Hi, I am new to this as recently found out have PV, started by mentioning to GP about terrible itching after showering, this had been going on for quite some time poss couple years on and off but had got worse and never realised it could be serious, had some blood tests Hb and heamocrit evaluated had few more sets of bloods test all elevated then referred to haematology, waited 4 weeks for JAK2 result which was positive, had 2 venesections whilst waiting for result, first went well, second not so well ended up feeling rough, blood pressure dropped to 77 over 44 had to have ecg before leaving hospital, worried me when nurse told me she was worried as dropped too low, saw a Dr and the consultant I saw earlier that day came to see me said next time would replace blood with fluids at same time, alot has happened very quickly had the result via email which was my request as waited so long, now next appt is not till August was told to start asprin from diagnosis daily now, would be 2 months before being seen again which worries me as a longer gap before being seen again I do have a blood test booked in couple weeks time but just bloods no heamo appt, I have been told PV is manageable which is good, side affects from drugs worry me, was told would need as age is 60, BMB was mentioned at first appt, does everyone have this or as JAK2 positive it is not needed, looking back over bloods test hb has been elevated since 2017 with hematocrit either elevated or top end of range, my platlets mainly in range, feel likes it's a minefield and not know what I need to know, need to ask, need to do to help condition, sorry for long post any advice welcome please
Newly diagnosed with PV JAK2 positive - MPN Voice
Newly diagnosed with PV JAK2 positive
First item to look at is your hematocrit (HCT) You say it was top or above range. What numbers did you see? We MPNs are advised to keep it below 45 (43 for female in the US) The standard ranges are higher than this, but don't apply to us, we require lower ranges. Your Dr should have provided you this guidance.
In recent years it's becoming more common to proactively treat PV, in particular if you and Dr consider interferon (INF) Pegasys or Besremi. These treatments, if you and your Dr agree, can stabilize or possibly reverse the disease. But it works best when started early rather than waiting for things to progress. It's especially recommended for younger patients, although many of us older guys are on it too.
You should also ask what your Jak2 allele burden (AB%) was. This is how much of your Jak2 is mutated. Knowing this at the start will be useful as you journey through your experience. INF is known to be able to reduce this percent for many patients so if you decide upon this treatment you can know your progress. Some members here are having great progress on this.
I got a BMB. Many do not. If your Dx is clear (unlike mine) and not ambiguous, there is less reason to get one. One reason in favor is as above, as a reference for the future to know if you progress or you improve. INF can also improve your marrow in some cases as it can allele.
Is your Dr monitoring your blood tests carefully? Maybe that's why Dr is ok with the longer appt time. I've had it that way before. But if anything is not right, you should be free to move it up sooner.
Hi thankyou for your reply, my bloods were slightly elevated from 2017 which I only just found out now ,over the couple of years with no blood test they had unbeknowingly climbed, heamatocrit was 58 HB 186 hence the referral to haematology , whilst all recent blood test were being done via GP I could see them on line in my GP records but now the hospital blood test results do not show in my GP medical records so feel now have to ask at appointment so now just asking about Hb and heamatacit last vist was 49.5, I will ask about Jak2 as I did wonder how much was mutated, thankyou again, hooe you are keeping well
Hello and welcome to the forum. Glad you found your way here.
PV is a manageable condition. it is classified as a blood cancer, but do not let that throw you. Think of it as cancer with a little "c" not cancer with a big "C". I was diagnosed with ET about 30 years ago. It progressed to PV about 8 years ago. I have lived a rich life while managing a MPN and at age 66 continue to do so.
The primary goal in managing PV is to control erythrocytosis. The goal for males is HCT<45% and for females HCT<43/42%. This can be done with venesections, medications, or a combination of the two. Cytoreduction with medications is usually recommended starting at age 60, but not all docs follow that protocol.
the JAK2 mutation can cause other issues beyond the overproduction of blood cells. it also causes the overproduction of inflammatory cytokines. This is thought to cause many of the secondary or constitutional symptoms we experience. It sounds like you have experienced one of the more common PV related symptoms, aquagenic pruritis. The good news is that there are treatment interventions that can help with this.
Some of the same medications that are used for cytoreduction also help with symptoms like aquagenic pruritis. Jakavi (ruxolitinib) is particularly helpful for this symptom. There are also the interferons (Besremi, Pegasys) that many of us use to manage PV. The other medication commonly used is hydroxycarbamide. When the time comes to review your medication options, you will need to review the risk/benefit profile of each medication and decide which one suits you best. Note that hydroxy is much cheaper than the other options so healthcare systems may push for that choice. It is a good idea to review each of your choices and make up your own mind about which you prefer.
