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Hello there! My name is Aisling or ash for short and I am irish. I was first diagnosed with itp when i was 13 (count was 24) but it required no furthur treatment,and stayed away for 6 years then i got it back again when i was 20 (countof 9)and i was put on steroids which didnt work but the ivigs did.They catapulted them up to over 150,000 and they stayed there for a good long 6 years. Six years later at 26, in Feb of this year, they have plummeted back down to 16 and then within a day to 6. I was given ivigs which sent them back up straight away to 78, and then to 220 and i was fine....for THREE WEEKS. Started getting all the symptoms again and it was down at 33,so put me on those godforsaken steroids(which by the way is giving me SUCH anxiety)So was put on 50mg prednisolone but the counts fell to 18,000. told my doc i hated steroids and they were making me down and jittery but he refused to take me off them so i got a second opinion Went to itp specialists in london and they are tapering me off and actually my platelet is 19. So they are going to try me on something else new. My point is any way i have not been in work so long cos all i do is worry about my numbers and the steroids are making my heart beat so fast and i cant really function. I cannot live in london without any money and the stress of trying to keep my job and get better seem impossible. As i know no-one else who has this disorder i would love to speak to all of you people and get to know you. Any suggestions in what i can do regards work? and why all of a sudden ivigs dont work for me anymore. Please please send me a msg even to chat about anything as i am a very open minded person and will listen to your worries too !!!!!!!! look forward to hearing from you.

Hello Aisling, IVIG usually only works for three or four weeks at most so your long remission from it was very unusual. So really what you are experiencing this time around is just the norm.

I live in London too. Which hospital are you being seen at? I'm a bit confused about where your job is that you are not now working at. Is it back in Ireland? You could go back once you've got your second opinion and find a doctor there who will go along with what has been advised here. Or do you want to stay in London? It's expensive here but it's a great place to live and I love it.

Hi Ash - no real rhyme or reason as to why a treatment stops working. My theory is that the antibodies change and because of that, different treatments work at different times.

It's not easy to work on steroids, but many of us have done it. I just took one day at a time. I'd go to bed every single night thinking I could not do it one more day, but when that alarm went off, I rolled out of bed, took a deep breath and sucked it up. When you need money, you gotta do what you gotta do.

Good luck - I hope your counts respond and you can taper down soon!

Thank u both for your replies, ann I live and work in london for the past year. Usually when iv had itp its been due to a bad flu and, this time its lingering. I think.i do hav a virus though. Sorry my msg was really rushed today . I find that this time its not moved at all which I never had to deal with because I went straight to remission. Currently, im on steroids plus an antibiotic. Iv started at london and the barts as I read online there was an itp specialst there so I thoughy it best to seek him out. Its great to live in lindon yes the expense is crazy I just guess im anxious cos iv to kearn to cope with tryin to not worry about cos im not sur what the count is. That drives me mad.
What hosp u at ann????

Sandi thanks for ur advise, im glad I found this forum as I guess its great to speak to people,who can empathise. Its hard when I speak to friends like they are great,and look out for me but they dont understand it.
My treatment on steroids is not working it lowered so I hav to be tapered and they are going to see what my bloods ate in a week. As for work I just want to be full of energy again. thsnks u guys and,msg me any time. I like to hear other peoples stories x ps ignore allll my spelling mistakesits actually the phone im using

I go to the Royal London too, and see Drew Provan. Actually I don't see him very much as I just go to the Haematology Day Unit for blood tests mostly. I'm now more stable on Nplate but when going through the ups and downs and steroids and all the rest I just carried on working. I did find it very tiring but just kind of did it. I'm now pretty well back to normal most of the time energy wise, so hang in there because it does get better.

Thank u im so tired being on steroids. Im going to see drew provan so I think they are,looking at other treatments. sreroids do not suit me my platelets are still low but hopefully ill see what they say

I can definitely understand your difficulty with steroids and work. I've been on steroids for about seven months now, even though we've already determined that the steroids are not working for me -- Ritxuan is what worked for me. Steroids have resulted in a myriad of unfavorable side effects, and there were definitely times when I found it challenging to do anything put lay in bed all day and sleep.

But, I'm with Sandi, sometimes you have to just do it. Not only did I have to keep working in order to maintain my medical insurance, but I had to keep working to fund my life -- pay my rent, buy my groceries, etc. I didn't have a choice. But, I have a very understanding boss who definitely cut me some slack. There were days where I was not the most productive, but on the days that I felt better, I would always do my best to work twice as hard to make up for those not-as-productive days.

I agree, some times i feel better on some days then others, but i guess i am not used to having consistently low platelets. The anxiety is a lot to get used to wondering what my counts are and it is taking a bit of time to not get anxious and i just guess that is my main problem. I am now on a dfferent medication to steroids and i feel less crazy on it the steroids were a nightmare to be honest. Thanks for all your opinions.