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MPN Voice
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What fatigue?

Hello everyone, had a haematology appointment yesterday, following an increase in Hydroxycarbamide my platelets are within a normal range. Struggling with fatigue and having made adjustments to my working week, my haematologist asked how long I have had fatigue. I have had ET since 2,000, but apparently the fatigue is nothing to do with medication or ET. Has anyone else been met with this reply, and has anyone else had ET this long? Thank you for reading.

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Many people have had that same reply. It is soooo annoying!

Fatigue is the one symptom that most of us share, at some level. The leading MPN experts across the globe all acknowledge this too 🤷🏽‍♀️

Mary

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Hello Bob,

Mmmm..... sometimes visiting a haematologist can really mess with the head... it is a bit like an episode of The Matrix where what one thought was fact turns out to be some sort of virtual reality, and the real world - according to the expert in the white coat - is quite different!

Last time I saw her I asked my haematologist if fatigue was a side effect of Hydroxyurea, she responded that she had administered Hydroxyurea to thousands of patients and fatigue wasn't something that they experienced, in fact they often felt better than before because the Hydroxyurea helped normalise their blood counts. She didn't deny that I had fatigue or that it may have been caused by Hydroxyurea, but she did seem to think that Hydroxyurea causing such a thing would be very unusual indeed. I must add here that I am actually getting to quite like my haematologist, but I do find it very curious that she seems so unaware of patients suffering the sort of symptom burden and side effects of medication that we often talk about on this forum.

I have been trying to understand why this might be, and do wonder if she is so convinced that there are no side effects or symptoms that, when a person claims to be suffering them, she completely discounts this and blames it on something else, thus her view that no one experiences these things continues without missing a beat, like a splendid ship under full sail, cutting a path through the waves of a vast ocean! (Ha, I'm starting to wax poetical... must be the end of the day!)

Look, here's the thing, at some point we have to make a choice, we can believe the evidence of our own eyes and experience, or be frazzled and upset by taking to heart what a haematologist says.

I have no doubt at all that your ET and the HU you take for it causes you to suffer badly from fatigue, this has also been my own experience. My fatigue burden is so bad that I could not hold down regular work to save my life. I do what I can working from home in my pottery studio, and try to maintain my sense of humour when ever possible.

Very Kind Thoughts to you. I realise you must be going through a very difficult time.

Peter

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Hi there. Do you know? I have decided that this is an agreement amongst haema. to tell everyone the same to cover them in case they give different responses. Without fail, every side effect, symptom or whatever it may be, that I mentioned (in the earlier days) to mine was met with...that's nothing to do with this. Go to your GP. I don't because they have no knowledge or research experience into ET or MPNs in general. I tend to consider how many others on here mention the same symptoms and wrk it out for myself. I stopped, long ago wondering which is causing them, the condition or the drug.?

I have so many symptoms it's ridiculous. As far as I'm aware, fatigue is a symptom of both.

I now know that my haema is there to do two things, look at 2 parts of my blood tests and write another prescription! Personally, I find trying to work these things out is every bit as stressful as trying to continue with keeping going with everything. Finis! Love and hugs. x

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Thank you for your kind words, at times I do question well may be it is in my head. Soooooo good to hear others struggle too.

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Surely, the disease causes the fatigue. The hydroxy hopefully controls the blood levels and therefore combats the fatigue?

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Hi, no this was not the case for me. My fatigue was due to the Hydroxyurea and when I stopped it my fatigue disappeared.

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I think the trouble is the disease can cause fatigue, but the drugs that are used to fight it also can cause fatigue as a side effect in some people, so you have a combination of both. For some strange reason medical professionals seem to be in two camps over this, some who readily acknowledge it, and others who don't. I find that hard to understand as it seems like there is a great deal of good evidence for fatigue, but I accept that some people see the world differently.

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Maybe they don't think our fatigue is something that should bother them. They haven't felt it you see! They are more concerned about platelets etc.

