Log in
MPN Voice
3,483 members5,191 posts

New PV diagnosis Dec 17

Hi all, I've just been diagnosed with primary PV with confirmed JAK2 mutation aged 41. Always had red cheeks but think my diagnosis was hidden for a while as historically very active and sporty but arthritic hip stopped me in my tracks 18 months ago. Had some routine bloods done recently for fatigue symptoms and Hb came back at 199 with HCT of 0.6 and moderate splenomegaly which I had mildly 2yrs ago.

I work as a GP and a hospice dr so kind of understand the medical stuff but just wondering and hoping that you can reassure me that the headaches/dizziness/sob/nausea and brain fog improve once levels stable. Obviously work quite stressful so have taken the last few days off as not on top form and now undergoing weekly venesection. I was due to have a hip replacement in the spring but feel this will need to be delayed until my count is sorted.

Anyway I'd be grateful for any replies particularly on the feeling spaced out front improving.

many thanks

50 Replies
oldestnewest

Hi Heidi, Welcome. You have been diagnosed at the right time. So much incredible research going on. No one can tell you how your body will react to a lower HCT. I felt better with my first 2 venesections. As my iron reserves dwindled I struggled with fatigue. I’m now doing well on Peg-interferon.

Eleanor

1 like
Reply

Thanks Eleanor. That's really good to hear and this site is fab. Thank you

1 like
Reply

Hi Heidi, welcome to this forum. You will get help and support here and on the MPN Voice website, both of which are monitored.

My fog, or “porridge brain,” as I like to describe it, is definitely worse when I need blood taken off and it does improve after venesection. I found it took about 8 months for my counts to settle and venesections to slow down but everyone is different. However I would like to reassure you it does get better and many people on this forum have had PV for years and are still here.

Drink plenty of water, eat as healthy as possible but definitely treat yourself too. Above all, remember you are not alone, people on this forum know exactly how you are feeling and how anxious you may be at the beginning.

PV is a journey with some ups and downs but knowledge allows us to feel we have more control over our disease and not vice versa.

Keep in touch, kindest regards Aime xx😺😺

1 like
Reply

Heidi apologies I meant to offer sympathy with your hip as I had a new knee last year and have an appointment before Christmas to see how far the osteoarthritis has progressed in my hip. Aime xx😺😺

1 like
Reply

Oh good look with the hip. Its just difficult not being able to take any painkillers whilst brain fog on. Fingers crossed your OA is stable. xx

Reply

Hi Heidi, I only take strong painkillers at night otherwise I wouldn’t get a sleep and even if I’m in brain fog, I seem to be able to tolerate them. My PV is more stable than my OA which is unfortunately having a rampage through my hips, feet and hands but at least it’s not life threatening.

Kind regards Aime xx😺😺

1 like
Reply

Thanks Aime- yes I was tempted to take my co-codamol last night as this snowy weather ain't great for the old OA!. Sorry to hear your OA is misbehaving.

Best wishes

Heidi xx

Reply

Hi there, I was diagnosed back in the spring with PV at a similar age as I’m 39. My symptoms that led to my diagnosis were light headedness & dizziness.. thankfully after repeated regular venesections at the beginning to bring all my levels to within normal ranges I have felt much better however I’m also a terrible sleeper so I find that plays a huge part in how my head is! Of course we are all so different in our make ups but I’m sure your symptoms will improve over time with treatment. It must be tough though with all the brain power you must need to do your job.. best of luck with it all & it’s so worth keeping up with all the posts on this forum as it is so reassuring hearing from others who understand exactly what you are going through. X

1 like
Reply

Thank you so much. Yes it is really reassuring reading all your lovely replies and posts to know that it can affect any age as in GP land most tend to think it is more something for the over 65s. Glad to hear you are feeling much better too and thank for your lovely comments. I'm feeling more positive already although slight apprehensive re time lines to get feeling better but at least I'm on my way with treatment. Thank you x

1 like
Reply

Oh bless you, you are so welcome.. So glad to hear you are feeling more positive too. It took me quite a while to come to terms with it all at the beginning. We are definitely rather unique being young & female for this it seems! I have found everyone on here to be so helpful & I have gained a lot of extra information that I wouldn’t know otherwise. As it’s so rare it’s great to be in touch with others who know how it feels I’ve found. Wishing you all the best & merry Christmas! X

