This is my first post after being diagnosed and i am struggling.
I was diagnosed with ET Jak2 last December after a 20 month wait from being referred by my GP, i am 62. Was diagnosed with reactive thrombocytosis in 2012 so no idea how long i have had ET. I also had some TIA's in 2018 which they think now may have been caused by my high platelets which have been above 550 for 12 years and were 1025 in December. In am taking blood thinners plus Hydroxy 500 mg each day.
I can tolerate most of the symptoms but the fatigue which has been awful for the best part of 8 months and is affecting my mental health now. One of my passions has been walking, whereas i could easily walk 7 or 8 miles a couple of years i am struggling to walk 3 now and the following day i pay. I have no idea if this is caused by the ET or the Hydroxy, is it ever going to improve, when i have asked the doctor she says she doesn't know. If you have the same problem how do you cope?
Thank you.
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Arnoldthecat
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Sorry to hear about the fatigue issue. It is the most common MPN constitutional symptom. Unfortunately, asthenia (fatigue) and dyspnea (breathlessness) can also be side effects from hydroxycarbamide. It can be hard to sort out what the cause is. Sometimes timing is the only clue. Did the issue start before or after the medication was started?
When managing a MPN, it is important to consult with a MPN Specialists. Most doctors have little to no experience with MPNs due to their rarity. Your care team needs to include a doctor with MPN expertise to sort out and manage the issues you are facing. Here is a list of MPN Specialists. mpnforum.com/list-hem./
I never experienced fatigue until I became chronically iron-deficient from venesections. What worked for me was to pace myself and power through the fatigue when I had to. Most people do find that continuing to exercise does help. Also very important to get a good sleep.
That is not necessarily the case. Some doctors do no know what to do about the fatigue, which is different than having to accept it. It may be a chronic condition that you learn to manage or it may be something like a medication side effect where there are options to address the problem. There are other treatment options if the medication is the cause of the fatigue. It really goes back to consulting with a MPN Specialist who has the expertise you need to sort out the cause and the options to manage the issue.
The fatigue I experienced was from a nutritional deficiency caused by treatment. Not only was I iron deficient, but had Vit B/folate, Vit. D and magnesium deficiencies despite a very healthy diet. Determining the cause allowed me to address the issue. I changed my treatment plan and shifted to Pegasys. I allowed by iron levels to increase through diet and ultimately felt much better.
It is worth noting that ensuring a proper nutritional balance is important when managing a MPN. I also have GERD and take Nexium, which can interfere with absorbing nutrients. I work with an Integrative medicine doc and monitor my nutritional status as part f my overall care planning. I also have Neurofibromatosis Type 1, which predisposes me to Vit D deficiency. It has all brought home the lesson about how important holistic care is in maintaining health.
Wishing you success in figuring out the cause of the fatigue and how best to deal with it. Please do let us know what you learn and how you get on.
I too really struggled with the fatigue side of things until my platelets and medication were under control was told by a occupational therapist to take magnesium which has worked wonders, I have had to give up my business because was struggling with the stress from it which doesn’t help, so now do a few hours which I can manage, healthy diet, bit if exercise and drink plenty of water hopefully things will calm down once you find your triggers and learn to manage.Can feel for you because when I used to finish work my body knew and would struggle to get to the car sometimes, still tend to get it when my body stops, good luck!
Thank you for your comment. I will mention the magnesium to the doctor on Monday when i have my appointment. I took early retirement 3 years ago and to be honest there is no way i could hold down a job at the moment,
Fatigue by far is the worst...especially if you've been fairly active and then not to be able to do wha you normally do..I did notice for me that when I was on Hydroxy it was worse (I was not able to tolerate Hydroxy for a number of reasons and switched to Peg). My GP in consultation with my MPN specialist did get me on a broad multi-vitamin and I significantly upped my hydration (water). That has seemed to help somewhat but there are still days I have to push through...I do push through though as I have found that the lack of exercise ends up being worse (I feel worse).
