Ive recently be diagnosed with Essential thrombocythemia (ET), Polycythaemia vera (PV) and MF at the age of 35.
After having a blood clot in my arm after going to the gym one day, then a few weeks later i had a clot in my lung.
Currently on apixaban, and peginterferon.
A few months ago my hematologist put me on 90mg of peginterferon which didnt agree with me and made me ill so has now been put back down to 45.
But im experiencing alot of bone ache which is painfull at times especially in my legs and hips.
Has anyone got any good tips to help with this?
As paracetamol doesnt really work, and im not allowed to take ibuprofen.
I do take magnesium supplements which seems to help the pain when im a sleep, but i work nightshifts fulltime and the pain is excruciating while im at work for 10 hours a night.
Dear @luke01
Thank you for posting, I am sorry to read of your triple diagnosis, that must be a lot to get your head round, please know we are hear if you want to talk, our number is 0808 2080 888.
I am sorry you are having some struggles with pain, I have no doubt you will get some great advise here but I wanted to check, have you spoken to your medical team, they would be best to offer advise on this? They would potentially be able to prescribe something for this and will be able to help you manage things. Hospitals do also have specialist pain teams which they could possibly refer you to.
Hello again @luke01, welcome back to the forum with what sounds like most of the Myeloproliferative neoplasms (MPN) at once. Wow I’m so sorry that you had another clotting event after the one that got you diagnosed with Polycythaemia vera (PV) initially. I don’t imagine this year has been much fun, and perhaps filled with appointment after appointment…
Not much I can add to all those great tips that were suggested last year. How has your exercise been, are you still getting to the gym? Maybe you took up yoga or another slower form of exercise? Any movement at all gets the blood pumping, as you know, so hopefully you’ve felt up for a bit of that this year.
Although I’m not a doctor, and certainly no expert of living with symptoms of Polycythaemia vera (PV), Essential thrombocythemia (ET) and MF all at once like you, I was under the impression that if one of the usual cytoreductive medicines we’re prescribed doesn’t work too well then we can switch to another. Some people don’t get on well with hydroxyurea, for example, and move over to peginterferon, or in other cases ruxolitinib. Might be worth pointing out to your haematologist that you’re experiencing a lot of bone pain and to ask if there’s another medicine you can try?
Have a look around the forum as I know there are other Myeloproliferative neoplasms (MPN) survivors who swapped from one medicine to another due to tricky side effects. A new forum member recently joined with a double Myeloproliferative neoplasms (MPN) diagnosis and they might have some tips too, have a look via the search bar at the top.
Sorry not to to offer anything more useful. How’s your sleep routine during the day? I used to work overnight and although I’d occasionally stay awake during the day after work to get stuff done, I soon learnt that I needed a sleep routine even if it was during the day! I wonder if your body feels the bone pain more because you’re awake at night? Perhaps changing the time of day you take your medicines might help? Talk it over with your doctor I’d say, and make sure they know how much pain you’re in and how it’s affecting your daily/nightly life.
Let us know how you get on please @luke01, and do check around the forum for others with Myeloproliferative neoplasms (MPN) who’ve had bone pain.
My venesection appointments have gone from once every two weeks to once a month as my bloods are under control at the moment.
I currently dont go the the gym as much as i use to, i go swimming more now, but maybe should think about more slower exercises.
I spoke to my nurse team about the pain and they said its part of MF symptoms, i use to work for royal mail for 5-6 years and done alot of walking over that time, me and my GP just thought it was shin splints but the nurse’s say otherwise.
I feel alot better now they have put my dosage of injections back down to the original 45 microdose a week.
I get about 4-6 hours sleep a day while im at work, but when im off i suffer with fatigue alot and fall asleep quite often if im just chilling at home.
I will speak to the nurse to on my next appointment and see what they say they can do for the pain.
Thank you for the help i will definitely give the number a ring when i get some spare time.
Yes it was alot to get my head around and still is.
I did speak to my nurse team about the pain but the did not mention anything about prescribing me medication for it.
I think where i am quite young they dont want load lots of medication on to me, they always seem sceptical about moving me onto diffrent medications and giving me more due to my age.
Sounds like you’re doing great stuff @luke01 with the swimming and sleep routine and even checking stuff over with your specialists is a positive sign. As your blood cells are under control and venesections are monthly now it would seem treatment is helping, what a relief! All in under a year, well done. For my Polycythaemia vera (PV) I have monthly bloodlettings booked in for when my haematocrit is above 45 %, but usually they happen every 3 or so months now.
Swimming is meant to be one of the best forms of exercise isn’t it, easier on joints but using many muscles. Sounds like you don’t get the dreaded Myeloproliferative neoplasms (MPN) itchy skin from being in water, so that’s one less symptom to deal with right?!
Remember that our treatments are meant to make life easier, and an inquisitive, caring doctor would want to minimise any discomfort if possible, regardless of age. What I’ve had to learn is not to push through pain but to ask for help, much as I hate leaning on others. It’s okay to change medicine even if your specialists tell you pain is to be expected with the one they’ve prescribed—they’re not the one living with the pain, after all.
See what you find around the forum regarding other treatments for MF and Myeloproliferative neoplasms (MPN). I take hydroxyurea and aspirin and they seem to suit me fine, but I’d swap to a different cytoreductive medicine if mine stopped helping.
Hi @luke01 I am so glad that you have posted again.
I have come late to responding to you and others have given all great different responses.
Blood Cancer UK have a lot of information on their website.
I attach some information on money and work and mind and emotions for you Blood cancer: money and work | Blood Cancer UK Blood cancer: mind and emotions | Blood Cancer UK
I am a great one for talking to my specialist nurse or medical team and I have found them very helpful with symptoms and any supplements I might consider taking in case they react with any medications.
Please do keep posting how you are doing, we will be about over the holidays and be very kind to yourself
Good Morning @luke01,
That makes complete sense about not prescribing any more meds, however the team can help you manage this pain, so definitely worth a chat to see if there is anything else that can help.
Having read your further replies it sounds like you are doing all the right things to help yourself as much as possible which is great. I have seen that you have mentioned fatigue, I have linked in this ask the nurse thread for you as there are some great hints and tips on there for managing fatigue - Ask the Nurses - Managing fatigue - General chat - Blood Cancer UK Online Community Forum