New to this

[Missy43]

Newly diagnosed with MPN and started on Hydroxyurea 500mg twice a day. How soon do side effects start? Hate that I may have them bit want to be prepared.

I have been fatigued for so long, high platelets??, and hopeful this drug won't compound this.

So appreciate voices of experience. Thank each of you and wishing you good days.

[mhos61]

Hi Missy43,

Welcome to our friendly forum. I’m sorry to hear of your diagnosis, which MPN do you have?

In relation to your question; I didn’t have any side effects to Hydroxyurea other than the beginnings of mouth ulcers which didn’t fully materialise. You may be lucky too.

Mary x

[piggie50]

Hi Missy43,

I have been on hydroxicarbamide for over 4 years and have never had any side effects. Not everyone gets them. It’s quite a strong drug and starts to lower platelets almost immediately so I would imagine the side effects would start quite soon as well. I do get the occasional mouth ulcer but I used to get them before anyway so I do not blame the hydroxy for them. I feel very lucky and hope you will be too.

Best wishes

Judy

[flfair in reply to piggie50]

Check out Magnesium deficiency and mouth ulcers.

Peter

[Superwoman]

Hi Missy43, I have been on Hydroxycarbamide for well over four years now and so far so good, OK when I first went on it I had a couple of problems nothing to shout about, but after a couple of months I really did start to feel a lot better in myself, and now my platelets are all in the normal range long may it last. Providing you drink at least two Ltrs of water in a 24 hour period eat well and keep fit this is all you really need to do.

I take my tablets in the morning after my breakfast some people take them at night so if you do get any side effects you sleep them off,, I have now planted my ET to the back of mind, OK if I overdo things I do then by the evening get somewhat fatigued but I can now cope with it by resting my body and mind, when I think about how unwell I was for years before my diagnoses these days life is so much better well controlled with the Hydroxy and Asprin.

I cannot speak for the others on our forum but life for me has certainly improved. Our life expectancy is in the normal range I hope this helps.

Jean

[Karol_Rua]

Hi, while I'm not on hydroxyurea as my blood counts are all very low, I took it for over two years with NO side effects. Don't look for them, don't read the list of side effects. Take your meds because you need them and just live your life. Don't look for problems or stress about what might never happen!

[Chris3875]

Hi Missy - I've been taking Hydroxyurea since February (geez, where has the time gone!) and am up to 3 per day. Platelets are VERY slow coming down from 2,000+ to now 1,100 but for all that time I have had no side effects and have felt very well. On occasions, after a busy day, some fatigue, but hey, I am 70+ so I don't think that is too unusual.

[Raphael_UK]

Hi Missy, I’ve been on Hydroxycarbamide for 18 months , apart from when I first wake up, no real side effects. I wake in the morning as if I’ve been drinking the night before, so have a bit of a hang over but as soon as I drink some water the head ache goes away. Make sure your hydrated. Hope it all goes well. Raff

[flfair]

Hi missy, Magnesium will sort your fatigue, keep off mag Oxide.

Read this

westonaprice.org/health-top...

Peter

[Rachelthepotter]

Hi Missy43

I have ET/MF and couldn't tolerate hydroxy at all: it did get my platelets into normal range quite quickly but I got bad anxiety symptoms ( I have also reacted badly to steroids in a similar way in the past). Individual reactions vary, but if it works for you that’s great. Welcome to the forum: it helps.

[Stephen399b]

I was diagnosed with ET 20 months ago after a range of symptoms. Started on 3xHU/day slowly reduced as platelets reduced and now on 10 per week. I have really had no side effects (other than a bit of paranoia by Google, but we all get that!). A bit more tired, but thats the condition I think rather than the meds.

I still do a senior job and am active. I honestly feel better than I did for the few years before the diagnosis, although I didn't realise it at the time.

#Drink plenty of water, stay active and I hope and pray you have the same experience. Happy Christmas.

[CurlyKale]

Hi Missy43,

I have ET and have been on Hydroxy for a year or so. The only thing I've noticed is a bit of constipation. I did think my periods were affected (either late or missed altogether) but I'm not sure now if it's if because I'm approaching that age! - I'm now 49? Who knows? but either way I certainly don't feel any different.

After a while it won't be on your mind so much and will just be part of normal life. Try not to worry and if anything does arise, just ask at your next appointment.

Take care now and Merry Christmas