This is possibly a really stupid question...
Posted , 5 users are following.
I was diagnosed with polycythaemia vera in the spring so I am a real beginner here.
I have been reading the various postson this forum and I have been surprised at the widely differing experiences of other people who have this condition.
My question is this. Is it possible for one person, over the course of their lifetime, to only have a light version of it while another person gets a severe version of it? Or does the illness develop from light to severe over time with symptoms increasing in their effect on the body and the number of symptoms increasing over time?
0 likes, 5 replies
Orseblue angela_o..o
Posted
I was told my blood been bad since 2005 but my heavy periods masked it, and my GP never picked up on it.
I belive people can have different levels of the PV.
Some have blood clotting issues, enlarged spleen, itchy skin, redness etc.
Some have lots of symptoms others just some.
I'm having more issues now, but also aware of it now, 10 years ago I didn't know why my head hurt etc.
keith28441 angela_o..o
Posted
PV does affect people in different ways, no one person is necessarily the same. PV usually develops slowly over time so as the years go by drugs and treatments are adapted accordingly. Some people for example can have mild symptoms and require just venesection for many years, whilst others may require venesection and drugs such as Hydroxyurea to help better control their symptoms. PV is not a straightforward condition, there are many variables. I for example also have high platelets and white blood cells, which is why my Haematologist now wants to put me on Hyroxyurea in addition to venesection but not all PV sufferers have high platelet counts. That’s not to say they won’t be raised at some time in the future though. I experience migraines with aura, fatigue and tinnitus but I do not suffer from an enlarged spleen, gout or pruritus. As mentioned, it’s a complex disease and most GP’s/Family Physicians are not that familiar with PV which is why treatment is referred to Haematologists.
PV can also progress to other Myeloproliferative Neoplasms, which is what PV is. Some people’s condition have for example, progressed to Myelofibrosis (happens in 10%-15% of cases depending on what information you read/receive). This is known as the “spent stage” of PV where your body no longer produces enough red blood cells and/or platelets so the opposite happens and treatment here is not so much venesections but blood transfusions and myelosuppressive drug treatment . This is not meant to scare you but merely to inform you of just how many variances there can be with PV. As many other people have commented in this forum, people live with PV for many many years but each person’s PV is very much unique to them both in how they are managed and how they respond to treatment.
Hope this information helps.
Keith
angela_o..o keith28441
Posted
Yes, thank you for that. Confusing but understandable!
I have just been for a rather unsatisfying appointment with one of the hospital haematologists. There are about five or six of them and I get a different one each time. He is the least empathetic of them and I met him for the first time today.
I had my 65th birthday recently. I was diagnosed in April. My symptoms have never been strong enough to warrant my feeling that they were serious and I only went to see a doctor at the urging of others. When I was first diagnosed my Hb was 188, my wcc was 14.3, my platelets were 621 and my haematocrit was 0.59.
I have had daily aspirin since then and 5 venesections, the last being a month ago. Today my Hb was 134, my wcc 12.1, my platelets 652 and my haematocrit 0.44.
I feel fine. Apart from a short snooze some afternoons I feel almost normal. The side effects of hydroxyurea I have read about and I have resisited going onto it.
Today the haematologist was very very insistent that I take the chemo tablets. I almost expected him to say that they were going to bid me farewell if I didn't take them. My reasons for not taking them were dismissed as insufficient. I have a university degree (not in sciences) and resent being called, to all intents and purposes, a reckless fool.
Does anyone else have this experience of the NHS and its procedures? I know that they have a duty to recommend. I didn't know that they have a right to insist.
keith28441 angela_o..o
Posted
Yes, I have experience of the good old NHS. I am perhaps a little more fortunate in that my Haematologist is a little more understanding. I only ever see the same Consultant, I am under his care and no other. From past experience, I have found that some Hospital Consultants and Doctors can sometimes come across as pompous, even rude and they could work on “their bedside manner” a bit. I am treated at Milton Keynes University Hospital and I have to say they are good although I have heard some other hospitals are not so good.
My Consultant is currently urging me to go on the Chemo drug Hydroxyurea in order to better control my platelets and I suspect (although I am no Doctor) that this is why your Consultant(s) want to put you on it as well in addition to better controlling your other symptoms. My Haematologist mentioned to me that if I was over 60, he would probably have put me on Hydroxyurea immediately but I am still a “baby” ….well…..OK perhaps not, I am now 53 but still young at heart!! I too mentioned the possible side effects but he said that I would be on low dosage so didn’t believe I would suffer any side effects. He mentioned however that once on the drug, I couldn’t come off it so it might be worth you bringing this up in conversation when you next see your Haematologist. Although my Consultant has suggested I go on the drug, he is not and cannot insist. I am quite sure that they have to respect the decision of the patient. Obviously, it is always important and indeed prudent to take on-board any advice given by any medical professional, (as I am sure you know) so have a good think about it and way up the pros and cons of how this will better (or otherwise) affect you.
By the way, I too have a snooze most afternoons for a couple of hours, it works wonders for me!
All the very best to you Angela
Keith
angela_o..o keith28441
Posted
Thank you so much for your long reply.
One of the earlier consultants, when I said that I wasn't at all keen to go on the drug but might be persuaded, said that I could come off it at any time if I wished to. But yours says the opposite. So there's a funny thing.
I got the distinct impression today that this consultant was doing "housekeeping" for the NHS and trying to cut down on their costs. He is the first to have not asked me how I was doing since my last visit. I presume that he didn't want to hear that I was doing just fine, thanks. He was the first to press me repeatedly to take the drug despite my having told three others that I had done my research and come to my own conclusions.He was the first one to ever acknowledge the existence of my silent chaperone and to try to draw him into the conversation in order to get him to persuade me to take it. One sentence made me think it was a money saving exercise rather than an effort to help me personally. He told me, I think by way of making me see some advantage in taking it, that people who do take it only have to go for consultations every three months and don't need venesections. I saw the comparative expense of my monthly meetings and soon to be bi-monthly venesections and picked up a rather different message from the intended one.
He suggested that I have a further venesection in five weeks' time but mysteriously the clinic turned out to be fully booked and I have been left with the promise of a letter from "the secretary" giving me a date for it.
I have friends who are caring for husbands with Alzheimer's and Parkinson's. There are thousands worse off. I take each day as it comes.
All the best.