Seems like I skip a day of checking in and all of a sudden our famliy has grown! Welcome, and to you Bubbleboy also!

Sheila,
I’ve been doing Cellcept 1000mg twice daily for a couple of years now, it’s the same type of drug as immuran as it suppresses the immune system. So far all of my blood work has come back fine. I try and avoid sick people plus take a b-complex to help from catching colds, flu, etc. I’m still having to do the IVIg every 6 weeks but have been able to tell a difference with taking the cellcept as opposed to doing the IVIg alone. I haven’t had any of the nasty side effect so far and I make sure to do the blood work so if any problems do come up we know right away. Hope that helps alittle.
Pattie

Monica,
Welcome! I know it’s hard not to be able to do all the things you want to. I’ve learned to redirect what energy I have to what I can do. New hobbies like reading and gardening. I’ve also learned if I need help with something I ask for it. It’s a big change but focus on the friends who have stuck by you and the things in life you can do. The greatest thing I’ve found is this site for it helps to know you’re not alone and to have someone who can offer in-put to the questions you have. It’s a rocky road but we’re all in this together. Keep asking question and don’t hesitate to take anything you’ve learned from this site to your doctor. Alot of the doctors don’t know excactly what they are dealing with so being informed yourself helps. Good luck and keep your chin up!

I take Cellcept 1000mg twice daily along with the IVIg every 6 weeks. You might ask if there is something like that to take. My neuro said it’s a matter of trying different combos because there doesn’t seem to be a set of rules on what will work, as with the Lewis-Sumners steriods don’t seem to work. I’ve done my share so I know that’s true

Steriods don’t seem to work as well for me but my neuro has combined cellcept **1000 mg 2times daily} along with the IVIg {every 6 weeks} and this seems to make a difference. Good luck in your search for a doc, a good one who listens makes all the difference in the world!

So glad to here all getting better on your end. The two of you with your attitude ,humor and strength are an inspiration to the rest of us. Carol, be sure to take care of yourself too.

I’ve been using the Cellcept for over a year now at first with the solumderol IV treatments and now with the IVIg. I do 1000mg twice a day because the other treatments alone wern’t working. It has seemed to make quite a difference. I was concerned about all the side effects but after all this time and lots of blood being drawn, my liver, kidneys, etc. have had no damage. I was a little more likely to catch a cold or any other bug going around for awhile there but with taking vitamins that problem isn’t as bad. My only complaint is the fasting that goes with each dose, I’m a nibbler so doing without food is horrid, lol. I really can’t think of any real problems I’ve had, just be sure they do your labs regularly so if a problem does arise they can catch it. At first I was going in often but now only have to give up the blood every three months.

On the AFOs, I hated the plastic ones they started me on but last summer I was fitted with ToeOFF, a much lighter weight, less cumbersome brace for the foot drop. It’s easier to find shoes that fit and I can be on my feet alot longer. You might want to look into those and see if they’d work for you.