Hydroxy on the rise

So I am now down being looked after the team in Bourenmouth Hospital....like first thing they did when they too over my care was to reduce my Hydroxy to 5 a week....they couldn't work out why I was on 7 a week as my bloods were all in range......platelets although slightly low.......so I was back for routine last week.....Hydroxy is back up as all my bloods have decided to go all over the place.....my new Dr now understands why I was in 7 a week 🙊

Anyway after being prodded and poked and being told my spleen is a little larger than before and my liver is bigger too I have been told the wonderful news that I don't need a BMB. Apparently on the Majic trial it is optional.....he said there is no rapeason to do it, especially as I'll need to go on a bridging programme with the warfarin. So high fives all round.

I am waiting on a call back from the emergency dentist though.....my mouth has swollen and my tooth is in agony.....my arm feels like there is pressure going all the way down. So hopefull I get to see someone very very soon.

So happy Monday you lovely people!

12 Replies

  • Not happy for you Chelle,hope you get sorted soon,Good Luck with all.

    It is trial and error with Hydrea isn't it? Keeping the right dose is difficult,I find the same thing,reduce and up go the bloods,increase and bloods are better but I feel worse!!!15 per week at moment! Hope all goes well for you.Best Wishes.

  • I have an abscess :( but yes it is trial and error I was good until I had to have a braiding plan for a BMB about a year ago and since then everything seems to change with the smallest of emotions....whether it'll be stress/hormones etc.... Do you ever wonder if you'd never been told that there was something wrong you'd have just out it down to being tired?

  • Yes I do wonder, if I had not had the JAK 2 test done that I would of been none the wiser and just gone on thinking that all my symtoms were age related and my hormones, also stress can do funny things to your body no matter if you are a man or woman.

    I take nine Hydroxy a week, plus all my other tablets, sometime feel I rattle, but if they are going to keep me going I don't mind.

    Roll on summer, so I can get out into the garden and blow the cobwebs away. 🌞☀️ Makes you feel so much better when the sun shines don't you think.

    Hope the abscess does not give you too much grief.

  • I do remember Chelle,thinking I was tired all the time thru trying to do too much before a near collapse when seeing a local G P when at our French home,who immediately hospitalised me,undoubtably saving my life.....my hematocrite was over 80,they could not get the thick blood from my veins!!

    Six years on,any stress throws me,feel utterly depressed and frustrated when I can not get on with things,

    Hope the mouth heals quickly and you don't need anti-biotics,we have enough to deal with.....good luck with it all,Pensees Chaleureuses,we say here !

  • Meant too add. My plaquettes are below normal at the mo,wonder if it adds to fatigue and general 'unwell'feeling.See consultant Friday,no doubt find out then.

  • Hi all. I can't help agreeing with points you are all making. I am on 16 capsules of hydroxycarbamide a week, blood pressure tablets, aspirin, simvastatin, pantoprazole. I have just come off fluoxetine so that is one less tablet a day. I feel I go bravely on trying to ignore all the "embellishments" of my pv. I keep my diet right. I deal with my sore mouth and tongue as and when inflammation arises. My hiatus hernia has been giving me gyp lately. Then when the body and extremity aches and pains join the chorus I really do wonder. I was not delighted to get my diagnosis in 2011 but was relieved that I would not be looked on as a hypochondriac any more, or, the woman with the longest lasting hot flushes and menopause in the Western world. Well even that doesn't seem to follow through any more. I am told I am well and tolerant of the hydroxycarbamide. That's what they think!

    I know we all seem to have good and bad spells and we seem to all be of the opinion that we just get on with it. Which is the only way after all ...but its when we have the bad spells that we really feel our mortality and wonder if our disease is progressing. Then the relief when we seem to get better again. It sometimes feels like the sword of Damocles hanging over us. This stress must surely affect our already finely balanced blood levels.

    We all need a wee moan now and again and the best people to inflict it on are all of us going through similar tribulations on this very special website. Jeez o it does wear you down. But never mind, we do get it off our chests don't we?

    Happy days all and wishing Jedi and Twinkly speedy recoveries. Love to us all. X

  • I know what you mean about the sword of damocles! 😳 In the dark of the night when you don't feel so good all sorts of stupid ill founded thoughts enter your head. Then if the sun is out in the morning you feel so much better.

    Joining in your good wishes for Jedi and Twinkly 😍

    Best wishes


  • Have you needed any venesection while you've been on hydroxy?

    My husband has been on 1x 500mg daily since Oct last year.

    His hct is slightly creeping up so his next visit in may he will need a venesection he's gone 8 months without one.

    He was having monthly venesections so the hydroxy is doing the job


  • Thats wonderful news

    Thinking of you

  • Hi,

    Just a quick add on.

    PLEASE do not ever ever worry about having a bone marrow biopsy.

    I had one in November at guy's and it was painless, just a bit of pressure on my hip.

    I worried for weeks beforehand having heard loads of scaremongering stories and my angst was totally needless!



  • Chelle, good luck with your infected tooth - I know that pain only too well and sympathise totally. I suppose you know about the hot water and salt treatment - it does help.

    Was up at Guy's yesterday (thought of you)

    and platelets OK but the wretched white cells spiking and I think that is because of boil I am just getting over and what with one thing and another they felt it was right to increase my Rux a little. They are so kind up there but I do feel exhausted the day after a clinic visit - thank goodness the sun is shining as I am going to walk by the river and let my vitamin D levels rise!

    Take care

    Also thinking about Jedi and Twinkly

  • Poor you Chelle, nothing worse than toothache x

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