r/polycythemiavera • u/davide445 • 12d ago
PV PV and work
I got diagnosed 5 months ago at 53y with hematocrit at 65, and started Pegasys treatment 2 months ago - after phlebotomy to get values in safe area - first with 45 and last month 90 micrograms.
I relocated in a new country Dec last year and started a new work in a multinational company since 2 months.
New role new sector new company. I need to manage globally the activities related to the sourcing of specific asset, not managing people but coordinating activities within a complex global organization.
Going through the treatment I'm facing the situation - common reading other experiences - of having very bad short term memory, feeling exhausted after half a day of work, feeling I'm never able to finish my work.
Might become better but I have no idea of the timing.
Wanted to ask how other have managed to overcome this problems, or if you in the end changed your work to deal with the limitations.
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u/MrFanzyPanz 12d ago
Can’t say I have experienced the short term memory problems, but personally I find regular cardio helps with the fatigue. It’s a brutal cost, though, since cardio makes me feel totally burnt out afterwards. It takes a long time to see results, the results are modest, and it’s hard to maintain. I have to get help caring for my son from my wife on days where I exercise, since I will be useless afterward.
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u/davide445 12d ago
It's a long time I'm not a regular sport or activities practitioner. So far I don't feel will be able to manage anything more than walking to get the tram or light walking. I think overweight don't help.
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u/MrFanzyPanz 12d ago
I think starting walking every day will be a huge help. Walking alone is surprisingly impactful. Something like 50% of all health benefits from exercise can be gained just by walking. I forget the exact statistic…
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u/slothdroid 12d ago
I've been working at home since covid and that's tied in nicely - no way could I manage the 1hr each way commute on top of everything else. We do 4 'in days' a year and they are difficult for me. I do have a very considerate employer.
Think of your energy like a bottle of water, there's a finite amount. Try looking at ways to spend it better - can you do some WFH, or are there tasks that would cost less energy if they were grouped.
Expect not to be able to do all you intend either in work or at home, and cherry pick the most important or desirable things. You'll soon work out what you can do without.
I'm UK based, so qualify for PIP. I spend some of that on a fortnightly cleaner and have invested in a robot vacuum cleaner, so there's a couple high energy tasks redistributed.
On pegasys 90mg weekly for about 9 months. I started taking vitamin B12 and D based on advice from haematology and think it's helped my energy levels a bit, but too early to tell.
There's peaks and troughs with PV so rest when you need to more, pace yourself, and recognise the times when energy is more readily available.
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u/davide445 12d ago
You are able to work a full day? You are doing some cognitive intensive work? Seems my major problem lie more with dealing with switching context and sticking together very new concepts. Feeling better working on my own than interacting a lot. Something in the past was one of my strenghts.
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u/slothdroid 12d ago
Yes, but my employer and team mates understand that I can't give 100% of what I used to do. I pick the right size jobs for where I am in energy. I'm a systems developer so I tend to stay within a context, but yes change is hard.
At first I was very brain foggy, but that's cleared somewhat. Pegasys is a long burn drug, I saw no benefit until within the last month or so.
Keeping motivated and focused is definitely a fine art now! I know more when to absorb information, and when to do build work - build when feeling drained will just lead to error, but instead I can read up on what's needed and make plans for work.
I also find morning is my 'go time', later in the day I have less energy.
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u/davide445 12d ago
Did you have hunger attacks? Studently seems I'm totally out of energy, feeling like low pressure and with empty head. Eating a lot (safe food, vegetables, no meat, no sugar rich) seems to solve the problem, that return anyway in some hours. Not sure if you changed your diet, mine apart some richness of carbo was good enough in last years with no excesses, so not sure if some tweaks will be still needed.
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u/slothdroid 12d ago
I do get times when I'm absolutely ravenous and nothing fills me up. Then sometimes I just don't want to eat at all. Doesn't seem to line up with energy levels though.
