but I do have spondylitis, which basically gives pain to neck, shoulders, spine and lower back. However, I don't know that it contributes much to the fatigue. Since I can no longer take NSAIDS since I was put on a blood anticoagulant following an ICU visit with multiple pulmonary thrombi (this episode initiated the discovery I have PMF), the pain is much greater. However, the fatigue definitely has the biggest impact on my life!
As I was only diagnosed a couple months ago, I definitely have not searched the literature thoroughly - basically none on supplements, just the fundamental science. I appreciate you pointing out what you've seen.
Hi Yvonne,I can fully sympathise with how debilitating fatigue is. Ask your GP to include vitamin D deficiency when you get your blood test done. I suffered with fatigue for a couple of years which I put down to ET / hydroxycarbamide. My GP discovered that I had vitamin D deficit and put me on a 6 week course of high intensity vit D supplements and BINGO, no more fatigue!
Fatigue is undoubtedly a major symptom of ET, but it's worth checking if there might be other factors in play too. I now take 1000iu vitamin D every day to maintain high levels and I have had no recurrence of fatigue for about 2 years now. I'm just hoping it stays that way 🤞
As I said in my note, I take 1000iu (or 25 micrograms) daily of vitamin D tablets, but that is to suit my own symptoms and other people may need more or less
I’m so sorry to hear what you’re going through. Unfortunately, as others have stated, fatigue is fairly common among mpn patients. I also agree that it is caused by both the disease and the medications that we take. I go to a functional medicine doctor and she put me on vitamin D, B 12, and methyl folate. I also read that hu depletes magnesium, so that might help. . Also, there might be other things going on that are contributing to your fatigue. For example, last year I got diagnosed with sleep apnea.
I hope things improve for you soon. We are all here to support you.
Hi, I thoroughly recommend an appointment with a fatigue clinic . It helped me enormously. Maybe your Macmillian nurse can point you in the right direction. I find I have to fight my fatigue with exercise. It’s taken me about 4 years to find a way of controlling it.
I used to find fatigue was linked to my platelet and haemoglobin
Maybe Check your haemoglobin level, take magnesium tablets.
Unfortunately it’s your haematologist who can help the most. Good luck
I get fatigue and occasional dizziness. When the haematologist phones she asks how I am, I tell her and she just moves on. I also get huge amounts of bleeding under the skin and have had to stop using a flannel and have to dap with a towel. On Hydroxycarbamide x 9 a week, Indipamide and Aspirin.
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