I don’t post on here very often but I do loiter a lot.. 😊
Today, almost 9 years to the day of my ET diagnosis, I’ve collected a prescription for HU.. It’s been a good run to go this long without meds (mainly because I’m asymptomatic but also stubborn!) so I finally gave in this morning when I saw my lovely consultant. I’m 66 and blood count is in the high 800’s so I think I’d be daft (he thinks so too) to keep putting off the inevitable.
But I’m scared. Your encouragement would be much appreciated and any suggestions you can throw my way, oh Wise Ones.. Good news stories would be great but no holds barred advice even better!
Looking forward to meeting fellow MPN-ers at Newcastle tomorrow afternoon.
Thanks for listening, I’m really grateful for your time 🙏
Jayne
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JaynieQ
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Great timing for meeting tomorrow. You will get lots of support there.Meanwhile , I would think you have seen all the advice about anti inflammatory diet,
Drinking lots of water etc.
If you are interested and can afford to , maybe see a functional dr. It really can help to take certain suppliment s .
It does sound like it is time to get on with the cytoreduction. I found that whenever my PLTs neared 800 or more that I experienced bothersome excess bleeding and bruising. It was quite annoying and had more serious implications. I had a type of brain tumor that does not usually bleed internally but this one did. While I cannot prove it, I suspect that my higher level of bleeding back then may have contributed to the issue. It is no longer an issue now that the thrombocytosis is better controlled.
You will hear a variety of experiences with HU, ranging from effective/tolerable to refractory/intolerable. I am one of the latter; however, my experience does not predict yours. We are all different in how we respond to the medications used to treat MPNs. The only way to know your response to HU is top try it. You can always change to something else if it does not work. Hopefully, the Pegasys shortage will be resolved and that will be an option if you need to try it.
There is some helpful information to have regarding HU.
I was very lucky not to have to start hydroxy for 25 years. I was diagnosed when my platelets were 600. I did not go on medication until I got symptoms.My platelets were up to 1700 for many years, but they were stable at that amount and my doctor said as long as I did not have symptoms I could wait. It was my decision to wait and fortunately I was OK. I have been on medication now for about 2 1/2 years. I held off because I was so afraid of the side effect of hydroxy. I know it is not safe for everybody to wait that long. I was just fortunate that I was able to wait.
My platelets were in 500s when I was diagnosed. I was put straight on to hydroyurea Wish I had known what I do now I could have had years just on aspirin
Totally understand your reticence but please don’t be worried - I have PV and took HU for 16 years ( I m 70 now) Not one side effect until last year when I had a few little actinic keratoses on my face. They were easily treated with Efudix cream.
I m now on ruxolitinib ( excellent drug) but would happily take HU again given the opportunity and no keratoses. Best wishes Louise
Your encouragement and kind words are much appreciated Louise and I’m very glad you are well. I’ve never forgotten the kindness and understanding you showed me after I was diagnosed - thank you so much ❤️
Hi, Dont worry ! I am in very similar situation (Male 67). 10 years with PV and started on HU about two years ago. All fine and I recently upped the dosage to 1000 mg per day. Health is really good and even my itchiness has subsided in recent months. So many people come onto this site who seem to have side effects they publicise. Remember most do not and most are happy. The silent majority...We are so lucky to have the drugs that science gives us and HU is an old and very reliable one. I still have phlebotomies but I think this simple procedure is a small price to pay for good health and not a huge cocktail of drugs.Good luck...
Hi Jayne, I've been on Hydroxycarbamide for 16 years, and tolerate it very well. You will meet lots of people at the forum today who are taking it, so hopefully it will help you to speak to them. Looking forward to seeing you later. Maz
I tolerated hydroxy really well for over 12 years. Taking first tablet ever was traumatic lol But when I stopped taking them I felt bare and lost without them Hydroxy was like having a friend helping my ET
Hi Jayne, it was lovely to meet you as well, so glad you enjoyed the forum, it was a good one and we are always made to feel to welcome in Newcastle. Got home ok, train was packed and cramped, but I did at least have a seat. Best wishes. Maz
Gosh.. what fantastic advice and encouragement! Thank you all so much. I’m trundling along to Newcastle on the train, looking out at the beautiful scenery and feeling more positive than I have in a long time. I’m very grateful for your kind words.