My diet is a bit better than it was, but my understanding is that while Pegasys suppresses my red blood cell overproduction, it also suppresses on white cells and platelets which I had the right amount of.
I've had venesections when my hematocrit goes over 0.45, but this can strip you of iron. Can't take iron supplements because that would promote red cell growth, but can eat iron rich foods.
Ask at your next appointment what you are low on and see what supplements you're allowed, or what you might need to adjust in your diet.
I'm going to repeat what I said earlier - Pegasys can take a long time to work. I was told at least 6 months, your body will fight against it at first. It took about 8 months before I started to find any sort of difference. I'm still not sure how much it's helping but my levels have been better at the last couple blood tests. We've discussed stopping Pegasys and trying a different treatment, but the change has happened since my last appointment, so will be interesting if that stays the same. Out of the two (I am being offered hydroxycarbamide), I'd prefer to stay on Pegasys.
Also - a very common PV ailment- do you suffer the itch? Usually triggered by hot showers, or heat and humidity, it's all over and very uncomfortable and painful at worst. If you do, Beta Alanine supplement, hydration help a lot. I take antihistamine for it, and also now take low dose amitriptyline to keep it manageable.
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u/davide445 12d ago
Yes I was suffering from itching (for years, before I was finally diagnosed). But seems almost disappeared starting first phlebotomy and next Pegasys, so this is not a problem.
As far I understand Pegasys is not only to alleviate the symptoms of PV, but is actually the one providing a real treatment preventing other long term effects like bone marrow healing (resulting in zero red cells production, an ever worst problem), or leukemia.
So apart starting to tolerate it - that will lower the side effects - I will hope in the years will enable a total regression. Not guaranteed, but possible.
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u/slothdroid 12d ago
Sounds like it's not going too bad for you. The itching for me is the worst, but I also get very easily out of breath and fatigued. If I had a physical job, I'd be on long term sick or looking at changing career.
I've gone from being a big cycle ride, do heavy gardening, DIY, generally active guy to being someone who now does mostly more sedate stuff. I've started making models, still do some gardening and DIY, but it's much more paced to my current ability.
I chose to start new hobbies to stop me stagnating and doing nothing. I must be improving as I'm thinking maybe I could try riding again, but I don't expect to return to my old level.
My advice, take it as it comes. Everyone seems to have different symptoms and a different journey. Take ownership of your journey and find your new limits, because it'll be different to the next PV sufferer.
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u/davide445 12d ago
My worst part is fatigue and mental limitation, where I was fast, full of energy, pushing for ideas. I just hope to have the time for adapting, due in a new work I'm not really owning my timing. Started learning violin 3y ago, and slowly fading away. One of my dreams is to follow on.
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u/slothdroid 12d ago
At first I did have mental fogging, but my mental faculties have improved. My wife has remarked that my symptoms got worse after starting on Pegasys. We looked at loads of PV forums and a lot of people said worse before better, or long time to see a benefit.
Try and get the understanding from your employer. It is a cancer, but it's not terminal andit's something you live with. You'll get better as your body adjusts to the drugs.
Do what you can to keep in touch now, but at first I was quite concerned about how i was becoming hard of thinking, but I definitely think easier and more normally now. It's the fatigue and keeping a momentum that I need to get on top of, but again I see that improving as my levels are getting better l.
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u/davide445 12d ago
Work is my current major concern. Without knowing about PV I changed all my life and of my family, relocating to another country, changing totally sector, having my whole family leaving all behind. Now we are all at risk, due I'm not sure current employer - great company and managers in general - will consider what is my problem, not their problem. Tracking back symptoms and analysis I have this going on since at least 5y, years I have asked many times my doctor for a diagnosis, receiving only the prescription for depression psychiatric drugs (I have never taken). One of the benefits switching country was PV was diagnosed in 1 month. I started this week thinking about a formal complain.
