Updated , 12 wk appointment today , !!!

Updated ,                                                12 wk appointment today , !!!

Hi everyone hope your all keeping well & being kind to each other' ❤️

I was a bit disappoint today as not the results I wanted to here , my playlets have started to climb , I now have to take 1,000mg HU x 6 &

500x1 per day , over the last 2 reading my playlets have gone from 380 to 425 not a lot but being a high risk

( so the Consultaint tells me ) it's time to give them a helping hand ,

Had what I call the best DR in 3 years today

It's my 2 nd visit at this hospital ,

Lots of In depth discussion he was great

So glad I changed to a MPN specialist

Take Care

Love Pam X

13 Replies

  • My Hydrea has been increased too Pam,Everything up,inc plaquettaire which usually is low,so now 2 /500per 5 days 3/500 on two days. Must be something in the air!!!That is a lovely photograph.xxxSally

  • Thanks Sally he's my World is he ,

    9 month where's time gone , 💙

    I hope to Look as good as you do❤️ on that amount of HU ,

    Your one extremely pretty Lady

    Sending you very big warm hugs over the pond ,

    Love Pam x

  • Lovely picture Pam you look so calm and seemed to of soothed the baby, sorry to hear your platelets have gone up, it is not nice having to increase Hydroxy but hopefully your reading will come back down, mine did am now on 500gm a day and two on Sat ans Sun which is a 1,000 but my body seems to of coped OK, so let's hope yours does the same.

    Good luck


  • Awww THANKS Jean he's a little cutie X

    , I hope they take do a turnaround

    It's awful not been in control no matter what we do ,

    Fingers crossed there's no more side affect's I need to stay well , I'm looking after my little grandson in January 3 day a wk ,

    Pam X

  • My husband is going to see his consultant today he's on 1x 500mg hydroxy I think my husbands doseage may need to be increased as his HTC level keeps rising along with his platelets.

    The first 8 months was fine now he's needing a venesection every 3 months.

  • Hi Tracey I hope your hubby gets sorted today it must be quite worrying for you ,

    Best wishes to you both X

  • Lovely photo Pam. Would make a smashing xmas card, reminds me of Mary and baby Jesus!! You're not on your own with the rising platelets. I was at the clinic on Tuesday (only risen by 30), from 288 to 318. The nurse specialist is still leaving me on one hu Mon to Fri and none at the weekend. I'm back before Xmas....so we'll see.

    Good Luck

    Mary xx

  • Pleased you've got a good doctor who knows what they're talking about! They seem to be few and far between. The best one at the hospital where I go retired earlier this year. Hopefully your dose will come down as your platelets do.

    Lovely photo by the way.

    Lizzie 😘 X

  • Hi Lizzie ,

    I'm very happy I asked to be transferred to a specialist

    I feel so much better

    It only came about after I was given the news of my grandson

    I needed the best care to stay as well as possible for him,

    He's my world 💙

    Take care

    Love Pam X

  • Lovely photo with your little man Pam. Hope your count comes back down and that the new higher dose doesn't affect you too much. Karen x

  • Cheers Karen I couldn't imagine life without him , in 9 month he's given us so much Joy & love he's amazing ,

    I need to be well for him X

    Take care

    Love Pam x

  • Hope that does the trick pam. Great photo too.

    Glad you've got a great doc as mpn specialists seem to be few and far between.

  • Thank you Conno61

    I do count myself lucky having great Hospitals on our doorstep & specialist in MPNs , he was explaining how the cells produce & how long they last with the amount of HU in your body , and how long it would take to see results

    he was amazing ,

    and asked if I was attending MPN meeting in Newcastle next Friday which I am with my husband

    & he said he's going , 😜🙏

    We are very unique & complexed people

    Take care love Pam xx

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