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Ok, I accept that. People are so different as well. I don't like taking hydroxy but have only had minimal side effects so far since 2013. As I also lead an active life (hill walking, tennis, golf, exercise at home, avoid using car if distance less than a mile), I do not currently suffer from fatigue at age of 66. Fingers crossed. By the way, my haematologist (Dr Francis at Sheffield Hallamshire Hospital) has increased my hydroxy a bit rather than send me for my usual venesection, in response to new guidelines. Although I am in good shape, as I am over 65, it is now recommended not to use venesection if more than three are needed per year. See file:///D:/Users/mesh%20user/Documents/A%20-%20MISCELLANEOUS/Health/PV%20Guidelines%20Treatment%202018%2011.pdf The key finding seems to be "Randomised trial data supports that venesection of 200–500 ml blood at intervals suitable for patient size/tolerability should be used to achieve and maintain a Hct of <0·45 (Marchioli et al, 2013). In low risk patients this is usually adequate to maintain target Hct. Where frequent venesection is needed to achieve this target then an alternative approach using a cytoreductive agent may need to be considered. High levels of venesection requirement have been reported to have an association with higher thrombosis risk in patients on HC, specifically in those patients requiring 3 or more venesections per year (Alvarez‐Larrán et al, 2017)." I will post the info about these new guidelines separately as a new item, I think, because it is an important document.

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Sorry, correct URL is See onlinelibrary.wiley.com/doi...

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Hi Bob,

You are not alone in having a hematologist who is misinformed about the 'quality of life' impacts of ET - it makes my ET enriched blood boil! There is an article by Professor Ruben Mesa, who is acknowledged to be one of the foremost MPN specialists in USA, which identified that whereas 64% of ET patients report fatigue as a problem only 17% of doctors recognised it (http://www.bloodjournal.org/content/114/22/2904?sso-checked=true) That was 10 years ago, and not much has changed since. I was at an MPN Patients Forum in Oxford recently where there was a show of hands for who thought fatigue was the biggest impact on ET patients - and just about every hand went up!

It's frustrating, but because MPNs are relatively rare blood diseases, it is likely that we will have to live with this lack of awareness by our doctors. My personal view is that so long as the medications are keeping ET under control, I just bite my tongue and nod politely to my hemos, but if I start to see any signs of deterioration I shall request a referral to an MPN specialist.

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Thank you for your reply, so good to hear. I too, bite my tongue but then go home and the self doubt kicks in. I will take a look at the link. Many thanks

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Hi Bob , Whilst I agree its a bit academic if the fatigue is a result of the Hydoxy or a direct result of the ET you certainly get it with this disease, I have had ET now for 30 years and have constantly battled with fatigue. not so bad now I have retired as I have a sleep in the afternoon.

all the best Town crier

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Can I ask what age you were diagnosed, and how long you worked? I have had ET for nearly 20 years. I asked the haematologist if she would support my application to retire through ill health, because the platelets are now within a normal range as she is just treating the blood cells she is unable to do this. Thank you for replying

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Hi Bob , I had some serious problems in 1986 but my Gp failed to diagnose it despite a blood technician writing myloperitive disease on the form. I went another 10 years and was formerly diagnosed in 1996 with anew GP . However I had put 15% of f income into an AVC. pension I had a tough job as chief Engineer but eventually I put myself forward repeatedly for redundancy and eventually went in 2000 age 55 , but with no help from the state. Bit tough at first financially but did a few part time jobs to tied thing over . I am now 74 still do loads of voluntary work and keep reasonably well. Have outlived all my healthy college mates now. Hope this helps

yours Town crier

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It helps enormously thank you so much

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Me too.ET Jak2 pos 2009. Must pace and afternoon nap

Regards Lav007

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Hi Bobythecob

This is from the MPN Voice website:

"Increased fatigue - Hydroxycarbamide can increase fatigue. However, it is sometimes difficult to know whether the drug itself is causing the fatigue as feeling tired is also a symptom of MPNs."

