"I AM BRUISE LEE"

[toolski]

Hi i am a 38year old capetfitter from scotland with a platelet count which most of the times doesnt even register when i have my bloods checked,i found out i had this condition after having a realy hard week at work with bumps etc and then playing five a side football at the end of the week and being hit full on with ball a few times my body looked liked i had been beaten up by mike tyson and van damn,so i thought i would get myself checked out as i was covered head to toe in bruises,found out i had this stupid condition and realy thought my world was ending in a matter of minutes i went from being carefree to how long have i left to live...i was treated with the usual suspects steriods,platelet,immunaglobulins etc and was told to have my spleen removed(which i refused) and i am glad i did,after being probed and pricked to many times to mention i gave up with any further treaments etc and just get on with my life as usual although in a more bruised condition,but hey ho thers a lot worse off people in the world than me lifes too short to hold a good man down so onwards and upwards,i think it deffinetly has something to do with your diet or something thats triggered this hopefully someone will work out what it is,my mates have a few nicknames for me now like bruise lee and bruise almighty lol dont let it get yous down,so good to have a forum with others who suffer this irritating condition

[Lynnek]

Love your comments - made me smile

I'm in the same mind, get on with life just be a bit more careful.

My friends want to join the dots (bruises)to see what picture it makes xx

[toolski in reply to Lynnek]

he he need to try this one,if you let it get to you too much everything else in your life gets affected too,its hard but staying positive and being as upbeat as you can seems to be better all round and maybe soon they will find out what the cause and cure might be x

[sailor]

Hi Toolski,

I like your attitued and whole heartedly support it. Life is too short to let it get you down, providing you are not a bleeder. I have lived with a count of 10 for about 10 years, no medication, still have my spleen, and just get on with life with a little caution here and there. When I meet people I do not know and they look at the bruises, I blame my wife for beating me. You certainly get some interesting looks!!!

All power to your elbow and I hope you will become a regular contributor and supporter of those who suffer. Are you a member of the ITP Support Group. If not, why not it is free ( although any contributions are gratefully received and applied to research ). You, Lynneck and I are obvioulsy all of the same mind.

Keep in touch.

[rjsmyth]

I am 59 and my hobby is riding motorcycles (I have a Kawasaki ZZR1400)- not a good idea with a low platelet count - went through exactly the same as you - missed out on a lot of things. Eventually after an appointment with Dr Drew Provan, scrutinising the NICE guidelines I pressurised my PCT into giving me NPlate - so far this has proved very successful - no obvious sided effects - and my count stays above 100 with fortnightly injections administered by myself - so I am able to ride my bike and engage in other things that would be unwise with my previous low counts.

[NickyD]

Hi Toolski My husband uses my blood counts as numbers for the lottery - we are yet to win the millions but still keep trying. NickyD

[Vibo]

Just want to say I've been finding all of this difficult to deal with - sooo glad I found u guys!! You have all helped me realise that although I may be at the start of this crazy journey I will get through it!!!!! So thank you all - hope u all keep well Vi x

[clh02]

Amazing attitude - exactly the same as me and my husband! Nothing has worked - awaiting Dr Provan to get to our consultant. But in the meantime my husband has been living with a count of 5 or less. Only thing he has stopped doing is play football. Apart from that he is out running, gym and we have just had a great holiday in Spain on the water slides and roller coasters. And if anyone is wondering - yes he flew (know all about the insides of a plane and how the cabin pressure works)

[toolski]

great to be able to help or talk to fellow itp'ers and there partners lifes hard enough without this bleedin condition,i'm off too new york and vegas in october and can't wait,looking forward to 14 days holiday with my bestus Kim,whats this Nplate??? has it any side effects? i ahd heard of some treatment that was supposedly becoming available in america a while back but havent heard anymore recently was supposed to enable your bone marrow to produce loads more platelets,i will try remember what it was called :S

[salmagal]

Hi great to see everybody is so positive I'm still on Nplate I'm into my 3rd week since last injection which I gave myself and my count was 404 last week still feeling good no signs of bruising or bleeding infact this is the best I've felt since being diagnosed with ITP so keeping fingers crossed for this weeks count had a great week in GREAT YARMOUTH now looking forward to booking holiday abroad for a few weeks in sun liked NickyD lottery match must try this thanks all

[sailor]

Hi Toolski. NPlate is now known as Romiplostin. It has received approval from NICE following a battle which the support group were involved in fighting. There is another new drug before NICE later this year called eltrombopag which works in a similar manner. Unfortunatly, both are very expensive as you could imagine. Like all drugs used for ITP, they work on some and not others as NickyD will testify.

Have a great holiday in the West, I am supposed to be going east for work c'est la vie.

[Hidden]

Drew Provan is also my doctor. I have got more sensitive to Nplate as time has gone on and have dropped to using a tiny amount every fortnight. I inject at home and go for blood tests every couple of months. No side effects either. It's a good way to live. Trials show that it works for 82% of people so well worth a try.

[toolski]

i have my next appointment in 2 or 3 weeks i will ask about this when i am there,dont wana be black n blue when i am poolside in vegas

[toolski]

Well,just back from the hospital been told my count is ten today so not the worst its been I. Will take that over zero any day,and the doctor reminded me that I have now had this condition for 5years did not think It was as long as that,anyway thats me until I go my holidays,hope you all have high happy platelet counts and may all your platelets do the work of ten

[lindylou45]

Hi so pleased to hear all the positive attitudes reagarding low counts etc. My daughter (she is 22) has been discharged from hospital recently and her count was 0, for the passed couple of months it hasn't come up passed 4. She has trialled Eltrombopag for the last 3 weeks but it didn't make any difference she is now on Romiplostin which we are hoping will help. Its hard though as a mother not to be concerened when she has such a low count and doctors talk about internal bleeds etc, although she is not a bleeder just has the purpura and the blood blisters in her mouth. I do try and not be over protective with her and want her to have a normal life. Will take on board all the positives stated here and try and be less overprotective as this is a really hard illness to deal with.

[toolski]

theres nothing wrong with wanting to look after your daughter lindylou i get blisters in my cheeks and tounge they can be realy annoying thats as bad as i get,i had a worry once when the sight in my eye went wonky i thought i had the dreaded bleeding in my eye,turned out to be some sort of syst on the back of my eye that made my sight in my eye go funny,it was just a random thing i think that went away on its own,,,i hope your daughter finds a way to deal with this horrible condition and i'm sure she will cope having her mum look out for her,i wish you's all the best and hope she finds a treatment that works for her...

William

[toolski]

can you tell us what this treatment is?

[doctor]

please do this;

* Be true and correct to the best of your knowledge and experience

* Be in the spirit of the site : to share, inform and support

but always do this:

* never loose hope and try to at least fight the condition

* accept your disease and do become cautious but never stop believing that there could be a permanent cure.

[toolski]

i am ok as i am thanks