Just to say Thank you to Maz for her message about exercise even if you don't think you can!
I was recently diagnosed with ET and had HU for a few weeks, which I reacted badly to - and am now recovering slowly from that.
Yesterday morning I was out of breath just walking into the kitchen, but, remembering Maz's advice, I thought I would try an afternoon walk, and chose one of my favourites at the local National Trust property. I was not sure I could make the full round, but enjoyed the scenery. It seemed SO much further than I remembered. Then I passed a group of people I had passed a few minutes before and was puzzled. Long story short, I had missed the exit and gone round twice. I was very glad to get back to the car park, but slept well last night and have felt so much better since. Thank you Maz.
Second good news was that I saw the consultant this morning and he agreed immediately that I should not go back on HU. I thought I would have to fight to stop it. It was controlling the platelets nicely, but side effects suddenly blew up, and the cure was worse than the disease. They also introduced me to the Macmillan team, who have offered respiratory physiotherapy and tailored pilates sessions. I'm feeling hopeful for the first time in weeks.
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Leveret20
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Hi Leveret20, how lovely to read this, I am so pleased you felt better after your walk, and also that you have sorted out the HU issue. Best wishes, Maz 😊
Glad to hear you are getting things turned around. We do not all respond well to HU. Fortunately, there are alternatives for treating ET.
Also glad to hear you have accessed the Macmillan team, where I believe you can consult with a MPN Specialist. This will optimize your care for the ET.
Thanks. I stopped it 4 weeks ago, so that will make ten. I didn't ask why not interferon, I should have done. In the meantime I am going to use all the suggestions I have seen for reducing inflammation and hope that I can keep the platelets low enough not to need either for a while. Hoping that is not just a pipe dream!
Reducing inflammation will improve quality of life even if it does not affect platelet levels. It is definitely worth doing.
it is not too late to revisit Pegasys if that is what you would prefer. It just takes a call to your care team to let them know you want to consider it.
Do note the cost differences as cost can affect access. Approximate cost in US $.
Those prices! Wow! We, in the UK, take our struggling NHS for granted. True some drugs aren’t available on it, but not many. I certainly wouldn’t be able to afford the interferon I have just started.
Fedratinib = 100 mg (30 ea): $5,606 (note standard dose is 400mg/day=$22,424)
Pacritinib = 100mg (120 caps): $24,170 (note standard dose is 200mg 2x/day)
I am quite fortunate to have a good insurance plan. I am able to afford my medications once they are approved. Not everyone is so fortunate. Some have plans that require them to pay a significant percentage of the cost of any medication with no out-of-pocket cap. Some simply cannot afford their ideal treatment option.
We all share the cost via our national insurance contributions and also share the risk of needing less or more expensive medicines or treatment. Of course most rich people go private.
That is a good point. I was beginning to think I should accept the cheaper option to avoid putting more strain on the NHS, but that may not make sense on any level. The cheapest option for everyone concerned is the one that works - a cheap option that doesn't work so well will make more health care costs further down the line for the NHS, apart from the effect on the patient's life experience.
Hi Leveret20… I too have recently been diagnosed with ET and on HU .. it’s now just over 3 weeks. May I ask how soon did you start to have side effects and what.
Initially I felt very nauseated and sleepy.. I seem to have got over that .. but now I continuously feel bloated and generally blaaah. Digestively feel uncomfortable all the time . Have stopped eating bread last few days.. I mainly ate sour dough anyway. I’ve also noticed weight gain too…just started watching this and seems each day my scale goes up. I’ve increased my water and fibre intake and pretty much eat healthy.. maybe the very occasional treat. I walk a fair bit and try to be reasonably active. Am lacking in energy and stamina. Only real time I sit is in the evening for couple hrs. Also I’ve experienced some itchiness which I had not previously as haematologist asked. ( plus feel grumpy at thought of taking this medication… will this be lifelong?)
Hope you’re on the up and up after stopping the HU.
I was on hydroxy for 3 years without problems then developed extremely painful ulcers on my feet, it took a few weeks to get used to the drug. I know some people are on it for years with no problem. I was then on Anagrelide for years with no problem. Just started peg interferon as changed to MF.
Hello Stargaye: I had no significant symptoms for three weeks, except not tasting coffee(!). Around three weeks everything blew up - abdominal discomfort and bloating, constipation with loose stools, painful to urinate, having to drink loads and needing the loo every hour, varicose veins flaring up and capillary bruising on the legs, skin peeling off the fingers, then an overwhelming fatigue and brain fog. I had a consultant appointment at four weeks, and was told to stop for a few weeks and see if it settled down, and maybe my body would get used to it if we tried again.
I was so relieved yesterday when he did not suggest trying again. I have been basically "out of it" for the last five weeks, and just starting to feel human again. It did bring the platelets down nicely, but it brought me down, too. So glad that there are other options! It's hard to tell as it is happening - I didn't attribute all those things to HU at the time - the abdominal symtoms could have been a urinary infection, and I treated it as such. It is with hindsight that it looks like an effect of HU. It started improving when I stopped, and is nearly back to normal now.
Thanks for your reply and good to hear you are getting back to normal. I have appt with my haematologist next week so will see how the platelet numbers are. The fullness and bloating is not pleasant…will see how the next week unfolds.
Hi Stargaye. I was on Hydroxy for 6 months and had same side effects plus upset stomachs and generally feeling unwell. Couldn't get my platelets under control and so i was switched to Interferon 6 weeks ago. Bloating and upset stomach went in a couple of weeks. Fatigue is still an issue but not as bad. I hadn't realised how rough i was feeling on Hydroxy until i stopped taking it, although a lot of people do well on it.
I thought initially I was just imagining the way I felt. Good to hear I am not alone… will see what Haem has to say next Tues. l have been taking an effervescent Vit B supplement round midday and I find it gives me a boost of energy and helps with the fatigue. Some days though I do just have to have a short nap… an nothing wrong with that.
Good to hear you’re doing better now after changing treatment. Stay well 😊
Thrilled regarding exercise. I when feeling rough fight it for a few days then go to the gym and swim. I’m relaxed for the rest of the day and it slowly brings me out of fatigue. Wow Macmillian for respiratory physio, I’m really interested in that. I’ve had it on the nhs but it is considered I could be if it from more. Did you self refer?
No, the consultant sees patients in a Macmillan Unit in the hospital, so after my consultation the nurse introduced me to the people in the Macmillan information centre. I was bowled over by the support they offered.
Very well done. Not always easy to break a cycle and move into a new direction, particularly when you're not feeling well. I am so glad you made the effort. Wishing you many more pleasant walks in the future.
Yes! Keep exercising! I have been a lifelong runner. Since ET, there are days that I have no energy and getting out there and running (or walking) seems overwhelming. When I push myself to take that first step, I am nearly always glad I did . When I am done I feel better - tired, but in a better way (like my brain is more awake if that makes sense). Sometimes I think my daily runs/walks are the only way I survive the day.
Oh good news! It can be so hard to get moving, but I find it always brings an uplift. I also went off HU because of side effects, took Bomedemstat for about 18 months. I'm now however using Besremi and have to say i feel more like myself than I have in so very long. I'm excited about this and so are my friends who have missed me. Good luck
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