Hi sorry in advance for this post being a bit long winded!
I’m a 48 year old newly married, mother of 4 working as an HLTA in a primary school.
I have been reading all your posts for the last month while waiting for final test results/diagnosis/treatment and I have to say they have helped me immensely knowing I’m not alone and these symptoms I have are shared by others.
Yesterday I seen my haematologist and he confirmed I have Polycythemia Vera and my jak2 test was positive. I am on hydroxycarbamide, allopurinol and blood thinners and I am getting venesections weekly (4th one on Thursday 🤞🏾I don’t pass out like last week!)
I have had virtually every symptom connected with PV for the last 3 months - horrendous fatigue, breathlessness, headaches, dizziness, blurred vision/halos around eyes, enlarged painful spleen, abdominal discomfort, aching bones/joints and slight itching after a shower.
The venesections have started to ease the symptoms and I’m having more good days now, thank goodness!
Lots of my questions have been answered by this fantastic forum and I realise that some questions can’t be answered as we are all unique - but I’ll ask them anyway!!
Will the fatigue etc only get better not worse now I’m starting on hydroxy and venesection?
I’ve been off work for a month now and keen to get back to normality but scared I go back and get fatigued or working sets me back.
Will my spleen intermittently go up and down?
It was extremely painful at the beginning then eased off a few weeks ago but now I’m becoming increasingly aware of it again. Will meds help it?
Is it ok to drink alcohol?
I’ve had a very small amount alcohol on a couple of occasions and it affected me totally differently to how it used to. Feeling of fullness, discomfort and then hungover in morning after 2 little glasses of rose wine!! I’ve always had a great social life - usually involving alcohol- and it really upsets me to think I can never have that again.
Will the meds etc help this?
Still trying to get my head around the fact I’ve got this forever. I’ve always been a positive, happy person but this is such a strange feeling to come to terms with and also playing it down for my family’s sake - I’m like an emotional roller coaster!!
Apologies again for the lengthy post but thanks for sticking with me and reading it to the end!!
All help appreciated!
Louise xx
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Louise2870
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Hi, Louise, sorry to hear you’re feeling so poorly. I was diagnosed with ET Jak2 positive at age 52, 11 years ago. About 3 years ago, I transformed into Polycythemia Vera so I know exactly what you are going through. The medications definitely help although sometimes the side effects can make you feel worse. I’ve had to adjust my medications many times over the years. I know it’s hard to accept your new normal but listen to your body, go about your life, and rest when you can.
It’s a little confusing because sometimes I’m not sure if it’s the illness or the medications. I’ve been on hydrea and baby aspirin for the last 11 years but I’ve had to adjust the dosage a number of times because I felt it was causing even more fatigue and headaches. Now I’m on jakafi as well and my headaches have gone away and I seem to have more energy.
I think that’s always going to be the case - is it the illness or the meds! Every ache or twinge I get I blame the illness but I’m not getting any younger so perhaps it’s my age!
Sorry you seem to be going through all this.....what a bummer eh!!! :-))
Not sure I can answer your questions, but nice to find someone else that has this Polycythemia jak2 possitive, I was diagnosed two years ago, from a routine blood test at the Drs ( I am 69) it was a check up on my blood pressure pills.
But now looking back 30 years or more, I now understand the symptoms I was experiencing back then, I.e. itching after baths and swimming pools....I thought it was normal and we all had it.
And about 3 years ago I came over very dizzy and felt I was going to pass out so sat on the floor, luckily this was in a hotel not in the street. I realise now that was part of the condition, it happened about 6 months before that too in a Xmas market.
I am on hydroxycarbomide, and aspirin, and my bloods are under control....I do get mildly lethargic, a bit breathless when I try to walk a bit faster ( I am trying to lose a stone in weight)
Am I rambling a bit here 😳
I am hoping someone can help with mouth ulcers I am getting, side effect to the pills....
I wish you luck with your symptoms, I am sure you will get some more advice.
Hi, about 2 years.....no only started them about a year ago, and only had them very occasionally, but this last 4 months getting them either every week or every month, they usually just lasted a couple of days, but this one I have now have had for a week. I am waiting to hear from the oncology dr to see what to do.
