I’m a bit in a pickle and not quite sure what to do. Ever since I was diagnosed with PV, I’ve been having regular sickness leave from work. My symptoms have got better over time but I’m still struggling. There’s a certain level of symptoms I can deal with and continue working but when my fatigue and joint/bone pain get too bad, I just can’t cope and have to call in sick. An episode can take from 1 day to a week. I do have worries my employer will not be able to accept this any longer, however so far, work is understanding and supportive. I’m just not sure how long I can keep up with these ups and downs. It’s draining and my mental health also suffers.
How do any of you deal with similar struggles?
Thanks in advance.
Nadine
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Nay123
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Hi, I’m ET rather than PV but really sympathise with your situation. Strangely enough I have taken the decision to quit work very recently and am now wind img down my business. The reason that I eventually decided to do this was because the workload was very intense (morning through to evening pretty much every day). I’m sure others who are/have been self employed can relate to this. What I’m trying to get at is my job was fine prior to ET but for the last 2 or so years since diagnosis I found it really difficult. I eventually realised that if I continued At the same work rate I would also continue to NOT give myself time to focus on living with the illness to the best of my ability. I will still need to work in future but will spend the coming months (with more time on my hands) focussing on my general health & well being and then get a more suitable job with less hours/stress etc.
Sometimes we all need to take a step back with certain things to then take a more positive step forward.
I don’t know your full work situation but certainly have much sympathy and sincerely wish you well x
Thank you so much for your response. It must have been a big decision to stop working for some time but you’re completely right in saying that one must sometimes step back and look after oneself. Glad you made that decision. Ideally, I’d like to do exactly the same until more stable but I haven’t quite figured out yet how to finance it. I had a few weeks off over Christmas and for the first time since my diagnosis in May last year, I felt more or less normal, even forgot about my condition sometimes. That was a special experience but now I’m craving this all the time and get even more frustrated when I feel unwell again.
Thank you for your sympathy and well wishes. I wish you all the best, too
I was diagnosed with ET about 30 years ago. It progressed to PV about 7 years ago. I was able to keep working through it all, but there have been challenges. Particularly in the last several years. Thankfully I only work part-time now.
Depending on where you live, you should have protection regarding your employment. Here in the USA it is housed on law in the ADA. I believe there is something similar in the UK. It is good news that your employer has been accommodating thus far. The best thing to do is to be sure you understand employment disability law/regulations where you live. You actually will protect both yourself and your employer by staying within the bounds of law. It will also go a long way to work with your employer (assuming a cooperative attitude) to ensure you maximize your ability to work and minimize disruptions the health issues are causing. When both parties work in good faith, a lot can be worked out.
I hope you will also be able to work with a MPN Specialist to modify your treatment plan to deal better with the symptoms you are facing. Things can get better with effective treatment.
Thanks for the reply. Good advice. I live in the UK and did get some advice in regards to sickness absence due to a disability. As a result of that, I asked my employer to put a policy in place that covers exactly that. This is in progress. I’m also still planning to phone up the union to get some advice. I’m also referred to Occupational Health by my employer and awaiting an appointment, so that’s positive. I believe that my employer is willing to discuss adaptations but at the moment I’m not quite sure what could help me. as you said, to maximise my ability to work. It is still fairly new to me after all.
Talking to my Haematologist about the symptoms is a whole other story. He has been a bit dismissive about my symptoms which made me feel a bit insecure in regards approaching him again. So until my next appointment in March, I’ll try and prepare as good as I can and then have that conversation again.
I am glad that you are working things out with your employer. When you work together in good faith, these issue can often be worked out equitably. It does sound like your employer is trying to work with you, which is really great.
Saw your note about being on Hydrea and only being age 42. These days Hydrea (aka hydroxyurea - HU) is typically not initiated in patients under the age of 60. Hopefully the doc reviewed with you the other options which may have a better risk/benefit profile for you. Do be aware that asthenia (fatigue) is on of the common side effects of HU. Here are a few links to info on HU just in case you have not seen them.
It is very important to be clear and assertive with your hematologist about what you are experiencing. It is NOT acceptable for the doc to be dismissive of your concerns. If that pattern of behavior continues, I would dismiss the doctor from your case and find another provider. If you have not already done so, it is very important to involve a MPN Specialist in your case. Most hematologists do not have the KSAs to provide optimal treatment for MPNs. Here is a list of docs with MPN expertise. mpnforum.com/list-hem./ ..
