I thought it would be interesting to upload this graph, it shows my platelets tracked in ITP tracker app for the iPhone.
The first two high peaks are IVIG, in between them I had Rituximab.
The last part is Revolade and it goes up and down a bit depending on how much Prednisolone I have. The next stage is to get rid of prednisolone and take a bit higher dose of Revolade. I started with 100g prednisolone at the second point, where it goes up from 3 to about 7. Currently down to 2.5grams.
Hi how much Revolade are you on at mo?. im now down to 10/5mgs alternative days of prednisone and my platelets are 128. I'm back at the hospital on Monday so hoping my platelets are holding up to the reduction as we have booked flights to cyprus to see our son, my consultant said he would try the Revolade if platelets drop as I need to be off the steriods. Im still getting the lightheadedness and as the result of that I'm having to stay on the sick. Do you get any side affects from the Revolade?? I hope your off the steriods soon too
Lin
I am currently on 50mg Revolade increasing to 75mg soon. I haven't noticed any side effects yet...
Your platelets are pretty high even with a low dose of steroids so if they do drop I guess a low dose of Revolade would probably bring them up.
My immune system just seems to be invincible and the more platelets I make the more it eats up!
Bless you, fingers crossed it all settles in your favour. Thank you for your reply, it's nice to know there is something out there other than steroids.
Iv come down from 80mg since July, platelets were 7 they did go up to 142 then dropped a little to 114. So Iv been very lucky other than having a dizzy head n going sick and Work has been very good so far,
Good luck
Lin
This is so interesting, thank you! What is the app called?
It's called ITP Tracker.
How did Rituxin work for you? They wanted to do it but I'm super nervous. My counts go up with IVIG but as soon as it's out of my system I drop to the teens and recently single digits and was back in the hospital. I have been on steroids too.
Hi I had no side effects, but also no effect from Rituximab. Revolade only works while you take it, a bit like IVIG, it wears of real quick!
Do you get real bad bleeding with low counts? I was only in hospital the first time I was low, then they sent me home with a count of 7.
This was my second time in the hospital in the last couple of months. First time was with a count of 2. And they won't discharge you unless you are at about 20. (Where I'm at) second time I was having a bad bloody nose for about 2 hours and passed out and 911 had to be called. Only 5 days before I was at 59 from an infusion of IVIG I had earlier the previous week.
That simple, I should have googled it! ^^ Thanks!
Downloading the app! Thanks so much.
Hi have you used the itp tracker on the iPad? I've just tried it but will only will show a calander and nothing else??
Lin
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Can the platelets count still increase or there is no chance?