Hi Louise, welcome to our forum, pleased to know that the posts have been helping you. It will take you a while to understand it all, and I know that you will get a lot of replies to your questions, so I will leave it to the lovely people on this forum to reply. I will just say that with regards to work, you don't have an easy restful job so the best thing to do is speak to the headteacher and explain how your PV is affecting you, how fatigued you get, and stress that it isn't just being tired from lack of sleep, it's a totally different feeling, and that when you are hit with the fatigue or dizziness, which is horrible, would you be able to go and rest for a while in a quiet room, or even go home. Find out what the school can do to help you get back to work. Best wishes, Maz
Thanks maz it’s all a tad overwhelming! My head and all the staff have been very supportive and told me to stay off for as long as I need to. It’s my own impatience to get back to normal! However I know I’m not strong enough yet - not on my bad days anyway! I’ll give it a bit more time thanks Louise x
Hi Louise 2870. I have had p v for five years now . Started with v sections like you . Hated needles! Got used to it . It is now a way of life . I started on peg interferon in November 2018 - excellent results . My levels have come down, itching is minor now and I feel great! I work in a school and get tired but I have naps when I get home if I need it and the staff are very supportive. It’s about self care and making adjustments . You will get there. I hate taking medication and will avoid if poss . Only had v sections occasionally and daily aspirin for 4 years then on to. peg interferon .All good . Feeling well.Hope this gives you some reassurance. Take care🙂
I too am jak2+ PV, 39 years old, hydroxy , allopurinol and aspirin with the odd venesection thrown in for good measure. So pretty much spot on your meds and situation.
In my experience I have found the symptoms have lessened over time. The original symptoms I had before diagnosis (all you describe) all mostly went away with aspirin. I was on just that for 6 months or so before they tried Pegasys for 6 months ,that was unsuccessful so now it’s hydroxy. I’ve been on that for 8 or so months now and it’s working on my platelets.
I found the fatigue gets better. I took no real time off work when diagnosed as I was starting a new job at the time and didn’t want to start and go straight off. I am tired sometimes but I Udy sally can work through it till end of the day and fall asleep on the sofa. Definitely seem lucky I don’t suffer as much as others on here.
In regards to alcohol I have not changed my approach. If I am out socialising and drinking I drink as I did before, I have not really noticed any difference in the morning feeling. Only time it affected me was my Harmotologist commenting I must have had a drink at the weekend as my blood test showed it.
Again we are call different but I have found after the initial shock and awe of having something for life and going through the “it’s cancer” talk at the hospital my life has carried on as normal. I travel, work, and socialise as before and just have to drop into hospital every 4 weeks or so to be drained or tested.
I have the attitude of trying to live as I did and if things don’t work I’ll adjust then. Try not to worry in advance that you can’t do things as it will only get you down. I completely agree I’ve played the whole thing down to family and it will always be in the back of your mind but you hopefully can live a pretty normal life. Work can adjust if you need it too but you may find you get through the day ok. Socialising and alchohol I would just try and again adjust as needed but you may just be good to go.
This is all opinion not fact so please take what you need.
Ah that’s great to hear! I know we’re all different but it’s comforting to think that I might be able to get back to the life I had before this hit me!
Trying not to worry in advance is good advice and I need to practice that because I know it’s pointless but sometimes can’t help myself!
Thanks for taking the time to write, it’s much appreciated Louise x
I’ll be 47 in May so feel very close to your situation. I have been on hydroxy for 2 years and I lead a completely normal life. I was lucky not to have any symptoms to start off but as soon as I finished the anti-gout and did not have venesection too often, I started to realise how tired I had been before and how much better I was. Venesections make me very tired but I am now down to one every 3 months which is manageable, my platelets are under control and my very red cheeks are now a much calmer shade of pink. I always carry sun protection as I really feel the sun on my skin a lot more but nothing else really. I drink very little but I can still enjoy one or 2 glasses without issues. Hope it all settles soon for you and wish you all the best.
Hi there! Welcome here, and yes... You certainly are not alone in this, this community is amazing!