Thank you. I didn't feel too bad for the first couple of weeks on the Hydroxy but feel my energy has dropped the past few weeks. I am beginning to feel i am existing rather the living. I am drinking about 2 litres of water a day. Trouble is i can't push through i just hit a wall and that's it.
Vit B12 does the trick for me When i started with supplements, all my symptoms of fatigue, falling asleep after lunch, brain fog, headache, dropping things, eye problems all miraculously disappeared. As expected, my doctors were clueless about it, so i had to do my own research. Now have tons of energy.
I use methylcobalamine. I haven't heard such good reports about cyanocobalamine. It seems to be commonly sold as its the cheapest of the 4 forms to make and often the one sold in shops.
If you've had issues for some time, it can take a long time to get a good recovery. I would suggest trying the methyl version and try a high dose, at least 5000mcg. You can get it online. You cant overdose on it.
Initially, for a few years, just daily high dose sublingual b12 (3000-5000mcg) and that is when I had all the improvements, quite rapidly. Due to increasing prices for sublingual, I then got vials to inject as they work out so much cheaper and I don’t need them so frequently.
Obviously every person has a different reaction and some need more and do better with injections every other day, as per NICE guidelines, until symptoms go away or stop improving. That can take up to 2 yrs for some poor folk.
I wouldn’t take oral tablets that are swallowed. Clearly my issue was with absorption ( I eat meat, dairy etc) so sublingual help get around that problem, and they worked fantastically for me.
yes, I have that book. I have digestive problems and have had very low B12 counts. I take Nexuum 40 mgms daily.. which reduces acid. I find it so difficult to get my GP to prescribe B12 injections. Have brought it up to around 300 which is really at lower end of recommended . I’m taking Solgar sublingual B12 at moment. But will look into your 5000 . Where did you source you injections if B12 and syringes etc . Thank you for your reply
hi apologies for the late reply, super busy day. As you will have read in the book, anything that affects the acidity of your stomach, making it less acidic, will affect your bodies ability to extract b12 from the food you eat, or supplements you swallow. Antacids are a well known cause of b12 deficiency, especially if you’ve been on them a long time. Maybe ask your GP if you could try a therapeutic course of B12 injections, just to see if it may help. This is usually a course of 6 injections over a few weeks.
Maybe you do have enough b12 and it’s something else.
However, it’s good to know that blood testing to check b12 after supplementing is usually useless and not recommended. Only a dr who knows nothing about B12 would get you to take a test. Being in range is not the same as being optimal for health. Studies show that up to 80-90% of the b12 found (after taking supplements) with a blood test can be inactive- unavailable to your cells. It’s just an analogue that makes it look like you have enough, but you may not. The Active B12 test is a bit better , though again not perfect . The pernicious anaemia society has a wealth of info about testing . Currently there is no single test that can accurately measure your b12 after supplementation. It’s just pointless to do it or rely on the results. The only helpful test is the one you have before taking anything.
I was diagnosed with ET in early 2016 by bmb put on hydroxy, which brought my platets down to about 400, but end of 2016 had severe fatigue episodes, was changed to anag and others but no better, but found to have AF, so had various meds to manage that, after another bmb diagnosed with MF and changed to jakavi, fatigue better, but some fatigue and got symptoms of shingles.
AF now under control, found out that meds cause magnesium deficiency so I have been taking magnesium malate which has helped.
Got sepsis last February, survived that, but back to fatigue, and got depression, which are slowly improving now.
But having said all that it has led me to look at life in a different way, made lots of new friends, so we have to accept what has happened to us, be grateful we are survivors , and look for different ways to make the best of the life we have.
hello Arnooldthecat, I am so sorry to know that you are experiencing fatigue, it is awful. We held a webinar last year about symptom management and managing fatigue, it might help you to watch the video for some hints and tips on how to manage the fatigue
I think the stats say about 92% with MPN have fatigue, it may be worth checking thyroid and possibly other hormones, it may also be partly caused by the Hydroxy?, is trying a different drug an option.?