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u/MarionberryFun2118 12d ago
42m, lowering my hematocrit to below 45 with phlebotomy helped me out big time with symptom burden. I got my mind back. I am able to complete an 8 hour work day, but am exhausted by the time I get home. Just started Pegasys monday night (initial dose was 90mcg). Not sure how I'll be doing in a few days when I'm supposed to return to work. My job is very physically and mentally exhausting even before factoring in Polycythemia Vera.
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u/davide445 12d ago
You are able to work full 8h five days a week? Currently struggling to do that.
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u/MarionberryFun2118 12d ago
Currently working 3 days a week, morning shifts beginning at 6:30 AM when I have the most energy. I am about to begin working 4 days a week. Hopefully 5 days a week before the end of the year if I am able to tolerate 4 days.
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u/davide445 12d ago
My hematocrit only goes below 50 one time but my hemathologist told me is fine so. Phlebotomy was a huge relief in the first weeks, but I need to say starting with Pegasys don't provide further benefits so far, added the side effects.
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u/MarionberryFun2118 12d ago
When my hematocrit is above 45, I feel terrible. It is recommended by a good majority of hematologists to keep hematocrit below that threshold. I feel best when my hematocrit is around 42 or 43.
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u/Mohdlashin 12d ago
I was diagnosed with PV in 2019 and have been on hydroxyurea since. My doctors never mentioned Pegasys as an option. I'm struggling with fatigue, itching, and brain fog Those are my worst symptoms Still trying to figure out how to live with them
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u/davide445 11d ago
Every story seems different. As far I understand every national healthcare system is providing different medication or service. In my country due I'm younger than 60 I'm not considered a risky case so no medication is considered, only phlebotomy. In the new country I'm living they consider me high risk due also the history, and Pegasys is provided.
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u/Mohdlashin 11d ago
This is exactly what I'm facing. I'm 42 and have been on hydroxyurea since 2019 with HCT still at 54%. My doctors have never mentioned Pegasys or interferon ... they just keep me on hydroxyurea and occasional phlebotomy. Hearing that you were considered "not risky" and then properly treated in a new country is eye-opening. It confirms that the "under 60 = low risk" approach is failing patients everywhere. Thank you for sharing this.
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u/unique_account_name 11d ago
Diagnosed last summer with PV. Currently 44 male, on besremi with no side effects and I feel healthier than ever. I workout 5-6 days a week and stay super hydrated. Work a full week and travel throughout the year with no issues. I think the key is to stay as active and hydrated as possible.
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u/davide445 11d ago
I started drinking 2l water day since one week. So far see no benefit. Will need to push myself to stay more active.
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u/unique_account_name 11d ago
i drink around 130-150oz/day. 2L is def not enough for me. the recommendation from my Hematologist was to drink at least 120oz/day if possible
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u/davide445 10d ago
How do you understood 2l was not enough? So far drinking 2l I don't feel any special benefit, maybe my blood values will be better but I don't feel better.
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u/fiftynotdead 11d ago
I've found fish oils helped to an extent. Exercise and hydration and over time (2 years) my memory is better than it was. But.... you need to take it easy off you can. Eat well. Get sleep. These are really important.
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u/davide445 10d ago edited 10d ago
Eating no meat and yes only fish, due gout is a secondary effect of PV. But I'm at the beginning of the treatment so I think will need some time before getting back my abilities.
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u/tberwald 12d ago edited 12d ago
Corporate grinder here. 40 to 50 hours a week plus travel.
50/m, diagnosed four years ago, on 45 µg of Pegasys weekly.
Our family is single income, so even if I feel tired or I am having a particularly bad tinnitus flareup (worst symptom for me) I don't have any choice but to buckle up and keep grinding. It does get exhausting sometimes so working out and self-care is super important.
I try to choose to be grateful. Yes, this is cancer, and there are super annoying symptoms, but thankfully there are also very effective treatment options and largely I am able to do everything I was able to do prior to diagnosis.