Disappointed

[Mummyto4c]

Feeling so down just back from seeing my consultant. Plt count hasn't came down much so I'm up to 2 capsules each day also sent away for some liver and thyroid test as liver reading was up 🤔🤔

[jane13]

bad luck but hopefully b OK: no alcohol and lots of water??

[Mummyto4c in reply to jane13]

To be fair I'm always drinking water and don't consume much alcohol . X

[jane13 in reply to Mummyto4c]

O sorry didn't mean to b rude: sometimes easier to solve if u have got bad habits u can give up! all the best

[Mummyto4c in reply to jane13]

No you weren't thanks for taking the time reply xx

[lizzziep]

I don't know how long you've been on the drug (hu?) but we all react differently, sometimes it takes a while for it to get into our systems. I'm now on 4 Anagrelide a day, but my platelets are (mostly) under control. Hope all goes well for you. 👍😘

[Mummyto4c in reply to lizzziep]

I started on the 19 thJune was on one capsule a day then 2 at the weekend . It wasn't my normal consultant I seen today but he did say due to my past history I had a stroke 2 years ago he thought it was for the best . Also suffering from mouth ulcers and feeling so tired in other words I'm feeling sorry for myself xx

[Mummyto4c in reply to lizzziep]

I have been on it since June I think I just expected my dose to be decreased but feeling better today thanks for replying xx

[Tinkerbell13 in reply to lizzziep]

Hi LizzieP, interested you are on Anagrelide....my headaches were so fearsome, nearly drove me up the wall (and more!)....do you get them, too? Platelets now in 700's...how about yours? Know this is really about Mummyto4C, but was particularly interested in what you wrote. Best regards, Tinkerbell13

[lizzziep in reply to Tinkerbell13]

Hi Tinkerbell, I don't (currently) get head aches with Anagrelide. I get palpitations about 2 hours after I have taken them. But they are controlling my platelets a lot better than the hydroxy. Although they were up slightly out of range last week, mostly they are now in normal range. I was on hydroxy for over 3 years then developed horrible ulcers on my feet (peripheral neuropathy) which only cleared up when I came off the hydroxy and went on Anagrelide. x

[Tinkerbell13 in reply to lizzziep]

Thanks so much for reply and sounds as if you are doing well on the Anagrelide..I also had similar problems with Hydroxy - and more! Palpitations sound 'livable with' but hope not too hard to put up with. Very kindest regards, Tinkerbell 13

[Aime]

You are allowed to feel sorry for yourself. Give yourself a treat, you deserve it. Sending you lots of E hugs and wishes for what is I'm sure is one of those temporary stops on the roundabout we're all on.

Thinking of you and kindest regards Aime xx😺😺

[Mummyto4c in reply to Aime]

Thanks Aime xx

[eire]

You poor thing just so disappointing for you. The next time you go it could be a lot more positive these MPN's are like a roller coaster. Having mouth ulcers as well it's no wonder you feel down. Once they get the meds sorted you will feel better but there usually is a kick in the b#m now and again for us all. Mum to 4 is challenging I so hope things improve asap for you.

Pat

[Mummyto4c in reply to eire]

Thanks Pat feeling more positive today xx

[katiewalsh]

Hi. You may only need high dose for awhile. I was also on two a day but now need only one. You have every right to feel bad for yourself. For mouth sores I do the following:1). Take HU WITH LOTS OF LIQUID IMMEDIATELY (so pill residue is not sitting on your mouth surface) and 2) rinse your mouth out, swishing a solution of 1 teaspoon salt, 1 teaspoon baking soda in 16 ounces of water throughout the day. Try and keep the liquid in your mouth for a minute or more. Good luck. Katie Sending e hugs

[Mummyto4c in reply to katiewalsh]

Thanks Katie I have made up that solution to start drinking today . Your advice was greatly appreciated xx

[katiewalsh in reply to Mummyto4c]

Oops. You shouldn't drink it. You should spit it out after using it. And if you mix it in a clear jar just put the cover on or cover the glass so you don't have to mix up new batches each time. Let us know if it helps.

[cwayman11]

Big hugs xx

[Mummyto4c in reply to cwayman11]

Thanks xx

[tatty123]

Hi. I'm so sorry to hear that and know exactly how you feel. Things will improve but it's so hard, at times, to keep your chin up.

I've taken different doses of HU over the last 3 years according to different factors.

For the last 10 months I've been on 3 per day and wow did that make me feel tired, gave me lots of mouth ulcers (on & off) and made my hair thin. These 3 factors made

me feel very low at times.

The reason for the high dose was because I work in a school and the particular year group I worked with, at times, seemed for forget about germs. As a result I kept getting run down and my platelets wouldn't

come under control.

I've just recently been lowered down to 2 tablets per day and am over the moon. My

platelets are at their best level ever since knowing I've got ET. I feel a bit more like me again.

Try to stay positive and on those days where you feel a bit down, try to find something to laugh at every day. I did that and it really does help. Laughter truly is the best medicine.

Sending lots of hugs.

Natasha

[Mummyto4c in reply to tatty123]

Thanks Natasha I to work in a school and have just started back this week after my school holidays. I'm a little scared that I'm going to be tired and have to take time off although I've been assured that won't be a problem. My joints are so sore atm and I feel I'm constantly dragging my legs. Thanks for the advice x

[tatty123 in reply to Mummyto4c]

It's good if you have the support of your school, mine is pretty good about it. Although, I do get through the day and flake out as soon as I get home if I'm having a bad day. Lots of rest at home does help.

I hope the pain goes soon. Xxxx

[Sand-Dancer]

Hi Mummyto4c. First of all please don't be sad with your results. It can take a little while to get the HU sorted. I am on two a day and have been for about three years. It just took a little while of trial and error to get there 😊. Once they get your medication level sorted you'll be fine I'm sure. I just go with how I feel each day and get on with my life and once you sort those awful mouth ulcers out I'm sure you can too. Lesley x 💕

[Mummyto4c in reply to Sand-Dancer]

Thanks Lesley feeling more positive today yesterday was just a bad day ❤️❤️

[harleydavidson]

Thinking of you x