We are all different in how we respond to each of these treatment options. i am hydroxy-intolerant and it was not effective. I tried venesection-only for a while, but the side effects of the induced iron deficiency were worse than the PV symptoms. I opted to try Pegasys then switched to Besremi when it was approved. These meds have been much more effective and much easier to tolerate than the other choices for me.
The most important thing at this point is to consult with a MPN Specialist. Most hematologists have little experience with MPNs since they are so rare. You need to consult with a MPN-expert to receive optimal MPN care. Here is a list of docs recommended by patients. mpnforum.com/list-hem./
You should have already been started on low-dose aspirin as this is a standard part of PV care. It will reduce the risk of thrombosis and minimize some of the microvascular symptoms we sometimes experience. If your CBC indiates you need another venesection, the plan to replace whole blood with saline is a good one. That should help to reduce the impact of the loss of blood volume.
The waiting game is tough. Suggest you spend the time looking for a MPN Specialist and educating yourself about PV. Suggest not random Googling. look to reliable sources like Voices of MPN for good information. Here are a few links that will help.
All the best and welcome to the club no one wanted to join but all are glad to be part of.
Morning Hunter, thankyou for your reply and the information which I will look at, medication that mentions chemotherapy scares me if I am honest and some side effects are not great although I know not everyone will have the same side effects , at my first appt was told due to age would need medication but would discuss once JAK2 result was back, when I emailed for results and asked about moving my aug appt sooner due to positive result and any treatment plan that may be needed I was told the appt does not need to be sooner and treatment is given when there are risk factors, I dont know if she forget telling me I would need treatment due to my age, so do I need treatment or not ? maybe I am reading too much into it as its all new to me, it seemed everything went so quickly 2 haemo appts, 2 venesection appts all within 3 weeks prior to diagnosis then nothing for 2 months and I have since had positive result in this time, all I can do is wait now and educate myself in that time, thanks Hunter for taking the time to reply and keep well yourself am sure I will be back with more questions
Your reaction is quite normal and we have all been there. It takes some time to wrap your head around. PV is similar to diabetes in that it is a chronic condition that can be managed but not cured (yet). Know that it can be managed.
Of the three drugs mentioned, hydroxycarbamide is the only one that is chemotherapy. It is a drug that is borrowed from treating a CML (leukemia) and Squamous Cell cancer. Since one of its side effects is to suppress blood cell production, it has been used to treat MPNs (off-label) for some time now. Hydroxy is also approved for use in treating sickle cell anemia due to another of its side effects (macrocytosis). It works by inhibiting DNA synthesis. It is an antimetabolite (cytotoxin). Some people tolerate hydroxy OK and benefit. others do not.
Jakavi is not chemotherapy. It is a JAK-inhibitor. It inhibits the JAK-STAT pathway that is upregulated by the JAK2 mutation. Jakavi was developed and is specifically approved for treating PV and MF. It can be very effective at symptom reduction.
Besremi is also not chemotherapy. It is an immunomodulator. Besremi was developed and is approved specifically for PV. It binds with interferon receptors and inhibits blood cell production. For unknown reasons, Besremi appears to more specifically target mutated cells and may reduce the mutant allele burden. Some people achieve Molecular Remission. Pegasys is another type of PEGylated Interferon. It is used to treat hepatitis. It has been used off-label in lower doses to treat PV for quite some time now.
There is no rush to make a decision. In the absence of a prior incident of thrombosis, the risk factor in play is being age = 60. There is no sudden transformation that happens between age 59 and 60. The age 60 protocol is based on large numbers of people and statistical averages. We all age differently. It may or may not apply to you individually. Or as my MPN Specialist said "65 is the new 35." That is not to say to ignore age, just do not feel it requires immediacy in making a decision. You can afford to take the time to process the information so you can make a good decision for yourself.
The best way to make a decision is to first set your treatment goals (what you hope to achieve with treatment). Then define your risk tolerance (what things are you willing to risk or endure to achieve your treatment goals). Then review your treatment options and decide what your preferences are.
If you prefer to rely on aspirin and venesection-only, that is one of your options. Some docs are OK with this for people age>60. Ultimately it is your decision to make. It is your body, your decision about which risks to take and which benefits to seek.
