I am a 67 year old New Zealander living in London and was recently dagnosed with Prefibriotic Myelofibrosis. Scattered symptoms for quite some time - tingling in legs, mild headaches and ringing in ears. Went to Africa on Overland trip for 2 months and dr sent me for bloods when I got back and my platelets were 1600. I had a bone marrow biopsy which led to the diagnosis. I have now been on Hydroxy for 3 weeks with no side effects as yet and after 2 weeks only a drop of 100 in platelets. Everything else fine at moment, am really active, work out 3 x week and do a lot of hiking and seem to be able to maintain this. Have always travelled a lot and mostly long haul so have been told to hang fire for now whilst treatment plan established. Does anyone else do a lot of flying and do you take any other precautions other than aspirin, movement and hydrating.
Am a Londoner and wondered if there was a Meetup group - would be great to chat with someone else who has the same issues - this seems to be pretty rare. I had not heard of it until I was diagnosed.
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kiwitraveller
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Hi and welcome to the forum. Maz, our wonderful coordinator can tell you about local groups. Thanks annual MPN forum is being held at Guys Hospital London this Friday, which is a great way to meet specialists and fellow patients. I know it's sold out but there may be a waiting list. Again, Maz is your contact.
Welcome, since having ET I have travelled from Yorkshire UK to Kenya, Costa Rica, India, Peru, going to Maldives in February. When touring I must have access to water and loos.
I’m in Canada - have ET - and just got back from a trip of about 6 to 7 hours flying time with no problems. As everyone says, drink lots of water. Heading to Mexico in Feb and I will have to get “out of country” travel insurance because of the diagnosis (it falls in the “cancer” category) which is annoying and an extra cost, but not horrid. I’m still going!
Hi again MIA insurance is for people with chronic illnesses, I was quoted triple the price by another company.If you read their statement it is staffed by people with chronic illnesses.
Unknown to me before I went to Peru they were on the rise because we tried to reduce my dose. Didn’t realise until a blood test a few weeks after my return.
So what I thought was altitude issues was that they were over 500. All they others are about an average of 430. X
Am on 500mg daily of Hydroxy have been on it for 3 weeks now and they have dropped 100 so now 1350. In May I was nearly 1600 but had no idea and had been just running off to the gym and hiking as usual - plus had squeezed in a 2 week trip to the USA completely oblivious😃
Before starting Hydroxy had a couple of odd days where I felt headachy and tired but thought it was hay fever- NOT. Sometimes had a mild headache but just made myself get out and do things. Since being on Hydroxy headaches have gone just get loud heartbeat sound in ears particularly in early morning which keeps me awake - anyone else get this? Is so annoying I try to drown it out listening to music.
It’s incredible how different we all are. I was very active but couldn’t understand why I wasn’t enthusiastic about my son’s wedding . Then whilst on a cruise I was doing little all day but in bed by 10pm putting it down to my age having an impact on me getting over minor day surgery .
My platelets were in the high 700s when diagnosed. After 1 hydroxi tablet a day and a week later they had risen to 802. Now I was struggling to walk. Yet you with high platelets were able to cope albeit you were pushing yourself just like I did. You were a ticking time bomb. I’m surprised you are on such a low dose.
Apparently tinnitus is a symptom maybe unrelated to your meds. I experience low level buzzing. I’ve mentioned it to my blood nurse and she said that if I can’t tolerate it to let her know. I’m under the impression there is something they can do. How old are you? Where do you live?
Hi Kiwitraveller, welcome to our forum. I am afraid that the forum is fully booked on Fri in London, there is a waiting list, if you could email me at maz.cd@mpnvoice.org.uk to let me know if you are interested in attending I can add you to the waiting list. Best wishes, Maz
Hi, yes the waiting list is closed at the moment, though I might be able to add you on later today. To hear about future events by email or postal letter you will need to register with MPN Voice, you can do this via our website
when there is any news about forums, drug trials etc I send out an email or letter to everyone registered with us, I also do put the information on the website and also on this forum. Kind regards, Maz
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