Your right haems know MPN. Cause fatigue and some just accept that, I have fatigue with PV, it’s very frustrating, I try to optimise other areas of my health, diet, hormones, moderate but regular exercise, rest when needed and don’t push yourself too hard. Although MPN can cause issues for sure , unfortunately so can other things as we get older so it’s maybe worth checking on other things as well.
If you can’t do 7 miles then how about a mile or two more often, I do a little exercise before breakfast, 5 minutes of stair climbing, 15 minute brisk walk before lunch, 20 minutes of light weights and 20 minutes walking or bike before evening meal.It is all done without wearing myself out, ie moderation, I’m 65, PV 12 years on Rux 5 years.
I have the same issue. Sleep has been a major problem, less than 5 hours a night and waking up 8-12 times during that period. Does anyone use a sleeping aid?
I find fatigue a vicious circle. Rest too much because of fatigue then I can’t sleep. I force myself after a few days to do something light then work up back to my ‘ normal routine’ I must have a routine. I sleep with headphones on most nights I listen to the radio it totally relaxes me I’m shocked by how little a progrAmme I listened to because I fell asleep haha. Try bbc sounds.
Sorry you are going through the horrible fatigue many of us suffer. I’m 60 and Calr+ and was much more fatigued when taking hydroxy. Now on a 3 month trial of Clopidogrel and resveratrol 500mg daily. Still get fatigue often 1 or 2 days after say a 6mile walk or a dance class. I find several bouts of rest then gentle walking or gardening throughout the day help push me through the fatigue. Just hoping my platelet count isn’t rising without the hydroxy as I can’t tolerate that level of fatigue and headache that medication definitely caused. Often when I think I’m too tired to move , if I do some gentle walking and increase my fluids,it really helps me feel better. Hope you find your own coping mechanisms too.
Sorry to hear you are suffering with this monster fatigue too. I hope you find some coping mechanisms. I am on the same boat, recently diagnosed 35 years and a young mother. Trying to find some way of coping and hoping once I start treatment things will improve. Tried exercise, a short walk yesterday and today am paying for it .. I can barely move. All the best.
Think like most of us we suffer … when I finish work I drive home and park outside the house … I might just sit in my car and just look at my door for 30 minutes just to gather myself together before getting out of the car . I call it my reset time as after work I feel I have nothing else to give .
it’s awful isn’t, I’ve learnt to take short cuts. Do what you love. Exercise is vital in combating fatigue.
If going out for the evening I stay in bed for the day.
If I’ve looked after my grandchildren for even 1/2 day . I chill out the next. If family come over for lunch I now do simpler meals.
Casserole, or if roast dinner one very large stewpot and in goes cauliflower and broccoli. Maybe frozen peas and carrots in an other with jacket potatoes. Puddings are bought.
simplify your garden if need be. Low maintenance is the answer to very thing do that you can keep doing what you love.
I don’t know your age or financial circumstance but if possible pay for jobs to be done. It might mean cutting back in other areas.
Quality of life is important.
I went to fatigue clinic. It entailed sitting down with a physio and occupational therapist and discussing my weekly routine. Where as I thought I needed a physio to build up my stamina what I really needed was the therapist to tell me for even a normal person I was over doing it.
I still don’t get it right all the time. It’s when the unexpected happens and I’ve emptied the tank.
He was on hydroxy for a few years It absolutely drained him made him iron deficient the fatigue was hurrendous . It was so bad he was struggling to work.
He's now on ruxolitnib and feels so much better no fatigue only thing he suffers is being really cold all the time.
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When i started with supplements, all my symptoms of fatigue, falling asleep after lunch, brain fog, headache, dropping things, eye problems all miraculously disappeared. As expected, my doctors were clueless about it, so i had to do my own research. Now have tons of energy.
How does ET fatigue progress?
How often do you have blood tests?
Fatigue from ET or hydroxycarbamide
How do you deal with the emotions linked with hospital appointments?
How frequently do you see your MPN specialist?