If you prefer to treat with medications you have multiple options. Many healthcare systems prefer to start with hydroxy because it is so much cheaper. If you do decide to opt for cytoreduction you may need to advocate for yourself to access one of the more expensive medications. It is worth the time and effort to advocate for yourself if this is the option you prefer. Most of us age>60 with PV do opt for cytoreduction. As I mentioned previously, the IFNs have been more effective and easier to tolerate than the other options I tried. My primary goal is about quality of life and my QOL is better on Besremi. The fact that it may well extend the length of my life is important too.
ALl the best as you move forward.
Thanks Hunter, it's a lot to digest without it feeling overwhelming with so much information to look into, I really appreciate your time and everyone's responses on here every bit of knowledge is helpful
Welcome, I think your consultant was on the ball giving you a venesection before diagnosis but now hasn’t given you time or the support you need to digest the news.That’s awful. Are you in the UK? You should have a support nurse although I didn’t with my first consultant. When I moved to my second the support was amazing.
If you are UK based contact MPN.org.Uk they can give you a buddy and leaflets. It really is a good organisation.
Chin up with MPN voice and this site you will have lots of support. I have ET so hopefully lots of people regarding PV will give you the answers i you oh need.
Morning Wyebird, thankyou for replying, yes am in UK and yes I did meet a nurse at my first venesection, she gave me her number and email and said could call or email if needed to, I feel the same everything moved quickly 2 haemo appts, 2 venesections appts all before diagnosis and all within few weeks and now 2 month wait for next appt my highest haematocrit was 58 at last appt was 49.5 hence 2nd venesection, my haematocrit fluctuated from 51, 56 to 58 prior venesections, it worries me what the blood can be doing when no one checking it, it's all new maybe I will feel better once I settle in to this condition, only looked further into MPN voice and come across health unlocked through that, the nurse did tell me they would give me details of support etc once diagnosed but appt not till Aug, hooe you are keeping well thankyou for your time to reply
Bother you need support now not next appointment. Anyway you’ve got it on this site. Glad you have a nurse. Send her an email explaining your fears. 2 monthly appointments are fine after the initial few. I was weekly then fortnightly but that was because I went straight onto drugs as I was high risk. Our condition is different too ( I’m ET)I do recommend having a copy of all your blood test results. You can then query numbers and clarification.
I took years coming to terms with my condition eventually realising that you can’t fight it. Neither can you give into it you have to work with it. Good luck
Hi there and welcome to the forum.
I note that you are in the UK. Has your hospital haematology department appointed you a Clinical Nurse Specialist (CNS)? This is usually the case. If you’re not sure ask at your next appointment. On my initial diagnosis I was given a card with the name of my assigned CNS and her contact number. You can discuss any concerns you may have with your CNS between appointments, they are very supportive.
Depending where you live in the UK it might be worth your while consulting with an MPN Specialist. These are rare diseases and their professional input is invaluable, and especially as you have reservations about medication side effects.
Here are two leading MPN Specialists in the UK
Professor Claire Harrison, Guys Hospital, London and Professor Tim Somervaille, The Christie, Manchester.
Check out the link below to MPN Voice (Polycythemia).
mpnvoice.org.uk/about-mpns/...
Hi, yes I was assigned a nurse, the same I was given a card with details maybe I will contact her, she said would give me support information after diagnosis, I am confused when I see this nurse though, she is in the haematology day clinic which is not where I go for my appts I only go to day clinic for venesections, I am under Guys and St and Thomas where Prof Harrison is based but I am not under her I am under someone else maybe I can look into that and find out if a move can be done thank you for your time today and hope you too are keeping well
Hi
I've was diagnosed with PV just over 2 years ago and it can be a challenge to understand the condition better but also not to be too scared. There is lots of reliable information out there including the links Hunter has suggested. I particularly liked the pvreporter website for information on trying to deal with itchy skin (one of the most common side-effects of PV) and a presentation on how certain anti-inflammatory foodstuffs may help.
Definitely look at mpnvoice.org.uk who have information on their buddy scheme where you can have contact with someone further down this road for support and information, if you feel that would help.
I've always been advised that prior to a venesection make sure I've drunk at least as much as they're taking out (500ml) and being well hydrated anyway generally helps matters, especially before a blood test.
