I just want to ask is anyone on hydroxyurea that is around the 50 age mark ? Or do you defo not get put on it before 60. I know they are not keen before you are 60 due to other risks that come with it. Surely bringing my platelets down and reducing the risk of clot is better short term answer ?
My platelets today are still rising now 1222. Im having 2 day blinding headaches with flashing vision. Have been seen by ophthalmology and all is well there, apart from the start of cataracts. Will bringing my platelets down reduce the headaches ? My hematocrit is now normal too.
Best wishes lainy 🤗
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Lainy1
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I was diagnosed in 2011 at 48 my platelets were just over the mill. My worst symptoms at the time were migraines, taking me off my feet for days sometimes. I was really apprehensive about talking Hu but my migraines went and know I only have bad headaches very infrequently. My issue now is fatigue, iv not been in work since January. I'm still trying to mentain my energies throughout the day. Hopefully your local hospital will be more helpful
I have been on Hydroxy for 3 years I am 36. I have a blood clot already and have liver cirrhosis. My platelets hover about 100 which isn't ideal. I am on Warfarin to stop my blood from being so sticky and Propranolol to slow it down. I suffer with headaches - not migraines. I do suffer with dizziness - well almost to the point my legs stop working...
I hope whichever way they medicate you is good for you!
It's on the 3rd July. He is going to sedate me for it, I told him how much I struggled with it before!! There getting me to do it to see if the scarring has got worse...and if they can clarify whether I have progressed or not! x
Hi my platlets are around 1000 and my consultant is keen to get me on hydroxy however I'm not that keen. I'm 45 have no symptoms apart from the occasional dizzy spell. I have PV. Are your headaches definitely a symptom of your condition?
I have no idea, imjust going by what symptoms other ET sufferers have. I wonder how high they would let it get before treating it. Quite worried about having a stroke DVT TIA or any kind of clot within my body. I've only saw a hematologist once as an urgent appointment now he is passing me onto my local hospital as it is much closer to where i live. He did not really say much apart from "what do u know about jak2 +ve" said only what I've read online. Thought it was his job to explain all about it to me.
I'm sorry for rant, but im just worried. And still no BMB results yet either.
Hi yes I find that you have to ask questions as there is no one fit solution, and they won't necessarily give you all the options I'm just speaking from personal experience. The NHS is underfunded and under resourced, so we need to ask the right questions to the consultants. Best of luck. Jb
Hi yes I went on HU when first diagnosed in my mid 40s as I had very high platelets. I have ET. Never regretted it either as although it takes adjusting to being on the meds as with anything your body needs to adjust to it - but it's kept my platelet levels to good or reasonable levels for the last ten years - and all the protection that goes with it so if you do need treatment at any point it's really worth considering going with it. It certainly aided the effects I was having headaches, migraines, visual disturbance loss of balance etc. Hope you have a consultant well versed in MPNs as that is the main thing as each case is individual and so they will look at your own particular situation and pattern of disease. All the best.
I too started hu when 43 and adapted to it and it served me well for 10 years preventing clots. It is hard to know whether the fatigue is of the ET or from the drugs or a combination- pacing yourself is important to allow time to adjust. Hope it goes well for you
Hi, I started last year aged 45 when diagnosed with ET JAK+ considered high risk due to having 2 separate blood clots in 3 months in my spleen. The highest my platelets have been was 480, now down to 280. I had been suffering terrible headaches before diagnosis, very rare if I get one now but do suffer slightly from the fatigue, as we all know we are all different !
I opted for interferon in my late 40's and am still on it. My new heam would like me to change to hydroxy due to very low ferritin and cost of interferon but it works for me and I'm not ready to start hydroxy. My platelets are now 353 and heamatocrit 41. Still get the headaches but I think that is the nature of the beast!
Hi Lainy, many factors are taken into account when any medication is prescribed for MPNs, it is not just based on age, the haematologist will consider your blood counts, your current and past medical history, any family history of clots, heart attacks, etc, your current medication for any other medical condition you may have and any symptoms you are experiencing, the haematologist will assess all of this information and then make a decision, so if for example you don't have any symptoms, your blood counts are low and stable and you don't have any health risk factors it would be likely that you wouldn't start Hydroxycarbamide until you are 60, however, if you do have any risk factors, symptoms etc then it would be considered and prescribed. We are all very different when it comes to our medication, there is no 'one size fits all' approach to medication, it is very individual, I was prescribed it when I was 48 because my symptoms of fatigue, dizziness and head pain were impacting more and more on my daily life, I had no other risk factors, and since being on them my quality of life has improved greatly, I do still get days when I get the fatigue, head pain and dizzy spells, sometimes for a day, a couple of hours, or worst times, for a week at a time, but these bouts are few and far between. So listen to the advice of your haematologist and ask questions, it's a good idea to write your questions down before you go, and try and take someone with you to the consultation so that they can also ask questions on your behalf but more importantly, remember something that you might not. Let us know how you get on. Best wishes, Maz
Good news today for a change, BMB does not show any fibrosis.
Heam put me on 500mg hydroxyurea. I've to have a brain scan (if she finds o e to scan that is) and I've to have e CT tomorrow of carotid arteries. Platelets today were 1450 previously were 1222.
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