Hi Hope everyone is doing ok. I haven’t been on here for a while but now have a question.
Ive had 7 Tysabri infusions and feeling much better for being on it. However, I could not have my last infusion as the blood tests had shown my White Blood cells and Lympho??? to be raised and my liver enlarged.
The hospital has asked my GP to arrange a Hematolodists (prob spelt wrong) appointment and I was told my consultant would ring me.
My question is has anyone else had this happen to them? What was the outcome - I realise my situation could be completely different to others, but hoped to hear how others have gone on?
Don’t know if this will help - I had one infusion deferred for a week due to an infection. They told me they will not due the infusion if you have an infection as Tysabri suppresses your immune system and they do not want to give Tysabri at a time your immune system is meant to be fighting an infection or indeed is already engaged in doing so. I was still wobbly just before my last infusion so the consultant ordered a blood test to see what my white cell count was like. I beleive a very low count was suggest my immune system is well below par or a very high count would indicate an infection still present.IF your white cell count was high that would be indicative of infection present somewhere and hence it would not be safe to knock your immune system with a slug of Tysabri. Not sure about the liver though I know that this is one of the things they check (ie liver function) whilst you are on it. Hope you get this sorted.
How high is high mine white count goes up and down from 7 to 15.3 etc and has been doing this for years.
If you had steroids in the past few months this will make your white count high. I was also told a type 1 diabetic with bad sugar control will affect and make your white count high.
I was told a bad figure for white count would be in the hundreds.
I never had a liver issue though but once you see a hematologist they should ask what drugs you have had including any steroids.
Oh I was on Tysabri had 4 bags before I kinda crashed and they realized I developed antibodies to tysabri still I felt great on it even though my immune didn’t like it.
Ha thanks… well I think they stopped it because of your liver issue not having a tiny elevated white count my haematologist said
‘telling you its high was the wrong word, high is in the hundreds’ also with a serious infection someting else goes up within your
blood and not just your white cells but I forget what that was. (my someting else was always normal)
My white count was up when I started Tysabri and during and when it ended 5 months later.
I have had many NHS places test my blood as well as GSK doing lots of things and with results only thing they found was white count at 15 or 14 .