Hi Linda,
Maybe the methotrexate is the problem, maybe your neurologist should take you off it after so many years. Sometimes we as patients need to rattle the cages of these specialists as they can become complacent and take their eye off the ball. Be Well, Bruce.
Thank you Bruce. I've been playing with this idea for some time, but the problem is I am only responsive to methotrexate so far however I just saw my neuro and he brought up the idea of possibly trying IVIG injections. I just don't want to lose what I've gained. It's hard to know. Thanks for your concern. All good wishes.
Linda
I am finally going to a neurologist next month. I have my Nerve Stimulation study that shows axonal and longitudinal losses and dx was CIDP. I am going to ask for IVIG treatments. I was wondering what the side effects are. If anyone can help, I would appreciate it.
Thanks, Melissa
Different people - different side effects. BUT - unlike most other treatments they are most often just short term so you do not get those nasty problems that steroids (etc) are known to cause. IVIg is long term safe!
Some nausea and headaches are most commonly reported. Some people take stuff to minimise that but depends on how you feel about taking drugs where you can tough it out for a few hours for the same result. Many people like to do a lot of fluids before - but personally - when I am in that chair I don't like the idea of going for a wander (if you get my meaning...) so where I go they supply fluids (coffee, tea) during IVIg. I think that helps.
When you find out which product you will get, find their website and read the detail. That should tell you absolutely everything you need to know about side effects.
Thank you Michael! You have given me a lot of good things to keep in mind when doing the IVIG. I'm not particularly fond of long term Prednisone use. I have seen skinny people balloon from this med. I am already wheelchair bound when leaving the house and on the couch when at home. No need to gain any weight here.....thanks again
Melissa
Michael C Stark said:
Different people - different side effects. BUT - unlike most other treatments they are most often just short term so you do not get those nasty problems that steroids (etc) are known to cause. IVIg is long term safe!
Some nausea and headaches are most commonly reported. Some people take stuff to minimise that but depends on how you feel about taking drugs where you can tough it out for a few hours for the same result. Many people like to do a lot of fluids before - but personally - when I am in that chair I don't like the idea of going for a wander (if you get my meaning...) so where I go they supply fluids (coffee, tea) during IVIg. I think that helps.
When you find out which product you will get, find their website and read the detail. That should tell you absolutely everything you need to know about side effects.