I really enjoyed it and felt supported and encouraged by everyone I spoke to. It was amazing to finally meet other MPN-ers and feel less alone with this rare, puzzling condition! Hope you can make the next one magical7 😊
Don't be scared I was like that I was diagnosed with et jak2+I couldn't stomach aspirin even baby aspirin so was put on dypridamole no worries but 1999 was so sore thought was chewing gaviscon for fun but I was lucky I soon after that saw my consultant I told him how sore it was to breath I got a CT scan but because it was the November had to go through Christmas and new year in pain so as soon after holiday I phoned the doctors for my results and cheeky she had said it was Christmas and new year I said I got it back in early November oh she said you have to come and see my GP got appointment right away and she told me I had a clot on the liver saw my consultant and told me choice of Hu or interferon but read bad things about it and first question will I lose my hair and said no I got put on alluproniln as gout was a side effect and nausea which I am on domperidone started on one Monday to Friday and two sat and Sunday but now worked well I am on one a week I have never looked back best decision yes put paid fiance mum wanted grandchildren he was a mummy's boy and finished with me but Hu through time has been a game changer for me Stay safe
I am nearly 75 with PV and on HU for 3.5 years. No problems that I know of, I do get more fatigue than I did 5 years ago but I am 75 now. Everyone is different in how we respond to medications so all the differing opinions.
Personally, when I read about the possible side effects to the interferons, they scare the H out of me compared to the relatively minor ones I have read about HU. But again, we are all different. I was also hesitant to start but have had no issues thus far.
Thank you for your kind words of encouragement, Meatloaf9. Stay well! 😊
I was diagnosed abt 13 years ago JaynieQ platelets 500 was put on hydroxy immediately, wish I had known what I do now, think I got started in it too early. Happy for you managing until now. Hydroxy was brilliant for me, I found it hard to put it in my mouth at first, but it has looked after me, hope its your friend too
My platelets were 500 at my diagnosis of ET. I was age 60, so considered ‘high risk’ on age and Jak2 mutation. I was therefore put on hydrea which seemed standard practice. I sometimes think I could have got away with it for a few more years. But then again, I had bouts of ‘scintillating scotoma’ and a painful area under my left foot which both cleared after starting treatment. Equally, it could have been the aspirin which helped. Questions, questions!
Anyway, I digress. I have been on a low dose of hydrea for eight years, one 500 mg tablet Monday to Friday, it keeps my platelets in the 320/40 range. I have absolutely no issues with this drug and am happy so far to continue.
Thank you for your kind words, mhos61. I was very stubborn and just refused to take it. I’m asymptomatic and it just seemed crazy to take something that might make me feel ill… But age isn’t on my side now and I think that’s been the deciding factor.
Good to hear the HU suits you, even if you feel you could have waited longer. You are well and that is all that matters 😊
I'm Gian Piero from ItalyMy wife discover ET Calr mutation 1 year ago, she Is 55.
Her platelets number have always been until now, of 1 milion and 2 hundreds, without any symptom.
She has not Willebrands syndrom
There was one hospital that wanted to engagé her in a protocol for Besremi for ET patients right away, buy we were not agree as she for the Moment was not a risk subject:
- less than 60 years
- not more than 1.500000 Number of platelets
- not previous ictus situation
We have changed hospital and for the moment she Is assuming acetylsalicylic acid ( cardioaspirin), and the hospital team Is monitoring her with all analysy every 2 months.
Lucky you. I was diagnosed with ET 6 years ago and went straight on the meds because my platelet count was in the 1400s. I have been stable since, but my blood pressure is rising ever since. I started on 2.5Mg and now moving on to 5Mg, with my blood pressure still high. I hope it starts to go down soon. My iron levels are high too, so hopefully that isn't haemochromotosis, but I suspect it is. What are the odds of having two rare conditions? Maybe I should do the lottery. 😂
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