Grr Elevated platelets !

Hi saw consultant today , and as i feared HU hasnt lowered bloods! so taking 500 mg extra 2 days wek ,will see him again in 5 weeks ,bit disappointed but thats way it is eh sure im not alone in feeling this way . Regards Holly

[chrissie1959]

Hi sorry your count not altered but hopefully count will reduce now extra hydra x mine goes up and down i am on 1000 mg a day but took along time to be this low x good luck holly xx

[Phelpsy]

Hi Holly it takes a while to see the difference the HU is making ,

I was pretty amazed at my new consultant my last visit HU was increased he put pen to paper and worked out how long 2 extra tablets over the next 6 weeks would make a noticeable change

Very impressed i was ,

So what im saying is these things take time , but I'm sure you will get there

Big hugs my friend x,

[Hidden in reply to Phelpsy]

Hi Pam , yes i thought maybe blood test rather quick ,but i guess its good Dr keeping close eye on things . its frustrating to think , theres not alot we can do to help lower platelets in unison with HU , but Drs dont know either . I dont smoke or drink alcohol hardly . eat healthy most of the time , like chocolate thats my sin ! Thats good your Dr worked out what 6 week can do . Do you take yours in the evening ? yes i feel i need to give it time Pam thanks for advise love Holly x

[Phelpsy in reply to Hidden]

I take mine all at night ,

HU & Clopodogrel + Statin 's

I was sleeping slot so DR suggested take in evening I'm convinced it helps me get a good night sleep ,

As regarding diet I've changed since diagnosed , still room for improvement , But my annual readings are all good ,

I drink but not a lot , is get very uncomfortable after a couple ,

I do like chocolate 🍫

Your right there's nothing we can do to lower our blood count ,, But keeping a general well being ,

I'm back on slimming world

So see how I go x

Good luck to you for your next reading 🍀 X

[Hidden in reply to Phelpsy]

Thank you Pam xx

[Helen1952]

It all seems to be a balancing act Holly .

My platelets have come down on 1000 a day 7 days but so has everything else !

I asked to drop one for a month to see if it improves my reds .

Like I say a balancing act and everybody seems to react differently .

Hope the increase improves things for you

Xx

[Hidden]

Thanks Helen , yes i thought maybe my blood test so soon, wouldnt have made much of a difference and it hadnt in fact went up a tad ! Will keep trying to be positive and patient , not much more i can do .or any of us for that matter ,we are in there hands eh ,take care hope by dropping one pill a month will help you Love Holly x

[Superwoman]

Hi Holly, when I was first put on HU my counts were really high they would not come down so my Haemotologist decided to put me on 500 daily and a 1000 Sat and Sun and this was three and a half years ago, and these days counts are all within the normal range and doc is really pleased with me, only have to go to the hospital every four months. I dread the weekend knowing that I have to take a double dose, but my thoughts are if it works don't mess with it girl 😉 But I do make sure that when taking all my tablets I space them out by about an hour between each one, bit of a bind but I found this works for me HU being the last after breakfast.

Like everyone says they will come down just give it time. And you are not alone we are all here going through the same feelings one minute up the next down.

Jean X

[SuET2017]

Hi Holly, Awe it's tough isn't it. I want this fixed now and today as I want to get on with life (well I am but... whilst feeling somewhat unwell)

Im on Anagrelide rather than HU, but also my platelet reduction is slow, and frustrating, though it is coming down (in June I was 1300 and am now 890). I had to increase from 1mg to 1.5mg, which doesn't seem to have speeded up the reduction and have side effects again - nausea, diarrhoea, palpitations. But I am trying to be patient and positive that it is reducing and hopefully this is the right way to go.

Take care and hang on in there, and no you are not alone

[lizzziep in reply to SuET2017]

I'm also on Anagrelide, after being on hu for over 3 years, at first my counts went up, so my dosage was put up, I now take one in a morning and 2 at night, they have come down from 570 to 450 in 3 weeks. I saw haem yesterday and am staying on that dose for at least 8 weeks which is when I go back. My counts show I am slightly anaemic too. But they don't seem worried by that.

[SuET2017 in reply to lizzziep]

Oh wow that is great results. I take all mine (1.5) together. I tried taking at night but the palpitations and nausea kept me awake. Do you have side effects? If so how do you manage them?

[lizzziep in reply to SuET2017]

I got quite a lot of palpitations at first but they are gradually fading, they usually start about 2 hours after I take the capsules. I take 1 in a morning and 2 at night. I haven't had any nausea - so far.

[SuET2017 in reply to lizzziep]

Yes, I'm about the same. Take the tablets, then about an hour after the palpitations start - Ive kind of got used to it now. I do shake a bit at times when I have the palpitations, which can be a little awkward at work...

[lizzziep in reply to SuET2017]

I'm lucky I'm retired!!

[Nickthedevil]

It is a pain Holly and very frustrating but hopefully you will see a difference next time. Fingers crossed! Let us know how it goes. Karen x

[Hidden in reply to Nickthedevil]

Thanks Karen , fingers crossed eh x

[mhos61]

Hi Holly, it will take time to get the correct dose of hu, it's still early days for you.

Mary x

[Hidden in reply to mhos61]

Thanks Mary , your right , i did lthink having bloods done when i did maybe was a bit early xx

[Edgbastonian]

HEllo Catwoman

Sorry to hear of your disappointing visit. Despite slightly lowered platelets last visit i am in a similar position and will know on Monday whether Hydroxy will be increased. I will take a leaf from your book and go back to morehealthy meals. I only enjoy a glass or two of wine a couple of times a week and dont smoke. If only we knew more about where it came from.

Keep smiling grrr Hey its all in the game. Shirley

[Hidden in reply to Edgbastonian]

Thanks Shirley , good luck for Monday , hope all good best wishes Holly

[Hannah52]

Hi Holly I saw a consultant today at the hospital, I started on HU in June and my platelets were down just over 3 weeks later and have been going down every visit since. I started with them at 624 and today they were 356 but I take 500 mg everyday. I asked the Doctor when I could reduce them, she said she would want 6 months of the platelets dropping before she reduced the tablets.

[Hidden]

Hi Hannah , thanks for reply. yes i did wonder if my blood test was a bit premature i had only taken 8 pills , yes im on mon - Frid 500 mg now, so its good to know its working for you ,i hope mine go in the right direction next blood tests hope you feeling well best wishes Holly