I am 37 in June and got diagnosed at 34. For me I also had most of the symptoms at first with PV but the hydrea took most away. The bone ache only got better with exercise for me, stronger muscles I guess removed unneeded strain on the bones. The headaches, and fatigue got worse, and nausea was introduced while the hydroxy. I once got ulcers but I managed to sort it out by stopping medication for a while.
To be honest, hydroxy made me feel terrible after 2 and half years and the chonic bad feeling made me very depressed. I've been taken off of the chemo for a month now (and feel amazing) , and yesterday I heard that my Heam finally found Peg Interferon!!! I am so glad to start using this soon rather than Hydroxy.
I can't comment on the spleen, mine never really gave issues, at least the medication should stop it from getting bigger as it will controll the amount of cells it needs to deal with.
Alcohol in moderation is ok, I found that I did get tipsy a bit faster while taking the drugs than normal, and hungerover more from drinking less.
Best of luck with everything, and always stay positive... I know it can be overwhelming and hard at times!
I thought I’d say hello because I’m in a similar position to you. I was diagnosed with calr+ ET June 2018 aged 40 and I teach Y6 at Primary School. Initially I was told to take baby aspirin, which took away the silent migraines and dizziness , but had no effect on my platelets or fatigue.
I’ve worked through it all, until this last week when I had a million hospital appointment and the fatigue got too much. My count has continued to sky rocket (Up to 1700) so I was started on Pegasys Interferon and Allopurinol which on balance has worked out for me. Day 2,3 and 4 where painful, my bones and joints all ached and all I did was sleep, but day 6&7 and I feel amazing, lots of energy. I’ve not felt like that in months, possibly years.
The next weeks cycle starts today and I hope over time I get less achy day and more energy days and that those pesky platelets counts go down.
Good Luck on your journey. It is an emotional rollercoaster, the fatigue makes everything seem worse than it is. Hopefully you’ll find the right meds that work for you. I’d love to hear how you get on balancing your MPN, busy family life and crazy Primary School job!
Hi Charlie pleased you’re feeling better - the energetic days are a gift - love them, but they’re few and far between at the moment!
High five to you for managing to work through it as school is so fast paced!
I’m staying off until after Easter when hopefully my meds would’ve settled down and I’ll feel well enough to go back. My school has been so supportive sending me flowers and pamper hampers! I’m so lucky to have them and I know they’ll look after me when I go back.
Hi, I’m off now until after our Spring Break which starts next week. The rest is doing me the world of good a lot of my negative thinking has gone away now I feel like I’ve got space to think. The fast pace of school I was making me even more fatigued.
Although this round of treatment hasn’t come at a good time school wise with Y6 SATS coming up, the head has been very supportive. I’ve not told many of my colleagues because I didn’t want to worry them with a sort of cancer. It’s a grey area I didn’t feel confident explaining with out falling apart. Especially when my treatment was only aspirin. I’ve explained it to a few more people after this period of sickness and the change in medication.
Now my mood has lifted and I’m feeling more energetic, I’m looking forward to the Summer Term.
School life is so tiring when you’re in good health - at this moment can’t imagine doing it with these symptoms on board! When I do go back it will be a phased return to break me in gently!
I asked my head to tell the rest of the staff so I didn’t have to explain my absence - I was inundated with messages of love and support. People are so lovely 😊
I always say a problem shared is a problem halved!
Sorry to hear you are having such a rough go of it. Sounds like the splenomegaly is quite troublesome. My understanding is that there are meds (e.g. Jakafi) that provide better relief for this symptom. The authorization for the more expensive meds often requires that a cheaper med fail first - which is sad as the outcomes are often predictable. All of these meds come with side effects, so I is hard to determine sometimes what is the PV and what is the med. I just came off the HU as I became intolerant of it. Actually glad to be off it as my new hematologist feels risks not worth the benefits (especially the mutagenic-carcinogenic risks) . Hope you find an approach that works for you. FYI - the venesections made a HUGE difference for me.
It’s a bit worrying to think that they use the cheaper meds first when they know others are more effective. Do we have the power to ask for other meds?
The venesections were making me feel better but this last week my symptoms seem to be getting worse again. Just started meds on Monday so not sure if they would have any affect yet.