1 like
Reply

Thanks so much and yes hope you have a lovely Christmas too x

1 like
Reply

Hello Heidi,

I was diagnosed with ET a year ago at age of 60. My platelets were around 1000. I was put on Hydroxy and aspirin. Like yourself, I did not have any symptoms, I stopped taking the Hydroxy in September because I decided to take a different approach. I recently paid good money to have a blood and hair analysis test done privately, by the Morley Robbins group. The results needed to be interpreted to me because they were amazingly complicated. For example Ca/Mg ratio and Cu/Fe ratio are very significant and if these among many other ratios are out of balance, this could have been the cause of high platelets. I am now on a regime which does not involve taking expensive vitamin pills recommended by some expert usually from America, just supplements you can get on Amazon or Ebay quite cheaply, like Bee pollen, Stabilised Rice Bran, Diatomaceous Earth, getting nourishment from food. As a GP you would understand about blood test results. The entire Human Race is on a quest to find answers and I am not saying this protocol will work but at least I am trying. I may have to go on Hydroxycarbamide but only after nothing else has worked.

xx Searcher56

1 like
Reply

Hi there. Thanks for your reply. Looking back I did have all the classic symptoms with fatigue/brain fog/dizzyness etc but was putting most of it down to workload and possible side effects from painkillers for my hip arthritis. Once my bloods came back I learnt about the aquagenic pruritis which I wasn't aware of prior so I'm informing all my GP colleagues so they may get better at looking out for MPNs in the future.

Really hope your current protocol works and you counts improve soon.

Thank you x

1 like
Reply

Hello Heidi,

I had a sore right hip for years but that has almost got better now and I put it down to eating a healthier diet. I was 16st and now I am under 13st because I discovered that the reason people cannot lose weight is because they do not know what they should not eat. I was put on a simple diet by a herbalist - no tea, coffee, dairy, gluten and sugar for 30 days. I lost weight even without trying and since then I have been on a quest to discover more about the human body, nutrition and health care and within a year I have learnt so much and changed my mind many times about everything. That's why I do not recommend anything to anybody because I know this time next year my thinking would have changed yet again. Your sore hip could be caused by something that you least suspect, could even be the vitamin pills you take in the belief that they are doing you good.

1 like
Reply

Congratulations on that weight loss-people do find it so difficult to do and definitely reduced load on your joints is always a great help. The human body is truly fascinating as you say and keeping open minded re all the new research out there definitely sensible. Glad your hip has improved. Alas mine is bone on bone OA and worn out probably from too much hockey over the years. Luckily I'm under the Wrightington specialist orthopaedic team where hip replacements first began and although I'm biased working for the NHS we are so lucky to have it.

Hope you keep enjoying and benefitting from your new discoveries about health and nutrition.

Best wishes.

Heidi

Reply

Dear Heidi,

Welcome to the MPN community even though I am sure you would prefer not to be on this path. It was a great shock to me when my red cheeks and itchy reaction to water were identified with PV. Then the many venesections over about 3 months reduced the red cells to acceptable levels but left me anemic with the symptoms that go with that. It was a trying time.

I did a lot of research. This site is very helpful and searching the archives with key words gives the personal information that fills in some of the jigsaw. This site wasn't in existence 12 years ago when I began my PV experience so I found the US equivalent which I have posted details of below. This is a more technical site.

But for now once you are stablized with HCT around 13/14 and HGB around .44 you can work out what medications will keep the counts stable. Best of luck. Mairead

To post to the list, address your email to mpn-net@listserv.acor.org

-To reach a list owner, write to mpn-net-request@listserv.acor.org

-To unsubscribe or change subscription or search the archives:

listserv.acor.org/archives/...

-Frequently asked questions (FAQ) about PV, ET, MF, CML:

mpdinfo.org

-General Rules for the ACOR Lists at acor.org/faqs/lists/listrul...

1 like
Reply

Hi Mairead

I did try to reply the other day but ?didn't send. Thanks so much for your response and all the helpful links too-its so reassuring to hear everyone's experiences etc. Thank you.

