imuran help?

[SIZE=”4″]Reread this. I’m sorry your going thru the side effects.
[url]http://www.gbs-cidp.org/forums/showthread.php?t=6299[/url] [/SIZE]

[SIZE=”4″]Reread this. I’m sorry your going thru the side effects.

[url]http://www.gbs-cidp.org/forums/showthread.php?t=6299[/url] [/SIZE]

Diane,

I was going to bite my tongue, But I thought better of it.

I understand the relationship you have with your GP. It is important. Without being rude, Does your GP know how to treat CIDP?

Imuran is an immunosupressant. There are different immunosuppressants, but without being on something, your immune system will just increase the size of the attack to meet the size of the attacker. Since your immune system thinks that myelin is that attacker and myelin is everywhere, you need some kind of immunosuppression.

There are different kinds, and different ways. Yes, Imuarn is hard on the body, the other one’s are as well.

Who are you going to trust to treat your CIDP, your neuro or your GP? Does your neuro send appointment notes to your GP? communication is absolutely key to make sure that your meds don’t conflict etc.

Good luck, I care.

Dick S

Diane – It sounds like you are starting to relapse. That means your body is attacking itself. You are only going to feel worse if the attack continues. Eventually you will go from feeling tired & having some pain to losing some mobility.

I’m not saying that to be mean. It’s what is happening because you have a chronic illness. It MUST be treated with some of kind of immunomodulator to keep it at bay.

If your GP wants you off of the Imuran what does he plan on treating you with instead? There has to be another plan in place! You cannot just go off of all treatments! By the way, I am a firm believer that a GP is not at all qualified to treat CIDP. You need a neuro or immunologist.

Call your GP AND your neuro first thing Monday morning. DEMAND that they speak with each other & come up with a treatment plan for you. They should discuss IVIG, plasmapheresis, steroids, etc. You need SOMETHING and quickly!

I’m not trying to scare you. It’s just that I care deeply about this. I have read so many posts just like yours over the years where dr’s who don’t know about CIDP just decide to stop treatment. Then the patient declines & with every relapse it just gets that much harder to get better. It’s senseless to me.

Please call your dr’s first thing in the morning.
Kelly