Thanks for the links. The more I read about Hydroxycarbamite, the more I‘d like to change to another medication. I was diagnosed last May and as just venesections did not work, I was grateful to get Hydrea as it did help to get the levels down. Initially, my haematologist only wanted to give it to me short term but it’s been months now. If I have to stay on medication long term, I’d rather be on different ones. I also wonder if I’ll be able to stay off drugs altogether at some point? Not sure if that’s possible?
As for the list of recommended Haematologists, mine is actually on there. It might be a matter of knowing how to talk to him and be informed, assertive and challenge him. Hence I’m really preparing well for my next appointment 😁 A second opinion is planned if I don’t get anywhere after that.
Sorry to hear the venesections did not work for you. I am currently managing with just venesections, but that has side effects too. I am looking at other PV tx options myself. I am considering Besremi and PTG-300.
Definitely go for a second opinion with another MPN Specialist. You may also find a doc who is more compatible and easier for you to work with.
Hello Nadine, I completely understand how you are feeling, I used to get really bad episodes like yours and had to stay off work, and like you it could be for 1 day or a week, and of course it is worrying you, having to cope with these symptoms is bad enough, but worrying about your work and what your boss and colleagues are all thinking makes it worse. (I've got ET)
It is good that your employer is being understanding and supportive, they at least understand that you can't work when you are feeling so unwell. As they are so understanding maybe you could have a discussion with them about the situation, and explain how concerned you are about having to take time off, and what their position is going forward and your job security with them, and then discuss ways to help you when you are feeling unwell, perhaps making changes to your workload and times that you work to help you on days when you don't feel too well.
Have you discussed the symptoms with your haematologist or nurse specialist, they may be able to help you. You can ask for advice for pain relief for the bone pain, and also ways to help with the fatigue, we have a some information on our website about fighting fatigue, including a link to download our leaflet 'your guide to fighting fatigue' with some useful hints and tips on how to cope.
On a personal note, as I said above, I used to suffer very badly with these symptoms and had to take time off work, I do still get days when I get the fatigue and bone pain, but not as often and not as severe, and what helped me was taking Hydroxycarbamide, my consultant said that they would help with these symptoms and they did, they made such a difference, but as I said, I do still get bouts of fatigue, bone pain, dizziness, but am more able to cope.
Hi Maz,Thanks also for your response. It’s so good to hear experiences from others. It’s one of the things that help me understanding that I’m not alone with this weird condition I don’t even fully understand.
I think it is a very good idea to discuss with my employer the concerns I have re job security due to my sickness record. I will be able to approach my employer with that. As I said in my response to hunter5582, I’m referred to Occupational Healthy and hopefully with their help I’ll figure out what adaptations could help me.
Thanks also for the links to fighting fatigue and legal rights. I might not be very active on here but I do read a lot and the information I got so far from this page, as well as other sources, are just so helpful. Unfortunately, I have not yet found the right way to fight my fatigue. Once it kicks in, it just knocks me out. Can’t even make myself a cuppa without huge effort.
I am also on Hydrea and my levels are more or less fine and altogether, but the bad episodes still appear regularly. I went 2 weeks feeling mainly fine just to go off sick again for a whole week last week. I’m back in work this week and managing but struggling.
Trying to stay positive that all my experimenting with different ways of making myself feel better will eventual be successful 😁
May I ask you how often you still experience symptoms in a way that you have to stop what you’re doing and rest?
Hi Nadine, I am glad that you are finding the posts on here are helping you, I hope you get your work situation resolved.
With regards to my symptoms, I don't get them very often now fortunately, but on the odd days here and there that I feel fatigued it can also vary in severity, some bouts I am able to carry on and do things, but not everything, and slower, I find that having a few more breaks during the day helps, just to sit with a cup of tea and listen to the radio or sit in the garden when the weather is nice does help and also going out for walks, I walk my dog 3 times a day and it does help to get moving and be out in the fresh air, and I set myself limits, so I will say to myself and Bart that we will walk to the first field and then see if I can go on or turn round, then if I can go further I will and set the next stop and so on, and more often than not I find I do the whole walk and feel much better. But then there are some days, not too often, maybe about 3 or 4 times during the year that I am completely exhausted and just don't do much of anything, I do go out for my walks but don't go too far and then rest.
It is all about pacing yourself and doing what you feel you are able to.
Thanks for sharing your experiences with symptoms. I really hope that at some point the frequency of my symptoms will be less as well.
I definately feel much better when I don’t have to work as I can just look after myself and take things slowly. My job is very stressful, I work for a domestic abuse support service and the workload has increased during the pandemic. I often have to work overtime. I have zero energy left for anything else after work which is not a big issue during a lockdown, but once things go back to „normal“, I fear to continue being quite isolated as not having the energy to get out. Before my illness, I’ve been a very active person, out and about all the time. As I was diagnosed during the pandemic, I really don’t know yet how it’s gonna be once it’s all over.