I was on watch and wait with just aspirin I'm ET Jak2+, but started Hydroxy 6 weeks ago. The fatigue I experience has increased since being on Hydroxy. I find I'm more sluggish when I don't keep well hydrated.

I was only diagnosed with ET a year ago, but when my records were checked, my platelet level had been over 450 for 15 years and no one noticed, which I've learnt many here have experienced too.

I've cut my working hours a little, which is helping, it means I can take an afternoon nap, I'm 62.

I wish you well, isn't it great to have this forum and hear directly from others who know first hand the effects of MPNs, it's reassured me that I'm not alone on our MPN journey.

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Thank you for your kind words, good to hear from you

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Hi, 450 platelets is really "normal" considering. If you have not other blood counts elevated, I think your platelets are sleeping as they say and you should not "wake them up". I wish I had your luck. I have PV and am on venesections and aspirin.

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Hi Kelly, I hope your treatment is helping. Can you explain what happens at a venesection? Do you have them often?

My platelets had risen to 600+ a few weeks ago, so I've been taking 500mg of Hydroxy a day.

I hope you're okay, sending good wishes to you x

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Hi that is different but even 600 is low in my opinion to start Hydroxyurea. I would wait and see. Some doctors are very keen on giving it.

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I am grateful that we are all communicating about this. In a way, blood cancer is an invisible disease and if we appear normal or act normal people assume everything is fine. Well, I can understand why the general public may feel that way. But, medical professionals (who are treating MPN’s) have no excuse for invalidating your symptoms. It seems that some of these “professionals” lack empathy, or they are ignorant of the manifestations of MPN’s. If they don’t understand the basics of this type of serious cancer may be you can switch to a hematologist/oncologist who does know. Yes, medications and cancer can cause fatigue similar to the flu. Many people with the flu just stay in bed and don’t go to work that day because they feel sick.

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As soon as I read your post my blood began to boil. I know ET/PV is quite rare but if any clinician does not know much, or anything, about the condition then they should be honest enough to admit it and then wise enough to listen. Please don’t tell me I shouldn’t have brain fog, I shouldn’t feel dizzy, I shouldn’t be exhausted. It is me living with the condition so please do two things. Firstly, listen to me, second go and look up the condition before you knock me and my symptoms down.

When I had my second TIA the neurologist asked me why I thought it was brought on because of PV. I asked him why PV caused dizziness, fatigue, and all the other symptoms associated with it and he just shrugged his shoulders.

I had to see my new GP for the first time 2 weeks ago. Because I suffer with bad dizziness I use a rollator to steady myself when I am out. When she saw my rollator she asked why I use it and when I told her I have PV and associated dizziness she just accepted it, no questions and no disbelief. It was really refreshing.

Next time you present yourself to a medical professional who guffaws at your symptoms, don’t let him/her. You put your foot down and ask them to look up the definitions and symptoms associated with it before they shrug you off.

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Thank you for your reply, I almost feel as though I do not have enough energy to take on this argument and feel so grateful and reassured from the response I have had. Take care

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What a load of rubbish. For me fatigue is THE worst symptom, and why I went to the GP in the first place.

Fortunately my haematologist recognises this as a symptom. However when I first went (3 years ago) he did say that the bone pain I get had nothing to do with the ET, but last time I went he agreed that it was?

In my opinion it’s a very misunderstood disease, partly due to lack of research, even in the haematology world.

It’s frustrating!

Hope you feel a little less fatigued soon

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Thank you, I have made so many adjustments trying to cope, kind words and encouragement really appreciated

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So many non-MPN people also suffer from fatigue and there could be a thousand reasons for it, so I can understand why a haematologist would dismiss HU causing fatigue, but obviously HU is toxic and one of many contributors to fatigue.

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I have just sent a reply to stillkicking re this. If it's available to you take a look. We all seem to get the same responses. Mine is there to write the next prescription and according to him, nothing I tell him i'm experiencing has anything to do with the condition or the drug. He is not interested.

