Fatigue with PV

Hello Sharon,

I’m not on any drugs other than daily aspirin and I have venesections every two or three months. I have been diagnosed now for about two years,

I have experienced the fatigue. Either just total exhaustion which lasts for hours or one minute I’m wide awake and the next fast asleep.

This is a weird disease. All I can say, from my own experience so far, is that your fatigue will pass. Maybe in a few weeks or months, but it will pass. I went through it and now it’s gone. Now I am going through the itching phase. Every morning after a shower I itch uncontrollably for about two hours. Just as I think I’m going to go crazy, it stops. All things must pass, as my old granny used to say.

Hi

I am abroad so my reply was lost wonder if I can do it now let’s see! 

Ah yes it worked I will carry on . I have had PV for five years firstly just having a vienession three/ four times a year . Then I started on  hydroxy my body will only tolerate 2 a day The haematologist  has adjusted it over the years up and down,  now I feel this is the right dose for me . Everyone is different I luckily have not suffered from fatigue or itchyness like some of you . Keep in touch with your haemotologist  

I can ring mine,and get a reply within the day,  that’s the south of uk. Hopefully you can do so as well . I know people who have had the disease for 30/40 years some are born with it, it is manageable but not curable yet. Tests are ongoing in many hospitals so who knows one day they may . Xxxx

I don’t think I have ever been told. Nor have I ever thought to ask. Sorry.

Hi Sharon

This is currently me exactly. Whilst it's not nice to be going through, it's reassuring to know we're not alone!  I have only been diagnosed for 8 months and currently take aspirin and regular venesections. My ferritin level is consistently 6/7. 

It is interesting to read that you take hydroxy and are still tired. I am currently resisting the hydroxy but my haematologist assures me that if I go onto it, my ferritin levels will recover and I will feel better????

I hope things work out for you. 

Sharon - 

I take 1000mg Hydroxyurea daily, as well as low dose aspirin daily. The last time my ferritin was checked it was at 7. 

Before starting hydroxyurea I had terrible fatigue, itching and vertigo, but the vertigo and itching have mostly gone away completely.  I continue to suffer fatigue, but it has decreased significantly, especially since my hydroxyurea was increased from 500 to 1000 mg daily.  My doctor says that he has to maintain me at an anemic level to combat the bad effects of the PV.  A couple of years ago I started walking every day for an hour and found that helped decrease my fatigue also, but whereas I used to get by on less than 6 hours sleep a night, now I need a solid 7 to 8 hours.  At least I'm not falling asleep at my desk at work like I was just 3 years ago before I started the hydroxy!

Good Luck!

- Chip

Hello Sharon,

From the replies you have received so far you will realise just what a variable disease this can be.  Each person must be treated individually and this is exposed in the medications etc that are prescribed.  Lethargy and tiredness are associated with PV and can generally be controlled by medicines but when anaemia is involved this can be a separate issue.  Personally I found that Hydroxycarbamide controlled these unwelcome symptoms quite well but one can become used to any drug and its effects diminish.  This will generally be countered by an increase in the the drug prescribed or by a change recommended by the doctor.  I have never been bothered by itchiness in the long time I have been diagnosed with PV so have never needed to deal with this aspect.  My PV has now progressed to MF and the drug I currently use has contained things very well.  I feel you should discuss your symptoms  with your haematologist in order to find what might be best for you.  Ferritin can be troublesome  for some but is often controlled by a change of diet or by drugs.  With a little care there should be good reason for you to achieve a degree of relief from your symptoms.  As already shown, there is plenty of experienced advice available on this forum which can help you find any answers.  Good luck.

Peter.

Sharon

Have you had your spleen examined of late? If it is enlarging then it is possible that you are developing Myelofibrosis (MF), but don’t worry as the spleen has to become massive before it becomes a real problem. The bad news is that the test for MF is a Bone Marrow Biopsy.

ItchyChris