Forum

:(

Hi. Following on from my post the other day I called the doc yesterday and they told me to ring back today if I was no better or worse. So I had to call back today they made me go in and it turns out it’s tonsillitis. Well, I don’t normally need to have time off for that, but I can’t even sit up at the min, just feeling very sorry for myself. The doc has also said that she thinks my White blood cell count is probably low because of being run down with this, mouth ulcers, hideous skin and weird bruising that lasts for four weeks+. She said that if it is low White cell then I’ll have to come off rebif. I wondered if anyone else had experienced this? I feel like I’m constantly taking one step forward and two back with this horrid condition. Thanks guys, Suz xx

((((hugs))))

I just discovered that even a low grade cold can be totally debilatating with the MS, I can't even stand up long enough to toast a crumpetletdown

stagger stagger, cough cough, pee peesick

Clarexxx

Sorry you are struggling.  I don't know at all what the rules are on white blood cell count, and what your levels are, but my experience on Avonex is that my levels drifted down a bit below normal range from time to time - both total count and neutrophils in particular - and it was not taken as a signal to come off the drug, just to have follow up tests and check they drifted back into range, which they alwyas did - this happened on a number of occasions.  So don't despair - low count is not necessarily a show-stopper (although obviously yor particular circumstances might be different from mine.)  I'm sure there is very specific guidance about whaat is OK on Rebif and what is not and I'm sure they'll do what's best for you - I hope this does not mean a change of medication.

Anyway, I hope you feel better soon and that this all settles down for you.

Alison

[quote=“Cbear”]

((((hugs))))

I just discovered that even a low grade cold can be totally debilatating with the MS, I can’t even stand up long enough to toast a crumpet

stagger stagger, cough cough, pee pee

Clarexxx

[/quote] Hi Clare, isn’t it awful being so sicky?! Green face indeed :slight_smile: Suz xx

[quote=“alison100”]

Sorry you are struggling. I don’t know at all what the rules are on white blood cell count, and what your levels are, but my experience on Avonex is that my levels drifted down a bit below normal range from time to time - both total count and neutrophils in particular - and it was not taken as a signal to come off the drug, just to have follow up tests and check they drifted back into range, which they alwyas did - this happened on a number of occasions. So don’t despair - low count is not necessarily a show-stopper (although obviously yor particular circumstances might be different from mine.) I’m sure there is very specific guidance about whaat is OK on Rebif and what is not and I’m sure they’ll do what’s best for you - I hope this does not mean a change of medication.

Anyway, I hope you feel better soon and that this all settles down for you.

Alison

x

[/quote] Thanks Alison. Your post has made me feel better. I know you’re right and the medical profession will do what’s best. I think it was just worrying me that I might have to come off of something that’s meant to help. Suz xx