I was diagnosed with ET over 10 years ago. My main effect of ET is fatigue. This is very variable. Some days I feel fine but on other days it is a bit of a struggle to keep going. This seem to happen mostly on the 2 days a week when I have to take 2 hydroxy tablets. Although I am retired, I do a lot of gardening and housework as my wife has mobility problems. Another problem is that the hydroxy or the aspirins cause intermittent constipation. Do other people have the same problems?
I am new to this site and hope it will be good to talk to other sufferers.
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Caryopteris
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Like you, I find the fatigue variable but can't link it to the days when I have a larger dose of HU. I am retired so can go to bed (and sometimes do) but have found that I can 'exercise' through it by walking or going out somewhere. I have also found that, if I have a very busy couple of days, it seems to take me some time to recover. I'm not certain how much of the fatigue is ET, HU or old age (I'm 78).
However, I'm happy to report that I do not have constipation! I put this down to Holland and Barrat's fruit and nut muesli, lots of vegetables and at least one portion of fruit a day.
It doesn't sound as if you suffer from lack of exercise so perhaps a change in diet would help.
Hydroxyurea is well known for causing fatigue, asthenia. dyspnea. It can be hard to sort out given that ET can also cause fatigue. However, it sounds like you have already figured it out as the fatigue is worse on days with higher doses.
Hydroxyurea can also cause constipation. This is due to compromise to the intestinal endothelium. I found out as this happened to me when I was on HU, only it was constant. I had to take osmotic meds every singe day, with occasional doses of Senna. Unfortunately, this did not completely resolve when I discontinued the HU, though it did get better.
It is important to weigh the benefits vs the adverse effects with HU or any medication. "Hydroxyurea is a highly toxic medication with a low therapeutic index" (American Society of Health System Pharmacists). HU is a toxin. It is teratogenic, carcinogenic, mutagenic and potentially leukemogenic. HU interferes with DNA activity in the body (cytostatic) including hemopoietic stem cells and other cells in your body. It slows down the production of all blood cells. It also can break allele strands and interferes with DNA self-repair function. It is important to understand how HU is working in your body so you can weigh the benefits it provides against the adverse effects you may experience.
Since you are apparently showing signs of HU toxicity, it may be that you need a dose adjustment. You may also want to consider other treatment options for the ET, such as PEGylated Interferon, Ruxolitinib, or other meds. That assumes that you need the cytoreduction due to the actual symptoms you have experienced. Please be sure to talk to your hematology team about the adverse effects you are describing. Unfortunately, some encounter providers who blow off patient concerns. Hopefully you have a provider who will listen to and address you concerns.
All the best to you and do let us know how things go.
Hello Caryopteris and welcome to our forum. The fatigue is horrible, we have some very good hints and tips on our website, you might find them helpful, and you can also download our 'fighting fatigue' information leaflet. Best wishes, Maz
Good morning, in addition to what others have said have you had your vitamin levels checked too? In addition to struggling with fatigue possibly due to ET mine is drastically affected by my B12 levels, which drop quiet quickly.
I was on HU for 9 years and suffered fatigue and constipation. The things that helped me were pacing the day, doing light exercise, drinking more water or liquid. For the constipation I found Psyllium husk fibre tablets from any chemist or health food shop, combined with drinking the liquid they need you to take with them, reduced the constipation problems. Hope that helps.
Good morning. Yes I too am ET with a similar dose of hydroxycarbamide.
Tiredness seems a shared symptom. I try to take exercise when poss but also enjoy relaxing when I di feel tried. I think the balance of not over stretching yourself is important, If possible to get to bed fairly early and just ease up, Then if you het a more lively day, head out into the garden or walking and just enjoy all around you.
Also would support lots of water, fruit cereal and veg.
I also suffer from intermittent fatigue and constipation. I am fairly recently diagnosed with ET Jak2 and have been taking hydroxy (2x500mg daily) and aspirin for six months. The fatigue was quite apparent before I was diagnosed, but the constipation is definitely a more recent problem.
I have discovered 'golden milk' aka turmeric tea and have been sipping a cup full each evening. That certainly seems to ease the constipation problem and I'm not sure which ingredients are doing the job, i.e., the turmeric or the tinned coconut milk! As I'm sure you will be aware, turmeric is very helpful in many medical conditions.
As I'm not overly keen on a strong coconut taste, I'm going to experiment with coconut milk in a carton and/or ordinary part-skimmed milk. Google 'golden milk/turmeric tea' if you're interested, or I'd be happy to give you a couple of links that I found.
And, of course, it goes without saying that a healthy diet and exercise are also paramount to our overall feelings of wellbeing!
I have also had ET for 10 years and have been on HU all that time. I struggle with fatigue as well and find that diet and exercise play a huge part in how I feel. If I’m really good with my nutrition and make sure I get some exercise in, (nothing too strenuous, walking or yoga) I can can manage the fatigue much better. I generally go to bed pretty early and am up with the sun.
Some days it doesn’t matter what I do and I just need to rest...I think that is the hardest part of this condition. It’s also hard for other people to understand when you look reasonably healthy.
I have been very lucky in that the HU has never seemed to bother my digestion. My husband is an avid gardener and that certainly seems to keep him happy...good for the soul.
Caryopteris, Hydrea causes loss of magnesium. Magnesium plays an important role in heart function, hypertension and energy. Search on "magnesium endurance". A magnesium deficiency leads to a vitamin B1 (thiamine) deficiency as magnesium is a co-factor needed to change thiamine to it's active form. Thiamine deficiency has been linked to fatigue, loss of appetite and impaired cognition and pleural effusion. Search on "krispin magnesium" and "mgwater" which are two magnesium informational web sites. Krispin lists other causes of magnesium deficiency in addition to the daily amounts and well absorbed forms. Also look into "nothing boring about boron" for It's benefits. Research each of the B vitamins as they work better together. Benfotiamine is a fat soluable form that the body converts to thiamine offering important benefits for brain function and for the eyes too. Search on "thiamine low energy". Also research Milk Thistle to detox your liver. Always consult your health professional before using any supplement.
I find the fatigue is the ET not the HU, before diagnosis I thought the fatigue was depression but it wasn't. I was hoping the HI was going to help with the fatigue it hasn't. I take magnesium and find when I don't take the fatigue is much worse. The constipation I can relate too.
Hi Sorry to hear about your fatigue and constipation. Many of us try & drink 2 liters of liquid daily which helps. But exercise is tied to less constipation so it’s possible that your fatigue is causing less activity leading to constipation. Constipation is a problem I’ve had most of my life and hydroxyurea hasn’t made mine worse. Maybe try taking your pills at different times ? Good luck. Katie
I also wondered what time of day you take your pills? I also have ET and am prescribed two tablets on weekdays, which I always take after my evening meal in the hope that any fatigue will come on over night!
I am only 42 with PV JAK 2+ and have the same fatigue issues. I don’t think it’s an age thing at all. I see the same fluctuation with severe fatigue for a day or two and then normal for a day or two. It’s a cycle. We moved this summer and I literally slept for Five straight days the next week! I slept 18-20 hours a day for five days. Anytime there is a holiday, a vacation, or a major event, I am drained afterward. The fatigue had caused me to retire early from teaching which I was not ready to do.
I do exercise about 30-40 min at least every other day. That is supposed to help. Drinking a lot of water is also supposed to help with the fatigue.
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