Heidi x

Reply

Hi Heidi

I have MF rather than PV and was disgnosed a year ago. However, , your symptoms sound very like the ones I had. And still have, on and off. I was relieved to find that there was a physical reason for them. I found that I feel much better, and more my old self, when my blood oxygen levels get up to 97 98%. Instead of bumping along at 95 and under. When I first had a blood transfusion the brain fog lifted almost immediately , and came back slowly as the effects of the transfusion wore off. So its reversible. The fatigue gets better too, but stress make it worse. For me, feeling anxious also comes and goes with the brain fog

Don’t know of any published research relating o2 sats to symptoms. It would make sense, tho . And might tie in with exercise helping with symptoms.

Ruxolitinib is used to treat PV in the USA: I find the American info on MPNs is worth tapping into.

Happy to share experiences along the way.

Rachel

1 like
Reply

Thanks so much Rachel. Really interesting re the O2 sats stuff. Obviously one perk of my job is I do have a sats monitor so will keep an eye on that. Glad you've had times when the brain fog has cleared as that is obviously my biggest concern re work etc at the mo. Interesting re the ruxolitinib in the USA. I live in the north west and the Patterson Institute at the Christie Manchester which suffered severe fire earlier in the year is moving very near to us at the old Astra Zeneca site in Alderley Edge so I'll be well up for volunteering if they start doing trials of the ruxolitinib in future there.

Re the stress although I'm a fairly laid back person this diagnosis alongside my arthritis means I'm going to really have to take stock and focus bit more on myself and keeping well for my near 7 year old daughter who is currently building a snowman as its winter wonderland up here at the mo! I really love my job and feel guilty for being off at the mo as we are so short staffed which isn't helping re stress. I am hoping to come up with a plan to keep going but with altered hours and some reduction in the workload. At my practice we do a system where patients speak to drs on the phone and then we bring people down if needing seeing on the day. Sometimes it can be 50-60 phone calls in a day +all the other stuff so I don't think that is feasable for me now.

Anyway sorry I've wittered on but thank you for your reply and I'll def be keeping an eye on the forum. Hope your treatment goes well .

Heidi x

1 like
Reply

Dear Heidi. You apologised for wittering, but I find it really helps to just say whatever is n your mond. Its not wittering at all : its basic self help

As for work the Disability Duscrimination Act ( now renacted as something else along with the other duscrimination legislation. Brain fog strikes again as I can’t recalll the title) means that yr employers have to make reasonable adjustments to yr work to deal with the disability. And that includes changes in work load and so on Its a lot wider than kust ramps for wheelchairs

If you message me happy to talk you through how it works. I used to do stuff on employment tribunals.

Keep o wittering whenever you need to This is a safe space full of friendly people.

Lots of love

Rachel

1 like
Reply

Thanks Rachel. Really good to know that I can contact you if work not being amenable. The only good thing at the moment is the practice are really struggling to recruit salaried Drs like me therefore I'm hoping they will be keen to try and retain me even in a reduced capacity. I do feel slightly bad though that I'll need a good 2 months off soon for when I have my hip done too -they must rue the day they offered me the job 4yrs ago!

Thanks again re allowing the wittering !

Best wishes

Heidi

Reply

Its not just that your employers may choose to "be amenable". Once you have a disability they HAVE to make the reasonable adjustments. I'm not up to date on the details of the law any more, but it might be worth a quick chat with an employment lawyer locally to see just what their obligations are. Its often perfectly possible to keep earnings fully intact.

Happy Christmas

Rachel

1 like
Reply

Thanks Rachel that's really helpful. Once things calm down a bit I'll get in touch with the BMA as I'm member and they are meant to advise on contract type issues etc.

Thanks again and have a lovely Christmas

Heidi x

Reply

Hi Heidi, I was diagnosed with PV with high platelets 3 years ago at 50. After 2 years on Pegasys my blood counts normalised and most symptoms have gone. Fatigue is much reduced. Still have some brain fog though which is a pain as I am an academic but it is manageable. All the best to you, Susana x

1 like
Reply

Thanks Susana- nice to hear your story and sorry you still have the fog at times. Re the fatigue at least now I might finally have an excuse to get a cleaner to help as I'm sure mother in law thinks I'm just lazy (she is OCD re cleaning and has no family paraphernalia in her house to limit dusting needs, whereas we have elderly black lab who loves to leave fur everywhere)!

