Essential Thrombocythaemia

[Bobthecob]

I am new here so hello. I have had essential Thrombocythaemia since 2000 I am 56 years old. I work in a school and over the years have reduced my days from 5 to 3 then 2. My dose of Hydroxycarbamide has been increased since Christmas, I have always had fatigue but since dosage increase the symptoms of fatigue have increased. I have had five weeks off work and now "trying" a phased return and struggling. Does anyone else struggle with fatigue? Looking forward to hearing some response

[Kelly2]

Welcome. Yes especially in the afternoons it was terrible while I was on Hydroxyurea. Every inch of my body was aching with fatigue and sometimes I had to take painkillers which helped.

[mhos61]

Hi, and welcome to our forum.

Fatigue is one of the main symptoms that MPNers continually report. It’s hard to determine is it the disease, the medication or both. I suspect its the disease in most cases, but an increase in medication will have some short term impact too.

I presume there were changes in your bloods or symptoms for the increase in medication? If you haven’t had a recent bmb it might be a good idea to ask for one to check for any changes.

Mary

[Bobthecob in reply to mhos61]

Thank you for your reply, my platelets were just under 500 when hospital decided to increase the dose. Had a hospital appointment yesterday the higher Meds have brought the platelets down which I am told looks great on paper but I don't feel great. Had a spleen and abdominal scan to check there wasn't an underlying cause for the fatigue. Have you had the disease a long time?

[gset in reply to Bobthecob]

15 years and to start it was really bad until I learned my triggers, now Provided I eat properly, sleep 7 hours a night min and walk I feel good. Stress kills me though so if I have a stressful situation

I do whatever I can to reduce it or walk away if possible, although not always. I had to give up my career 5 years ago for part time work as 36,000 miles driving and 70 plus hours a week killed me. Part time is great, provided the employer doesn’t try to get a full week worth in 3 days as some have done to me! Best to work out what helps you maybe keep a note in a little book or on notes on mobile phone and you can look back and analyse what helps you feel better. Good luck

[mhos61 in reply to Bobthecob]

Hi again,

I am ET Jak2+ which was was picked up on a random blood test 3 years ago. My platelets were 500 and I was put on hydroxycarbamide due to being deemed high risk (60 yrs at the time).

Leading up to the diagnosis I did have fatigue, which I thought was due to age. For me, treatment with aspirin and hydroxycarbamide helped with this. I do still get the odd bout of fatigue which can be debilitating and strikes for no apparent reason. I work two days a week. If the pension age hadn’t been put up to 66 I would be retired now........

Hopefully as your body adjusts to the increased dose your fatigue may lessen.

Mary

[gset]

Hi there- sorry to hear of your fatigue . I was on the same drug for my ET for 10 years and found it was hard to decide if the fatigue was the condition or the drug or a combination of both. Around the diagnosis and start of treatment fatigue was worse and I think this was caused by the stress of those events. It got more manageable the more I managed my stress and also my attitude to the disease and treatment. I am 15 years since diagnosis and still find that any form of stress I am exposed to multiplies the fatigue. I can go from being great to not being able to do anything and sleeping really quickly. My remedy has been to reduce the number and type of stressful situations and to walk instead of try to run as I used to. Walking Is relaxing , keeps you fit and has been easier to incorporate into an ET life as when I ran or did the gym my fatigue sent me to sleep almost immediately. Not good as Inused tonfonthat before s workjng day! Walking doesn’t and it is still good Exercise as well as being able to fit it into busy lives. Good luck we are thinking of you.

[Bobthecob in reply to gset]

Thank you for your reply, good to hear you have managed to find a way to ease stress. I walk every day, it does help.

[stillkicking]

Hello Bobthecob,

Welcome to the forum. You have had ET longer than I have (I was diagnosed at the beginning of 2017), but I also have experienced increasing fatigue as the dosage of Hydroxyurea has been increased. It is impossible to really be sure if the drug or if the disease causes the fatigue, I am sure both contribute to it, but it is a very difficult thing to deal with, especially when it affects your work.

I am 60 now and when I have the energy to work it is as a potter. As I work from home, I have the luxury of being able to lie down if that is needed, or work a little one day, or not at all the next, you have a much more difficult situation with working at a school. Others will give helpful advice about exercise and drinking lots of water, both good things to do.

I'm in New Zealand so don't know the employment laws for the UK, but I know that there has been mention of employers obligations and so on at times on the forum, so someone might be able to give practical help if you are having any problems relating to your work place and employers expectations.

Kind Thoughts,

Peter

[Bobthecob in reply to stillkicking]

Thank you for your lovely reply, it is so good to hear that someone else feels as I do. Lovely to hear you can work from home and as a potter. Good luck and stay healthy

[Cja1956]

Hi, and welcome. Yes, fatigue is a big problem with these blood disorders. Medicine sometimes does make it worse but your body needs to adjust and after a time you should start feeling better. I was diagnosed 11 years ago with ET Jac2 positive And my hematologist has adjusted my medication several times over the years due to side effects. By the way, I was a teacher for many years but I couldn’t handle it anymore so now I work from home selling insurance.

[Bobthecob]

Hello there, thank you so much for your reply, I am jac2 positive, over the years I have tried Anegralide and Interferon have been back on Hydroxycarbamide for a number of years. As I said I really find fatigue debilitating, and will need to stay on a higher level of the drug, although the platelets have reduced the fatigue hasn't. So good to hear you found an income away from teaching. Take care

[Meatloaf9]

Hi, I have read on the MPN Research Foundation forum that some patients are being prescribed Ritalin or Adderal for the severe fatigue of their MPN. Some say that it makes them feel normal without any side effects. Just saying you might want to ask your hematologist about this and follow their advice.

[Bobthecob]

Hi Meatloaf9, thank you for the information and for taking the time to reply, I appreciate the information and will look into it. Take care