gilenya

[cainer]

not really a question- my white blood cells have really went down- this was like my 4th month- but its gotten to low- he said i was the one percent that it could- do this too- just if anyone is on this them blood test are important!!- cant say yet it is the gilenya- will post more when they start coming up- guess it can be a number of things- just want ya to be aware-

[Sarahsmom46]

Did the neuro say whether you'll be able to try the drug again at some point?  I know if the lymphocytes go below 200, then my neuro said he'll take me off for a month or two until the numbers come back up and we can try it again.  200 seems to be the magic number.  

[cainer]

so yours are low too??  he took me off it was afraid it was this pill- but, i will sure let you all no -the feeling ok- ya just cant say cause all side effects- lol- we have them anyway?  its a catch 22!!   i want it to work so bad- and havent gave up yet!!  hugs

[Sarahsmom46]

Did you get a copy of your lab report?  I highly recommend that you have it so you can keep an eye on what is "normal" for you.  

Did he tell you how low it is?  The drug primarily affects the lymphocytes as far as its been explained to me.  Mine are super low, but white count is low normal.  My neuro said that as long as the neutrophils are in the normal range that we should be ok.  

Are feeling fine otherwise?  Seems like you'll probably be getting more blood work than normal to make you this stays under control.

Let us know how things are going.  

Julie X