Thanks for your good wishes and hope the pegasys continues to work well for you.

Heidi x

1 like
Reply

Hi! For me the brain fog has never improved. I’m a teacher in a damanding school district, and my teenaged students think I’m a ditz sometimes. I’ve learned that I can’t get rid of fatigue or brain fog, so I make lists and use my phone to write things down for everything. I also take a picture of where I park in a garage. I’ve lost my car three times now! Lol

The toughest thing is getting others to realize that you aren’t the same as you used to be. People don’t know what PV is, and since it’s an invisible illness, there’s not much understanding. Try to let people know and open up about it.

I’m only 39. I see you are young, too. How are you emotionally handling that? If you need to chat, let me know. That part was tough for me. I have two kids, and this was tough for me to accept.

Best wishes!

Tiffany

1 like
Reply

HI Tiffany

Thanks for your response and the tips to help not lose your car etc! It is difficult isn't it with our nice rosy cheeks and everyone thinks you look well. Glad you are still managing to work despite the grief from your teenage students.

Due to my hip problems I was already feeling past it for my age and wanted to get that sorted so I could be active again with my 7year old daughter. The double whammy now with the PV isn't great. We had hoped to extend the family but now I'm going to focus on trying to get as well as I can for my daughter and make sure we live life to the full if possible. We have an elderly black labrador who trots along at a perfect pace for me so may extend the family that way by taking on other elderly woofs as don't think I could keep up with younger springer spaniel types etc at the mo! I was already resigned to us not having more kids really, but my husband still keen so that been difficult- even fit 41yr olds find motherhood tiring without our bonus problems!

Anyway hope your 2 are well and hope you have a fab christmas and thanks again.

Heidi

Reply

HI Heidi, I was diagnosed at 38 with PV Jak+ for exactly the reasons you describe. Dizziness, Fatigue and painful fingers and toes. Im only on Aspirin and Venesections and my platelet count is always around 1450 and my HB level drifts over .45 I have a venestection every 4 weeks or so and take aspirin and most of my symptoms have completely cleared up. My bad back even feels better. I still get the odd dizzy moment when I am due a draining but its nothing like the vertigo I experienced before diagnosis. It will be interesting to see if you are recommended just aspirin and venesections as i think they prefer to keep younger people off other medication as long as they can. But then again everyone is different. I work full time in a job that involves long days and lots of travel and have no problems keeping up at the moment so don't worry about it changing your life. Hopefully you will not really know its there apart from the odd visit to the hospital and drinking loads of water all day.

Hope you stay well.

Joe

1 like
Reply

Hi Joe

Thanks for your reply and yes I've never drunk so much water in my life! Upsettingly for this festive season I have no interest whatsoever in the festive cheer I usually enjoy so at least I can be taxi driver for everyone else.

Yes at the mo the plan is aspirin and venesection - having my blood done next wk to see how the weekly venesection is going and fingers crossed we can continue just on that but its been great to hear the success stories for others on here with the additional treatments.

Great to hear you are managing your busy work ok and still living a full life-very encouraging.

Hope you keep well and thanks again.

Heidi

Reply

Hello Heidi

Welcome to the PV 40’s club! I also have PV and i’m 46. I was diagnosed in May. It is rather a shock at first but I have now come to terms with the condition. It is a funny one as often by blood counts are normal but I still have the symptoms that you are also experiencing. As I understand it this is to be expected as part of the condition. I have been having venesection to bring my HCT levels down and I have now been on Interferon since early September.

The great thing about this forum is we can all share our experiences which I have found very interesting and helpful.

I hope you are ok and let me know if you would like to discuss anything as we would appear to be in a very similar situation.

All the best Disney

1 like
Reply

Thanks Disney. Yes its been really reassuring to have such lovely responses from you all and to hear your stories. I hope you are doing well on the interferon treatment. Its not what I'd hoped for in my 40s but with my work I see a lot more unfortunate people than me so I will keep counting my blessings and try and live life to the full with a definite shift in work/life balance.