I take low dose aspirin and hydroxycarbamide (also called hydrea) which I can tolerate well and only had a minor side effect (nausea) when I first started which went away quite quickly. Other people though can't tolerate it as well but there are other drugs that can be used. I think initially the approach can be a bit of 'let's try this and see what happens' as everyone is different and the reactions can be different so it can take a while to find the appropriate regime, dosage etc. as Hunter has described.
I get the impression that in the UK bone marrow biopsies are not done routinely (my hospital doesn't) especially for PV whereas in the USA this seems to be more routine.
And yes, PV is manageable and as a lady in one of the MPN Voice online patient forums said, "if you're going to get cancer this is one of the better ones"! Previous MPN Voice online forums in the UK are available to watch on Youtube and there are also videos available from MPN Advocacy in the USA which Hunter has given the link to. You might find it useful to have a look at some of these to help you understand PV better. Any videos with either Prof. Claire Harrison of Guys & St. Thomas' or Dr. Ruben Mesa in the US are certainly worth watching as they seem to be the top experts on MPNs.
Finally, the better informed you can be the more you can help the medical team help you and don't be afraid to ask questions. Within your haematology team there may be someone like a clinical nurse specialist who you can have easy contact with and who can be your first point of contact. I have the email address of mine and she is very helpful in either answering questions or checking with the consultants on things.
Good luck
Paul
Hi Paul, thankyou so much for your reply, I looked at Prof Harrison from Hunters reply, it seems she is at Guys and St Thomas which is where I am under but I am not under her, I only looked at this site yesterday and can see there is lots of information which I will look at and watch, definitely interested in the one regarding itching as it drives me mad, I will take your advice and read and learn as much as I can. Your 2 years down the line I hope you are managing to keep well , Thanks again for your time I am sure I will have more questions to ask, have a good weekend
Hi Cityreach,I am 70, female, in the UK and have PV. The others have given you great advice and they understand and explain bloods way better than I can. But I do know about the itch, although not itching at the moment because I am taking Ruxolitnib, I endured it for 6 years and really sympathize with you. Some things that helped me cope were hot shower not tepid as most doctors advise, an oil based moisturizer not water based, an anti histamine taken about 45 minutes before the shower. I found fexofenadine good. And when it will just not stop a brisk walk or jog ( even though I was in tears as I got into the lycra). I also tried and still do to eat a Mediterranean diet.
It took me quite a while to get to grips with it but don't panic there's loads of help. Good luck and best wishes.
Hi, thankyou for your reply, I do take fexofendine daily 180mg have done since April before I knew I had PV as I was scratching so much legs were black and blue, now I tend to use ice pack and not scratch, at the start of taking it the itching went complely for a few weeks it thought it was a miracle drug lol but it returned although some days I dont itch and some days it's a milder itch but some days its with a vengeance, there seems no reasoning as to why days are different, I used to vary when I took it through each day, Then haemo told me take at night so changed to that but that makes no difference, I asked for something stronger GP said no but can take an over the counter anti histamine if need be too occassionally I do that, I will look into oil based moisturiser and what is in what I use now i tend to use aveeno mainly but do swop those around too, I have had itchy skin after showering for couple years now on and off never did I think would be linked to something so serious, will also try a hotter shower and I had seen that somewhere else too but always keep to cooler showers as recommended anything worth a try, hope you are keeping well and thanks for advice
Thanks.
I (and others) think information and knowledge helps empower us in dealing with this. Itchy skin drives me mad and there have been various suggestions as to how to manage this. I find having a cold shower every other day (can't face it daily) combined with taking a turmeric (I'm switching to curcumin soon) supplement and something called N-AC helps stop the general itchy skin attacks I used to have although I still react when in contact with water but that passes after half an hour or so. I do though long for a hot soak but never mind.
If you do think of taking any supplements do please discuss with your haematology team first. Again everyone appears to be affected differently by this and different approaches may work for different people, it's not a one size fits all situation.
Also always read the contributions from Hunter and EPGuy as they seem to be extremely knowledgeable and I wonder sometimes if they know more than the medics.
You are in good hands being under Guys and St. T's and I believe they have patient support groups which should be very helpful for you. Just in my 2 years or so I've seen a number of contributions from staff there in various webinars so I'm jealous!
All the best.
