ukadultitpregistry.com

[morag]

Hi everyone,
Its been very quiet lately, my computer was playing up for ages so I havent been on much, but I have a new one now! Hope you are all ok, I am enjoying this heatwave Platelets not so good they went down to 12 I had a few bleeding problems, mouth and nose and loads of bruising again so im on 10 steroids a day yuk! back at hospital Monday.
Love to all

Morag x

[ted23151]

Hi Morag,
Sorry to hear you are having a bad time, with you not posting I thought the Rituximab had kicked in. I am glad I don’t have your bleeding problems.
Good luck, I am thinking about you.

Ted

[morag]

Hi Ted

Good to hear from you, Im ok with it all at the minute, It could be worse!
Hope you carry on ok too.

Love M X

[serena]

hi Morag and Ted. hope you both ok at the moment.
not been on in ages having work on house and stuff like that.

hope to catch up soon.

[ted23151]

I was OK till I had my bloods done on Thursday, Didn’t get the results till Friday.
Platelets 35, down from 64, 10 days ago. That’s the lowest it’s been for 4 months.
I am having my bloods done again on Monday, even a rise to 36 will make me happy them I will know it’s going in the right direction. On Friday I was a mess, was so frustrated with the drop, over the past week I have kept banging into things, my right arm has 5 deep purple bruises.

I am waiting for an appointment with my haemo, should be seeing him next Wednesday but someone at the hospital appointments has cocked thing up and I don’t have one.

My peace has ended; Josh my 19 yr old is back from a week in St Ives.

Take care all of you.

[serena]

thats not good news Ted.(about the count).
hope your going to kick some butt later to get your appt sorted.they will def have to see you after such a drop wont they?

hows the smoking going?or isnt it?lol

Morag.hows you count going are the tablets working for you.

since finding out about aspartamen on sat i have cut it out of my diet as best i can and im just going to wait and see if it helps at all.still good count of 70 as of last wed.

does anyone know how Ann is?

[morag]

Hi Everyone,

Hope you get on OK today Ted, nice to hear from you and Serena again
Ive got the hosp again this afternoon, my count was down to 11 2wks ago, the steroids are not keeping it up much and ive also been on azathoroprine for 2 wks, I dont know if thats done much good either as I had a big nose bleed yesterday. Has anyone had any success with azathoroprine?
Will catch up later.

Morag

[Ann]

Hi Morag, azathioprine can take three months to work so don't give up yet.

[Rhiannon]

Can't help you there with which medicines am afraid as only ever been on Steroids and intravenous immunogloblin which takes a few days but always have work. (Oh and a full blood transfusion sometimes to deal with the anaemia levels)

[ted23151]

How did you get on at the hospital Morag?
My count yesterday was still 35, the haemos secretary phoned this morning with an appointment for tomorrow. Cant make it tomorrow so made one for 1st September.
Good luck with the azathoroprine

Serena I am still smoking, I have 2 full 75g jars of sweetener (aspartame) which I use on my cereal in the mornings. In future I will try and get saccharine.

Its nice to see the forum being used again

[morag]

Hi Ted and every one

Platelets were 20, he said its early days still to tell whether its going to work or not, like Ann said it could take a while, Im not convinced, I had all this waiting after the rituximab and that didnt work, I seem to have a bleed from somewhere every day at the minute and being on the steroids too is making me so depressed, got to see him again a week on Monday.
Yes Its good to have the chats going again It has been quiet for too long.

Take care

Morag