Hope your treatment goes well and thank you.

Heidi

Reply

Heidi,

Welcome to the JAK2+ Club, sorry to learn of your diagnosis. I was diagnosed right after my 57 birthday. My platelets are high but not out of sight and I have good control with a venesection once every four weeks, the blood center checks it at 3 weeks and we go from there. I am also on 500 mg of Hydroxy urea. My symptoms mirror yours; but, seem to come and go. I do seem to tire quickly and have other joint pain that I didn't have previously.

I am also diabetic, non-insulin dependent. My ferritin is at 8 so am very anemic and my vitamin D level is at an 18, still way below the expected range. I have just added in B-12 and gone to 5,000 units of Vitamin D, plus 2,000 of Vitamin C. The Doc recommended the VItamin D; and after reading up on it, this could be part of the culprit in some of my symptoms as well. You might check your blood work as well???

No good way to increase the ferritin level without raising the Hgb as well. My goal is to stay below 15 as there is a graph that shows heart attack risk goes up over 15.

1 like
Reply

HI thanks for your reply. Glad things are fairly stable for you at the moment. Yes the vitamin D is an interesting one. In GP land we've only really been checking it on patients the last 4-5years for patients with fatigue type symptoms and its amazing how many times it does come up low. I will def ask them to check my vit d next time. Definitely trying to keep a tight control on your diabetes alongside your MPN will help reduce your cardiovascular risk- good luck!

Thanks again

Heidi

1 like
Reply

Sorry you had to join us here but welcome. We are a friendly bunch and between us very experienced and supportive. I echo all the suggestions that you seek out a specialist in dealing with MPNs.

You will soon adjust to your diagnosis if you read the right things. MPN Voice is an excellent site that offers correct information. Maybe a good idea to avoid relevant Facebook pages as these can be complicated by misinformation at times.

Very best wishes, Jan

1 like
Reply

Thanks Jan yes thats very good advice. I'm trying to send all my relatives/friends etc to MPV voice to help them understand thing. My mother is already offering my a bone marrow transplant from her but I've reassured her we aren't at that stage yet bless her!

Have a great Christmas

Heidi

1 like
Reply

Welcome to the forum. I can't offer advice about your symptoms as I am in the fortunate position of not having any, but your hip is interesting. I was told about 3 months before my PV diagnosis that I would shortly need a hip replacement -I started pilates in earnest and then with the PV I started on hydroxy. With one or other or both of these my hips are now brilliant. My understanding is that since PV is an inflammatory disease, the hydroxy could be having beneficial effects on the hip issue.

There is research starting at Sheffield to see if a osteoarthritis drug could be used for PV.

I do hope your dizzyness resolves.

1 like
Reply

Thanks so much. That's really interesting re your hip and the good response to the hydroxurea. I had mine injected and manipulated earlier in the year to try and delay need for replacement. After your note I might get in touch with my hip specialist re this - thank you.

Hope you are keeping well and the pilates etc continues to be beneficial

Best wishes and thanks again

Heidi

Reply

Hello Heidi

welcome to our forum, as you can see it is a very helpful and supportive forum. I won't add anything other than to say don't forget to have a look at all the information on our website mpnvoice.org.uk. If you would like any of our information booklets for you and your partners in your practice let me know and I can send some to you. Best wishes, Maz

1 like
Reply

Thanks Maz. Yes I've been quite overwhelmed by the friendly and positive responses so far. If I could take you up on the information booklets for work that would be great and also my non computer literate relatives. Thank you very much.

Best wishes

Heidi

Reply

Hi Heidi

Welcome to the forum. I haven't been on in ages but it is a great place for info and support. I'm sorry to hear that you need to be here but I'm glad you found this haven so quickly!

I am a 39 year old female with a 4 year old child and have been diagnosed with PV for almost a year. I'm getting bloods checked every 4 months with no treatment so far. I go through phases of being up and down about it all but it's very important for me to stay as healthy as possible for my son so I understand where you are coming from in relation to your daughter.

