Red areas on the back of my hands

Thanks Peter

Out of interest, I went to a dermatologist who researched it and said it was part of the condition. I also mentioned to my haemotologist on my last visit who told me to stop taking Alpurinol which I was taking as my uric acid levels were increasing. However I will raise it again at my next appointment. The minor problem is I live in Spain so I have to use an interpreter.

As you say, it's variable condition. I just wondered if anyone else had something similar.

Best wishes

David

Hi David,

I suffer from inherited gout and have done so for many years and have been prescribed Allopurinol to treat it again, for many years.  Gout is a known symptom connected with PV but like most other things associated with PV doesn't affect everybody.  My gout was known long before I was diagnosed with PV.

Allopurinol has proved to be a massive success in treating gout both for myself and many others I am aware of.  I would be very reluctant indeed to stop taking the daily dose so do bear this in mind when your doctor mentions it again.  This medication has kept the gout to a virtually non-existent level now for a long time.  I understand your feelings about the Spanish medical system having lived in that country for 2 years in times past.  You may be aware by now that PV is a progressive illness and a good haematologist is highly recommended.   Good wishes.

Peter. 

Hi Peter

Thanks for again for your reply. I was aware that PV was progressive but that treatment either blood letting (which I had initially) or Hydrea which I take now would help control the excess red blood cells. I know it isn't an easy illness to manage and presents differently in people.

Does the red blood cell production continue to increase or can it be stablised. Again I realize this is individual but you seem to have researched the illness well.

I take it you are now in the UK. Are you with the NHS for haematology treatment.

I wish you well with it and it's good to have someone to discuss it with.

Best wishes

David

Hi David,

Thank you for your message.  To answer your query about the red blood cell count.  You are correct in your views about the red cell count which is a primary cause of PV.  Any treatment offered is designed to stabilise this condition usually over the longer term.  The general aim is to thin the red cells to make up less than 45% of the blood.  Therefore the treatment forms an important calculation in each patient's condition.  Because PV is so rare each patient presents different symptoms for the haematologist and why so many initial tests are required to diagnose the disorder.  However platelet and haematocrit counts are also controlled in an effort to stabilise the disease (these are two main features, there are others).  When the platelet count is too high is when Hydroxycarbamide is usually used to reduce the red cell count and this drug affords a certain amount of success in the shorter term.  In my own case I was prescribed increasingly heavier dosage over a very long period and this eventually had a serious effect on my well being.  Fortunately by this time a newer dug, Ruxolitinib (Jakavi) became available following a full trial period and this seems to have reversed much of the ill effects produced by the Hydroxy. and I feel decidedly more normal now.  There is much I could explain further but as you say, it is a very complicated illness with much to consider.   I am no medical professional and any medical advice is best sought from your specialists  I was diagnosed with PV almost twenty years ago and because very little information was available about it, I made a concerted decision to investigate the disorder from a patients viewpoint to discover just what I was dealing with.  Following the diagnosis I realised that I had been affected by the symptoms of PV long beforehand but not so obvious as to require medical attention or concern.  My PV progressed to MF which is where I now stand but the Ruxolitinib seemingly has had a marked effect and my regular tests have been almost as normal for over a year.  Yes, I am in UK and a regular NHS patient.    Can I suggest you endeavour to obtain a booklet provided by Leukaemia Research on Myeloproliferative Disorders (MPN"s) which is full of useful information about PV etc, under which group it is included.  My Haematologist has also provided me with current booklets via the NHS on the MPN disorders.  Both I have found invaluable on this subject which is said to affect 3 people in 100,000 or thereabouts now.  If I can help further then use the forum for a response.  Best wishes for the future.

Peter.

Many thanks for your comprehensive reply. You have been really helpful.

As you are probably aware, in Spain they give you a blood test at the drop of a hat and my GP noticed the increase in my red blood count and referred me to a haematologist so I think I may have been diagnosed relatively early with the illness. Like you, I am trying to find out what I am dealing with for the future.

I will send of for the booklet you suggested and good luck with your health.

I hope we can stay in touch.

Best wishes

David

Hi David,

Once more, thank your your response.  My wife and I were very interested in sailboat cruising whilst in the UK and after years of visiting France, Channel Islands etc decided  to spread our wings and visit the Mediterranean.  Hence our time in Spain and also in many other places there over a ten year period.  We lived aboard and in wintertime used to tour inland so we acquired a good knowledge of the different countries visited including any medical facilities although we never needed them ourselves.  It was some years after our return to UK that I was diagnosed with PV with all its subsequent problems.  I was fortunate to to be referred to our local Haematology Unit which employs some very fine specialist doctors and this has proved beneficial.  It didn't take long for me to realise that PV was almost unknown anywhere and that instigated my personal interest in the disorder.  For your interest their are some very informed patients on this forum who also take a deep interest in PV.  They are situated about the globe mostly but contribute to the forum too.  They will be pleased to assist likewise and you will find just how PV is dealt with in other countries.  USA and UK seem to be the prominent centres.  However, do not exclude your own specialists as you will discover how important they can be.  I am quite well at this time and will obviously remain in touch here.   Good wishes for the future, keep well.

Peter.

Thanks for all your advice earlier this year and wishing you a happy christmas.

David

Thank you for your message and the Christmas wishes.  May I return these and wish you a comfortable future.  Do hope you succeeded in your quest to rectify your symptoms and am pleased I was able to assist.   The Ruxolitinib (Jakavi) is controlling my symptoms well.

Kind regards.

Peter.