Quick move to hydroxy - should I wait for venesection effects
Posted , 9 users are following.
Hi. I was diagnosed with probable PV on 23.1.18 with a haematocrit level of 63%. Was started on immediate aspirin and weekly venesections. By 22nd Feb it was down to 51% and heading down further the following week. At my Consultant appointment PV was confirmed. I was told that the venesections were not working for me, prescribed with hydroxycarbomide and bi-weekly venesections. My question is whether I should take the hydroxy straight away as according the results from the haematology unit, the venesections are working well. I would prefer to wait for medication intervention until it was confirmed absolutely necessary by the venesection results. Do I just take the medication or ask for another appointment or second opinion to decide on the way forward? Thank you for your comments - really appreciate this forum as I deal with my diagnosis.
0 likes, 72 replies
angela_o..o sue41760
Posted
I understand from the way that you write the date that you are in UK.
I am a bit confused. Is your consultant not part and parcel of the haematology unit?
Why the conflicting opinions about whether the venesections are working well or not?
I have refused to take the hydroxycarbamide since I was diagnosed two years ago (it is the course of choice for people over 65 where I live in England but I have always hated drugs of any kind and don’t see why I should change my mind now) so I just take aspirin (under duress) and have venesections about every other month now. Are you over 65? The consultant may just be “following orders” from the NHS by prescribing the drug as there is apparently a higher risk of having a stroke or heart attack if you are over 65 and opt not to take them.
One more thing confuses me. Have you been handed the hydroxycarbamide and just told to take them whenever you want? My hospital haematology unit would, if I had let them, administered the first course, along with an anti-emetic, while I was sitting in front of them. I would not have been given any choice about waiting to see if the venesections were working or not.
Finally, you are lucky to have been diagnosed. Such a high haematocrit is very serious. It does seem to be falling quite well, to my untrained eye. Mine hovers around 47% after two years and, although the staff keep on at me to give in and take the drugs, I personally am happy with that reading.
It is all a case of pros and cons, weighing up how you feel about things. Nobody can make you do anything that makes you feel uncomfortable. All they can do is offer you the benefit of their experience. In the end, it is up to you.
sue41760 angela_o..o
Posted
Yes I am in England. I am only 53 so am keen to avoid drugs at present if possible. I have my hydroxy and was expecting to just take them daily but am obviously questioning whether I should and concerned about conflicting opinions - hence the questions on this post.
Very helpful reply - thank you.
Zapamania sue41760
Posted
Hi Sue, I'm in the US. You haven't told us what your other numbers are. Platelets, RBC, hemaglobin. Your hematocrit is very high for a woman they want it to be 42 or under. Phlebotomies would lower it, but raise your platelets. As far as the HU goes, the dosage has to be monitored quite closely, henceforth more cbcs. I couldn't tolerate it at all, only lasted 5 days. Everyone is different. There are some people who take it for years without a problem. You are young, so I can understand your reluctance. I think you need to have another discussion with your dr about the pros and cons before making a decision. Are you symptomatic? Itching, night sweats, ocular migraines?
angela_o..o sue41760
Posted
Maybe there are other things in your blood test results that are pushing the consultant towards the drug regime. Feel free to ask him/her as many questions as you would like. It’s your life and your body. I have found that my showing an interest in the results, albeit a very simple, ignorant and inexpert interest, most of the consultants who see me are very happy to explain things to me and none of them are in the least condescending in their replies.
Take your time to make a descision. Don’t feel pressured or rushed into things. Now that you are being treated and your blood results seem to be showing definite improvement you can relax and ponder.
Lots of people on here have been in your shoes, We all react differently to PV. We all have our own stories to tell and our own answers to the problems that we have faced. There is no one perfect answer.
good luck.
angela_o..o sue41760
Posted
Maybe there are other things in your blood test results that are pushing the consultant towards the drug regime. Feel free to ask him/her as many questions as you would like. It’s your life and your body. I have found that my showing an interest in the results, albeit a very simple, ignorant and inexpert interest, most of the consultants who see me are very happy to explain things to me and none of them are in the least condescending in their replies.
Take your time to make a descision. Don’t feel pressured or rushed into things. Now that you are being treated and your blood results seem to be showing definite improvement you can relax and ponder.
Lots of people on here have been in your shoes, We all react differently to PV. We all have our own stories to tell and our own answers to the problems that we have faced. There is no one perfect answer.
good luck.
angela_o..o sue41760
Posted
Old age.
Zapamania angela_o..o
Posted
Angela too funny welcome to the club😔
peter98873 Zapamania
Posted
Yes, Angela is quite a card I agree but she does come up with some decent opinions. I was about to contact you on the other circuit but here you are so I will say that we have been snowed under here in UK which has kept us occupied. A thaw is already happening. This is the month of your hospital appt. Linda so I hope all is arranged and that you are ready for the moment. Everything here going along well with the Jakavi really making its weight. Very pleased so far. Any developments on the pegasus treatment ? Good wishes.
Peter.
angela_o..o Zapamania
Posted
Peter must, I think, if I have got a grip on whereabouts he lives, have had worse snow than I have even though I am higher up and further north. But it only takes an inch of the stuff to send the entire population into a blind panic. I have been reading about Massachusetts’ weather woes and they seem much worse than ours. Still, spring must be on its way as the birds are all beginning to sing their spring songs. Happy days.