Paul
Thanks Paul for your help and advice its really appreciated ,I have got alot of reading to do to get on track, yes I agree about GSTT hospital as originally GP referred me go Royal London who didnt have no urgency in them said repeat blood test in 6 weeks time then refer again if need be, I was not happy as I had read a bit about PV and I seemed to fit into that, insisted GP go back and tell them I do not want to wait another 6 weeks , so GP done 2nd opinion to Guys with my bloods and they said refer immediately, GP asked if I minded if she replied to royal London with her thoughts that their advice was not the best, RL then come back with a telephone appt for me on 13th July so would still be waiting for that telephone appt now and nothing done, best thing I done was insist more was done and now am already diagnosed had 2 appts at haemo and 2 venesections, agree we need to stand up for ourselves, have a lovely weekend and thanks again
HiThis is a bit of a hurried reply as I m away and surrounded by grandchildren!
I won’t go into all the complicated medical nitty gritty speak as I can see others have done that.
Instead I ll summarise how I have managed PV which I hope may help.
I m now 68 was diagnosed 14 years ago.
I too had a dreadful “itch “ - incidentally known as aquagenic pruritis. Like having thrush under your skin, a blow torch on the surface and a zillion insects bites at the same time. Ghastly
Other symptoms as well.
My haematocrit was 74.
Now this is really really important. YOU MUST FEEL HAPPY WITH YOUR TREATMENT AND YOUR HAEMATOLOGIST. You can CHOOSE which hospital you go to and you need someone who understands and will talk to you.
I decamped from my local hospital in Lancaster and chose to see an Mpn specialist at the CHRISTIE in Manchester who is superb. Really superb. And I m very fussy and forthright!
Find an Mpn specialist, email him if you can, ask your doctor to refer you. Hey presto.
NOONE will look after you like you do.
You must be your own project manager.
Learn all the medical terms connected with PV.
Ask whoever you see what your haematocrit is.
Go onto Mpn voice.org.uk and ask for a buddy. This scheme is worth its weight in gold.
You ll speak to someone who knows exactly how you feel. I ve buddied around 40 newly diagnosed folks some of whom have remained friends!
So - re the itching. Stop showering and bathing. I haven’t had either for 13 years.
I wash my face, I have a bidet ( plastic ones available on Amazon which you can fill with water and pop on the loo) wash my hair over the bath. Ditto feet. Wipe chest bosom and underarms with micellar water on large cotton wool pad.
Try this for a month. I promise you won’t smell.
Drink loads of water - 1.5 litres to 2 litres every 24 hours.
Walk briskly for an hour a day.
Watch your diet - go down the anti inflammatory route ( google anti inflammatory recipes)
Hydroxicarbamide is nothing to be afraid of and suits the majority really well. Ditto venesection if you need them.
You ll be fine I absolutely promise.
Cup three quarters full. PV is a bit like diabetes - treatable but at the moment not curable.
I would be so happy to chat to you.
All will be well.
Love
Louise xx
Thankyou so much Louise your advice has been really appreciated, your haematocrit was really high, highest mine has been was 58 that I know , it was 49.5 last hospital visit, this is information I could never find prior to this forum I used to Google find bits of info but was all a bit random, from the replies I have had on here are really helpful, I got a lot to look into and read up on and am sure will have more questions along the way, thankyou for your time to reply and have a good weekend with your grandchild I know how wonderful grandchildren are and cherish the time with my own, hope you dont mind if I come back to you at some stage, thanks Jill xx
Hiyouve had some good replies already , I thought I might add a few points.
Its normal to feel overwhelmed initially but that will settle. You are wise to read everything on the MPN voice webiste and watch the videos, a similar site is wwwmpninfo.org which is based in US but international, they have similar info sheets and good vids, they also have a forum. Self education is key, it will take time but worth it.
Waiting to August to see the consultant maybe feels too long for you but unless you are having other probs then its okay as long as you keep your Hct below 45 if male and ideally under 43 if female, this is essential as thrombotic risks rises exponentially if above the 45 for males, keep taking the aspirin and keep mobile and hydrated.
Re the dreaded itch, I have PV and had itch few years before diagnosis , you have my sympathy , I was an olympian itcher at diagnosis. Some of the supplements and techniques mentioned on her work for some but not for me. The main things for serious itch that worked for me are UVB phototherapy, Ruxolitinib and aerobic type exercise exercise before shower. I had UVB trial with dermatology at Spire and it worked and then I bought the machine and used it low dose daily for 7 years and it was a life saver, prob reduced the itch by about 90%. Ruxolitinib tends to stop in 100% for most but you might have difficulty getting it as its expensive. If you want to go that route Clair Harrison maybe the best person to help you get it.