The only consultant I met who was willing to take an interest, be informed and consider symptoms was Mr Butt in Liverpool I asked for a second opinion not long after my diagnosis and he was amazing. I told him a symptom I was getting and he told me he had never heard of that in relation to the drug. He looked it up there and then and said, 'I learn so much about this from my patients, I had no idea. Yes, you're right, it's a side effect of Pegasys. I didn't know that and i've never come across it before.'

Special man. I hope you can put aside your stresses worrying about where each symptom comes from, just look on here and see if others are having the same symptom and know for yourself that it is one or the other; condition or drug. It doesn't really matter which one. If you are responding positively to treatment, it's a good thing. If yo can cope with the side effects, even better. I couldn't live with the way I felt on hydroxy but although there are many with Pegasys, I can overcome most of them most of the time. All the very best. I hope you can chill a little and put your worries aside.

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Thank you, I saw Mr Butt when he worked at Arrowe Park hospital, glad he was able to listen and acknowledge your experience.

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I have been on HU for two months. At first I was taking a pill in the morning and one at night. I felt like a Zombie after the morning dose. A Specialist at Dana Farber told me to try taking both pills before bed. That has made a huge difference. I sleep better and feel great during the day. I do notice that if I’m not drinking enough water the fatigue does set in. Lots of water, daily exercise, and only taking pills at night have me feeling better than I have in years. My platelets are down to around 400 from 950 in two months. So far so good.....

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I was diagnosed with fibromyalgia in my 30’s which caused fatigue, brain fog, and muscle pain. At the time I was married, Working and raising two children. At 52 I was diagnosed with ET when I went in to see my gp for chronic headaches. My hematologist immediately put me on hydroxy. My headaches went away but the fatigue, dizziness, and brain fog got much worse. I agree with the others, fatigue is a major factor in mpns.

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Glad to hear you have overcome some of the side effects. Take care

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"Fatigue" is a common report for people with MPNs. Listed side effects of hydroxyurea include: malaise, flu-like symptoms, drowsiness, dyspnea (shortness of breath). It is important to understand that HU is not a benign substance. Like many forms of chemotherapy, it is a toxin. While it is the first line treatment for ET/PV, HU is therapeutically weak - so near toxic levels are often needed to get the desired effect. While many people can tolerate HU and benefit from it, not everyone can. Unfortunately, many hematologists lack experience with MPNs and the consequences of the meds used to treat, Consultation with a true MPN expert is a really good idea if you have not already done that. Here is a link to some patient-recommended MPN expert docs mpnforum.com/list-hem/ . Hope this helps. All the best to you.

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Thank you for the link to MPN Drs, and your kind words

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Hi Bob, I have PV Jak2 neg. I also suffer from chronic fatigue, this tends to be worse sometimes than others. I am not on HU at this time but as my sympton burden ie. fatigue and bone pain has worsened over the last 12 months this is going to be reviewed. Fatigue is a classic sympton of MPN's from what I read on this forum.

It is my own experience that most GP's do not understand these conditions. and even some Haemo's are not fully aware of how of the many symptoms which can be, but not always are associated with the condition in individual Patients.

In my own case it is as I mentioned earlier fatigue and also severe pain and some mild (for now) Brain Fog.

All the best to you Bob.

Gardy

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Hi Bobthecob,

I’ve had it since 2010. Meds since 2017. I get rid of fatigue by a good clean diet, light detox help and I take CoQ10 daily. That latter was really important. Helps the mitochondria in our cells do there job throughout the whole body. 🙂

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The first thing I am asked at my mpn specialist visit is how is my fatigue level. I have very little right now. Try to exercise regularly, seems to help as per most posts I have read about exercise and ET. I am 69 ET Jak2+ and take only aspirin. I have read posts about people with severe fatigue being prescribed adderal or ritalin for fatigue with some saying it worked well. Good luck to you.