Zapamania angela_o..o
Posted
Hi Angela thanks for your good wishes. I live in New Jersey very close to New York City, about 20 minutes away. We had a storm yesterday with rain, sleet, high winds. Spring better spring soon, I've had enough. I haven't noticed any birds singing lol take care Zap
peter98873 angela_o..o
Posted
Hello Angela,
You are right about the weather conditions. Here in West Country we had no snow whatsoever until last Friday and then it all came swiftly with strong winds and that was it. With all the hills around this froze solid causing widespread disruption. Today it has with modest temperatures, started thawing. It is the ice that causes the difficulties here not so much the snow which will affect the moors particularly. I think it is the luck of the draw. I am just pleased I don't have to make the hospital at this time. I well remember April/May many years ago where I found 4-5 feet of it in N.Yorks. Hope you continue to stay well with your PV. I have found the Jakavi very supportive with good results so far. Still early days yet.
I do keep up with your forum entries - very good and particularly relevant where the ladies are concerned. Keep well.
Peter.
angela_o..o peter98873
Posted
I counted fifteen blackbirds outside the kitchen window this morning. Twelve male and three female. It’s going to be an interesting springtime when the hormones kick in.
It’s been thick white fog here all day. Which is quite good because it hides the snow. All getting a bit tedious now, not least the endless news items on TV about it. The slimos may have 150 words for it but there are only so many things you can say about water in its solid state, after all.
Good to hear that your treatment is going smoothly. Long may it continue.
angela_o..o
Posted
Eskimos, I meant. Apologies to the Eskimos.
peter98873 angela_o..o
Posted
Hi Angela,
Nice to hear from you again. We are almost clear of the snow now in my parts. Yes, slimos may be a new word but what the heck, there's enough of these around nowadays particularly with the modern young. With the broadcasters everything is overkill, I think we could do with a new word to describe them. I have also noticed the bird activity too, they are very early this year. Keep comfortable and healthy.
Peter.
macas02 peter98873
Posted
peter98873 macas02
Posted
I think you will find holiday insurance for PV can be something of a problem but it depends primarily on how long you have had the illness. But I believe it is available via specialist insurance providers. There are one or two companies that are not pre-occupied with medical conditions and the best idea is to search the internet with your details and see what arises. If you have ever seen the TV programme of the customer services adviser Martin Lewis he often offers advice on this type of enquiry via his web-site. Worth a try. Your illness should be mentioned when dealing with this type of insurance. Maybe you will not be diagnosed with PV and insurance to cover this will not be necessary. I know of one or two cases where people with short holiday requirements seem to be favourably treated. This question arises from time to time on this forum but it can be personal if the illness is of long-standing. It perhaps is that another person on this forum may be better placed to deal with your query, but specific web-site details are not given because of rule restrictions that operate here. Let us know how you get on, I am sure others will face the same problems you are concerned with and be interested in the outcome. There is plenty of good advice on PV available here from others should your diagnosis prove positive.
Good luck.
Peter.
macas02 peter98873
Posted
Thank you Peter. My husband is having a CT scan tomorrow and we I'll see Haemotolgist Wednesday for results. He expects it to be pv..bit scary but has helped me to read questions on this forum. We have two holidays booked for this year and I did wonder if our insurance would be ok.but for the moment we will get the tests done.
Thank you again
mary
peter98873 macas02
Posted
Hi Mary,
You'll probably have blood tests taken by the haematologist to ascertain the state of your blood counts.
Nothing to be concerned about really. These tests will indicate just what you are suffering from, if anything, and will give the doctor what he needs to prescribe and deal with any illness shown. I can only say that a CT scan can be for anything and is not normally used at this point. Probably just routine. Take things easy, if PV is discovered it can be treated with current medicines etc. Just see what occurs. Best of luck.
Peter.
macas02 peter98873
Posted
Hello Peter Thank you for your message. I can now update you. Firstly it's my husband that has the problem. He had a CT scan earlier this week to check his kidneys and liver thankfully that was clear. He has been diagnosed with polycythemia and he had a venesection straight away with the expectation on another 3 over the next few weeks. Still waiting to hear if he had the gene (can't remember the name).
we spoke to our holiday insurers and they have accepted it and allowed travel.
i a. Using another forum on patient uk for myself and it has been great, I will keep checking this forum for my husband (he hates computers😬
thank you agsin
Mary
peter98873 macas02
Posted
Hi Mary,
Sorry to hear that your husband has PV. The mutation is called JAK2 which concerns the gene involved. Just deal with one problem at a time and see how the venesections turn out for you. These should indicate the type of problem he has and the JAK2 follows on perhaps afterwards when any medication may need reviewing. Rely on the Haematologist who will supervise your husband's treatment from now on. If he hasn't offered you any booklets on PV ask him if he can supply any for these can be useful to understand the illness. Your travel insurance seems to have been solved. I did not think it would proves to be a problem. Don't forget your EHIC card though. Details are on internet for full facts of scheme. Type this synonym into your search engine if you don't already have the cards - one for each of you. These supplement the travel insurance and operate within NHS. Will keep an eye open for anything you need here. There are a number of others who can help here also. Wish you both well.
Peter.
peter98873 macas02
Posted
Referring to my last message to you, I mentioned the EHIC medical card. Just enter EHIC in your search engine for the government web-site and only open the official site to make your application (for both of you) as most other sites require payment. It should be free as these other sites are parasitical.
If you already have cards you can ignore this but ensure your card is not out-of-date. Full details are on the web-site. Takes about 10 days to arrive after application. Good luck.
Peter.
macas02 peter98873
Posted
i really do appreciate your help and kindness.
Mary