Getting fit and healthy is definitely a goal for me (although I am very overweight) alongside keeping well hydrated. I think the more we can do for ourselves, like eating well and exercising regularly, the more positive we can feel about our conditions which can only be a good thing. Feel free to message me in your personal messages section if you ever fancy a chat with a similarly placed person. I don't have much experience of PV yet but I do know it's good to talk!

Take care of yourself :-)

P.S As an example of brain fog I just posted this on a totally different thread and had to delete it and post it where it belonged!

1 like
Reply

Thank you so much. Yes being diagnosed young is bit of a shock. Glad you are coping ok at the mo. Its just frustrating when you want to be active with your children and are limited with the fatigue/dizzyness/breathlessness etc, although my dodgy hip had already limited me this last year. Obviously the big thing is to try and keep well for the children. My other struggle is I've always been very sporty and used that as a wind down after busy stressful job so coming to terms with that is taking time. At the mo I'm on weekly venesection as my counts were very high but hoping they will start working and fingers crossed the spleen will reduce as the nausea/quesiness is rubbish this time of year. I've pulled out of all xmas do's as no interest in booze or rich foods at the mo so the only positive is that I've possibly lost a bit of weight! Looking forward I'm hoping to try and find some alternate hobbies and someone mentioned one of those electric powered bikes to help get up the hills!

Anyway I hope you have a lovely Christmas with your son- 4 is a fun age. Thanks again

Heidi

Reply

hi Heidi I’ve got polycythanemia Vera primary I’m new on here I need a hip replacement just wondering if u had ur hip done if everything was ok

Reply

Hi there

Yes I just had my hip replaced 13 weeks ago aged 41. Op went fine they just delayed me having it until I'd recovered from my 6 venesections at the turn of the year. Anaethetist seemed happy as long as your platelets are under 1000. I went on the hydroxycarbamide to get the bloods as good as possible for the op. My aspirin was switched to apixaban post operatively for 5weeks then I just reverted back to the aspirin. I wore my TED stockings for 8 weeks rather than 6 weeks for extra precaution. Mainly after the op its just getting walking on it. Pain much improved and just tends to be stiff in the mornings or after sitting. I did struggle with the heat and spent lots of time reading whilst lying down as is more comfy than sitting for long periods. My recovery energy wise has been slower than people without PV but I'm getting there. The orthopaedic team weren't overly excited by the PV but its the anaethetist who will decided if you are fit enough.

My wound seemed to heal well and leg wasn't very swollen. Back of thigh still bit numb but tolerable. Its good to be back driving.

As long as you keep walking and drinking plenty things should go ok.

Have you been referred yet ?? Hope it goes well for you.

Best wishes

Heidi

1 like
Reply

Yes been to hospital this morning doctor never heard of polycythaemia said he would need to write to hem after he told me all the risks he said there was nothing in the medical ligature on how to performed a hip replacement on someone with polycythanemia said he would research it said I would need a high dependcy unit for 24 hours cause I’ve got some other medical problems as well said once he got reply from hem I would be looking at about 6 weeks or two months wait for surgery it is all a worry but look at u I think u have done brilliant with ur recovery and things can hopefully only get better for u thank u for getting back to me u really did help to put my mind at ease

2 likes
Reply

Glad it helped. Main issue with us is the increased clotting risk but they will treat you for that. I was on the normal ward after and taking few steps later that day so fingers crossed the HDU issue only comes into play due to your other problems. Good luck

1 like
Reply

thank u

Reply

hi Heidi just an update on hip replacyment been really ill given the allclear having surgery on 6november is it safe to fly for 3 hours outward and 3 back 10days before surgery holidays booked

Reply

Hi there

Sorry to hear you've been ill but glad you've got a date for your op. It's definitely not ideal to be flying so near to surgery as potential to increase your risk of blood clots. I'd ring your pre-op nurse assessment team as they will have guidelines. They state long haul is 4 hours or more and with having PV it does increase the risk and they may advise not to fly 2-4 weeks before surgery. I'd definitely get in touch with the pre-op team asap to get more solid answers. Good luck

Reply

thank u Heidi will do tomorrow

Reply

hi Heidi having hip replacyment on 6 nov have u any advice for after surgery still very frighented of having it done I really am having second thoughts about it

Reply

You may also like...