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Thank you for reading and replying

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Why do u only have to take aspirin. Does it seem to work and how long have you been doing this

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Why is this a classic response from Haemos? 🤔 Hubby has ET/PV & under a specialist centre & still had the same response. It was the fatigue that made him go to be checked at the GPs but his Haemo said it wasn't related to his diagnosis & referred him to CFS/ME. He left the consultation feeling very low & I had to show him posts in the forum & pages in the literature I had to show him its really nothing else. He felt like he'd lived 47 years with no problems & suddenly everything was wrong. When he had his referral to CFS/ME the nurse couldn't understand why he'd been referred, she said having researched MPN she was reluctant to diagnosis CFS or ME as fatigue is a major part of MPN & while his blood counts weren't being controlled she had no reason to doubt it was the MPN causing the extreme fatigue. She agreed he had chronic fatigue but not the syndrome as his diagnosis of MPN proved what was the cause. He has had support to help manage the fatigue which really is a reduction in working hours (sadly work were so awful he doesn't work now) & pacing what he does. Life is very much about planning ahead. So we are away in Scotland, some 450 miles from home & we drove up in 2 days as even as a passenger he can't cope with that far in one day. He also can't sit for that long due to his hip & leg pain. We find ways to make the best of it so we can still have a good life but would be nice for Haemo to be more supportive.

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It certainly is life changing, I am really sorry to hear of your struggles. I truly am so thank ful for this forum, whenever I fell overwhelmed I can usually find something here to help. Good to hear you are making the best of things, take care

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Hi Bob - After my last Haem appointment - (a consultant I'd never seen before) wrote that I was 'asymptomatic' and perfectly anaemic. My HCT was at .468 and he stated that I didn't need a venesection. I had told him at the appointment that I was fatigued, suffering with constant headaches, had a number of unexplained nose bleeds and sore joints and muscles... So I now know that he doesn't consider any of my symptoms to be PRV related.

He questioned whether I had had a 'full stroke' - even though my medical notes state that I did and I have the MRI scan results and a right leg I can barely feel to prove it.

I've got my next appointment coming up in two weeks time and I swear if I walk into the room and see him sat there, I will walk right back out again without saying a word.

All the best. Karina

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How frustrating, I think I would begin to lose confidence in some of the medical professionals treating this disease. Thank goodness we have each other on this site. Take care and stay in touch, I will keep my fingers crossed that you do not have to see that consultant again .

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I couldn’t understand why I was so tired. I even bought an iron tonic from the Pharmacist prior to investigations!!

Someone posted an article on this site about fatigue. It was a very interesting read. Scientists have proved it’s a medical fact. It’s all to do with the mitochondria.

Also one of my biggest factors is a low heamoglobin due to the meds.

Get another heamo!!!

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Was this the one.

drmyhill.co.uk/wiki/CFS/ME_...

Peter

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No, I’m away at the moment. So I’ll dig it out on my return. If you don’t hear from me then prompt me. I was so impressed I printed off the article.

It said that a scientific study had come to the conclusion that the mitochondria in people suffering from chronic fatigue takes a lot longer to recover than in those who are ‘tired’.

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They don't have it we do. We can't all be wrong.It's a very common side effect of et and widely acknowledged by doctors who know what they're talking about.

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I also was told fatigue isnt from my ET is was just my lifestyle. My lifestyle hasnt changed.

It is so frustrating that some haematologists dont listen to their patients.

I work in a health care enviroment and when patients tell me their symptoms i never dismiss them because that is how they feel.

Take care

J x

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I have had lots of discussions at my clinic visits about fatigue, with varied responses.

Simply put there idoes not appear to be enough scientific research done on fatigue and MPNs. With out this data most professionals won't acknowledge fatigue is definitely an issue.

However I have found that anyone who has worked with patients of MPNs say that the issue of fatigue is something there hear all the time.

You know or mores the point are discovering how fatigue impacts you personally. Be patient with it.

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My husband has post PV MF he's really struggled with exhaustion . He was almost on his knees he started ruxolitanib Feb 22ndvand he's got no exhaustion/fatigue he's not had a venesection since January 18th so he's doing loads better!

Tracey

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Hi Bob,

see attached survey if it will let you open it

Regards Lav007

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