Reply To: Droopy Face!

April 17, 2012 at 8:32 pm

Thanks again so much for your help!!!! It is so great having someone to relate to, especially since it seems we have so many similar symptoms!!! I just heard back from my dr and they want to increase my 48g IVIG every 2 weeks… I know that I have needed to increase the frequency for a while, but just kept thinking maybe we could get it under control with every 3 weeks, as finding the time every 2 is going to be hard.. but I know I need to (as I type this my hand is burning on fire with numbness – it is sooo wierd- when I bend joints, use them, they are exposed to heat, or rubbed by clothes the numbness and burning sensations go through the roof!?) So hopefully that will do the trick!!!

May I ask what your side effects were from the cellcept? Do you have any from the Imuran? You know, I’m not that familiar with plaquenil, so I didn’t even know there could be sun sensitivity with it!? I have been pasty white for about 5 years due to being busy/pregnant etc.. so was going to go on a three day mini vaca with the kiddos and soak up the sun (since I haven’t in ages), I’m glad you said something – I used to not burn much (though as white as I am now I”m sure I would), but I might have turned myself into a crisp! Does it make you burn more easily? or cause a rash? Thanks again!! You have helped ease my stress in many ways, especially kowning that Imuran hasn’t caused you to get sick more at work- I have worried about what I was going to do with my career if it came to that!