Luckily, I also have a dog who demands 3 walks a day which is good. She keeps me going 😁
My husband has post PV MF he was like this on hydroxy so exhausted struggled to do day to day job .Since changing to ruxolitanib it's been a game changer he's got no exhaustion now and works full time x
Interesting. I did tell my Haematologist already that I might want to change meds at some point, just because what I read about Hydrea, I don’t feel I wanna take it long term. I’m only 42 after all 😋 It’s good to hear that a change in meds could also potentially make a difference to symptoms
I had really low iron levels but my haematologist allows me to take low dose iron and after months now it’s gone up to a healthy level without having an impact on my red blood cell count.
We asked about taking iron , but we're told that being iron difficient is ok for PV sufferers .There's no way my husband could function the way his bloods were.
Ruxolitanib really has made a massive difference to his life now x
Hi Nay123, I'm low level Ferritin too, (18) curious how much was yours ? I'm taking iron supplement been couple of months, but not sure what kind of impact that will have on my blood counts. I have little elevated RBC and platelets
Hi Prince, I had a ferretin level of 9. I’m now on 44. With the medication I take, it currently does not have a negative impact on my RBC. It took me since last summer to get up to the current level. My haematologist is still happy to continue with low iron supplements, but then I have to go for blood tests every 4-6 weeks, so he can keep an eye on my RBC. Hope yours will be sorted, too.
I’m not quite sure if this post will be noticed in this older chat but I’ll give it a go.
This was my chat from 5 months ago and lots of things happened/changed since then, except me suffering from fatigue. It’s driving me crazy.
I’ve changed my treatment from Hydrea to Interferon and for the first time since diagnosed in 2020, I started feeling “normal” again. Combined with a phased return to work and reduced hours for some time, I managed not having to take sick leave for 3 months.
3 weeks ago, I was then back on working full-time and what can I say, I was off sick all last week due to fatigue, pain, breathlessness, tinnitus, pins and needles. All the symptoms I did not miss the last 3 months.
Now I’m getting the idea that full-time working is not something I can deal with at present and the question is whether I need to consider reducing my hours or whether a change in treatment is needed again to ensure I can function.
Do I have to accept that life post-diagnosis might not be the same as it was before or will I be able to get back to normal?
I’m not coping very well with this uncertainty and starting to feel like losing control again. It’s such a set back.
I just needed to share this with the community and grateful about any advice, information/experience sharing or encouraging words of wisdom 😊
Hi Nadine,I just spotted your post this evening. This is such an unpredictable disease , I hope you are feeling a bit better this week. I was diagnosed just before covid in Feb 2020 and have many symtoms similar to yours. I was finding work very difficult to manage pre diagnosis . On diagnosis I requested a change of role to help me manage the symtoms of MPN at work.
However, as of April this year I am now officially retired. I found it impossible to commit to regular work due to my ongoing symtoms, including the dreaded fatigue. It was a difficult decision and one which I had not planned or envisaged for myself for another 10 years . However, in my case it was absolutely necessary. My application for an invalidity pension was fully supported by my very understanding GP.
Since ceasing work my symtoms have not gone away but I am able to deal with them much better these days and simply take one day at a time. I do my garden , walks and daily yoga and am meeting up with my wonderfully supportive friends again for walks and coffee now that I am fully vaccinated 🙂.
I take daily aspirin. This along with drinking 3 litres of water a day has helped ease the severity of burning footpains and pins and needles in my hands I experienced pre diagnosis.
Sadly, I have lost confidence in my current haemotologist and his team and therefore like you, I am also trying to get a second opinion. My current haemotologist most perturbingly refused my initial request per phone a few months ago and on my first face to face appointment face to face since my diagnosis just last month and my second request for referral for a second opinion was also refused.
In the meantime, I was admitted a few weeks ago to a separate hospital due to severe breathing problems and chest pain . After carrying out numerous tests and procedures their cardiologist referred me to an MPN specialist as he stated my problem is one of chest inflamation and not connected to any problem he could identify in my heart or lungs .I am hoping i will get an appointment at some stage , either publicly or private with this MPN specialist.
My diagnosis is ET triple negative and I want to have a discussion about my treatment plan, symtom management and any further tests which may be required with a haemotologist who actually understands MPN symtoms, the impact of these on quality of life and my concerns of progression given my diagnosis.
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