I think the answer depends on which insurance system you are in. Here in the States it all depends on your policy. I have heard in the UK, it can depend on you local system, but I know little about it. I know that in any system you will only have as much power to improve your care as you are willing to seek. It feels a bit like tipping windmills at times, but you only get what you need if you are willing to advocate for yourself and don't take no for an answer. All the best.
Hi Louise I was eventually diagnosed with pv jak 2 positive like yourself 2 years ago aged 50. I have to admit that since venesection and commencing hydroxy things have improved and the itching is now tolerable. I have a busy job working with children as well and was finding this hard due to the fatigue(often feel like having an afternoon nap with the little ones Myself!) by chance I read on the forum that if you have critical illness cover you can claim. This has been Godsend so please check your insurance policies. It has enabled me to reduce my hours at work and allows me to enjoy the time I'm there instead of feeling exhausted. I think as far as long term I tend to have ups and downs, this seems to be dictated by my bloods, I am aware when my Hb is up as I get intolerant to both the heat and alcohol which also makes me flush and raises your body temperature. However despite the hydroxy making your skin more sensitive to the sun I always feel better after a warm holiday but ensure I use suncream. Hope this helps. Good luck.
Hi thanks for responding! We do sound similar! Unfortunately I haven’t got critical illness cover so reducing hours isn’t an option. I’m cursing myself for not getting it now, but hindsight is a wonderful thing!
Hopefully I’ll be able to tolerate alcohol better when they get my blood level - just had my 4th venesection today but count is still too high.
Pleased you’re in control and enjoying life 😊 Louise x
Sorry to hear your recent diagnosis and you joining the PV club but hopefully you've found solace in some of the replies already. I was very similar to you symptom-wise when I was diagnosed 18months ago aged 41. Had 6 venesections at start and now just on aspirin and the hydroxycarbamide.
Re the fatigue definitely give your self time to recover and highly recommend phased return. I ended up being off for quite a few months as was having a hip replacement too. The fatigue potentially does improve but doesn't really go away so its a matter of pacing yourself and trying to save the energy for the most important things.
Re work being iron deficient doesn't help alongside the brain fog. There's no way I could do my previous long 12 hour days now and its still a struggle to be part time so do be kind to yourself. Sounds like you are part of a lovely team -would recommend an occy health review as they can advise/recommend phased return etc.
Re the booze I also used to enjoy it especially as I work for the lovely NHS but my taste for it has totally gone and when I have had more than 2 glasses of something I've felt quite poorly for a couple of days after so I've almost turned tee total apart from the odd cheeky baileys which seems to sit ok. Luckily my friends haven't disowned me but I do miss joining in with them.
RE the spleen mine is moderate to severely enlarged- I had hoped the hydroxycarbamide would shrink it but no joy so far. JAkafi potentially can shrink it but isn't offered 1st line on the NHS for PV as at £20K/yr compared to a few hundred pounds for hydroxycarbamide which has been around for donkeys years sadly they have to go with the tried and tested cheaper options.. If you are intolerant of the hydroxy then it is a option but you'd probably need your haematologist linking in with a MPN specialist for approval.
Ah bless you for taking time to answer all my questions! I appreciate it!
My spleen is giving me lots of jip at the moment. Has your pain always been constant? Mine seemed to disappear after the first 2 venesections but came back last week with a vengeance! Couldn’t cope with this pain constantly 😢
I’m the same with alcohol - don’t have the taste for it like I did and when I do I can only have a couple and pay for it the next day!
The life style change is going to take some getting used to.
Yes its very upsetting re the alcohol! Re the spleen pain mine is more of an ache. It tends to affect sleep and I have to have a teddy/pillow to support it if I lie on my right side.. Bit like being pregnant again! If you are getting alot of pain with the spleen then hopefully they'll order an ultrasound on it- your GP can arrange fairly quickly if you are not due back with haematology for a bit. Good luck
Hi Louise, hang in there it does take a while for both your body and mind to get come to terms with this diagnosis. I was 49 when I was given the results of jak2+ and Pv. When I was first diagnosed I was off work with ‘the itch’ and fatigue for 3 months. Once I was medicated my fatigue lifted and I was back to work full time. That was 2016. This winter has been a bit horrendous for my fatigue, I think due to my 3rd round of shingles.
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