Re the other dugs mentioned here ie HU or Peg. HU in a few cases can stop itch but unusual, if Peg agrees with you it can reduce or stop itch but for some can make it dramatically worse (me). I am on Rux now. Combining HU and UVB may not be wise as HU can cause skin cancers. I did UVB and venisections for 7 years and my skin is perfect, I did UVB and Rux for 4 years and skin still perfect. My mother had serious skin cancer so I am careful and get it checked every 9 months. For a subset Peg can have other longer term benefits such as possibly reducing progression etc but it is a subset and it can have more side effects.
Re the venisections and getting Saline at same time due to low BP. You can also get smaller venisections which may cause less of drop. I sued to get 125ml monthly (Clair Harrison wrote my local haem to get this after my local haem said it was not clinically practical!). I also had saline AFTER each venisection as I found it hard to tolerate venisections, one thing to think about is that really the saline should go in immediately AFTER the venisection otherwise you are venisecting diluted blood is blood and saline, I know a lot of nurses like to do that and they will even want to put the saline in one arm and venisect in the other arm at same time or even worse saline first but the bottom line is your then partially venisecting saline. The saline should go in after, smart haems understand this. Similarly blood tests should be done with a separate needle before the venisection and not from the blood being venisected. I get my bloods done at the GP and get a copy of results which I keep on a excel spreadsheet, all the veterans do this.
Quite a lot to take in initially but feel free to ask any questions
I hope that helps 
Hi, thankyou so much for the advise and tips, I will question the saline at next venesection , why I am worried about the 2 month gap for next consultation is because at my last appt I was still 49.5 for hematocrit , I have had a venesection since then which would have or could have lowered it, my concern is they don't know as blood test was done prior to venesection, I kept all my GP blood test results on a spreadsheet and thought I was going bit overboard but I like to see where each results were but now I know I was not going overboard, my issue is prior to heamotolgy referral I could see all my bloods result via nhs app, now am under heamotolgy in a different nhs trust the results I cannot see on my medical records on line well that's what my GP told me, what do people do ask for copy of blood results at haemo appt are they happy to print out for you, thankyou for your time to reply and I will have a good read on everything, have a good weekend
If you had Hct 49.5 before venisect and the venisect was typical 450ml ? then from my experience Hct may probably not be under 45. What you could do perhaps is to get another blood test from your GP asap , the results are normally back in 2 days and get a printout of the labs, if its over 45 contact your Haem or Haem nurse or worst GP and ask for another venisection.As a separate note if you have a venisection it can usually take a week to 10 days for the blood levels to settle so best wait that time before retesting. I hope that helps
Hi, my GP is a nightmare takes 2 weeks for blood test appt, I do have a blood test on 13th at Guys, I think I will email the nurse I have been allocated explain all to her see if I can see her on 13th and wait for blood test results and see if venesection can be done if needed whilst I am there I do feel I have just been left now with no support since given positive result in an email, I am not complaining about an email as that was my choice, I think will try GP too thinking about it if it's still about 45 will also speak to nurse, last venesection took under 450 as I felt bad and blood pressure dropped really low, thanks for advice will contact both it's been more than 10 days since last venesection thankyou so much
Hi Cityreach and welcome to the forum. I also had intermittent blood tests between appointments when first diagnosed. They should look at them and contact you if there is a problem. It’s their way of keeping an eye on you before your next appointment. I never took any medication before I was diagnosed and hated even going on daily aspirin which strangely made me feel better so I decided I liked aspirin. Then the thought of pegysus with the long list of possible side effects scared the life out of me but happily it works well for me and I haven’t looked back. Whatever treatment you decide upon remember there is a choice so if one doesn’t suit you, you can try another. It’s all a bit daunting at first but it should all fall in place after a while and not be a worry. Never had a bmb but was offered one as a marker mid diagnosis but said I would rather not and haemo was ok with that. Good luck and let us know how you get on
hello Cityreach and welcome to our forum, if you would like to learn more about having a buddy for support and help, then please email me at buddies@mpnvoice.org.uk
It might also help you to have a look at some of the videos of our patients' forums, you can find them on our YouTube channel youtube.com/channel/UC-S_Ic...
We are holding a virtual forum next Mon, with the focus on symptom management and fatigue, full details and how to register to attend are here: mpnvoice.org.uk/news/mpn-vo...
with best wishes, Maz
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