IVIG or Immunosuppressives?


My son is aged 11 and was diagnosed with CIDP in May 2013. His presents as severe weakness in his hands and arms and to a lesser extent in his legs. He has been treated so far with IVIG. He has 85 mg over 3 days and within a week he is back to full strength and this lasts for two months and then his symptoms return. Of course each time we hope his symptoms don't come back but so far they have exactly 2 months later!! Our doctors have said next time we will have to consider immunosuppressive therapy such as Azathioprine. Has anyone used this? I've been told that it can cause all sorts of other problems. What concerns me is that he will then be at risk of catching anything as he'll have no immunity. He was put on steroids (prednisolone) when he was first diagnosed but these really altered his personality and only slightly improved the condition. Would immunosuppressives have a similar effect? At least with the IVIG we know it works for him if only for a limited time and we feel we have some sort of control of this horrible illness. Sorry to rant on a bit but so much to say and so many questions to ask!!

Hi Mom. I'm very sorry to read of you and your son's situation. He's the youngest case I've seen in 13 years of dealing with this disease/syndrome. Considering what I've seen in others and have been through, it seems every patient is unique in their cellular dynamics, therefore the path toward wellness must be personalized. Doctors of a "cookie cutter" mentality will disappoint us.

If I may, my experience has been one without cure or permanent recession, but, I am quite well with 13(and going) years of IvIg. I became ill at 31 and was considered young then. It brings one to wonder about our evolution as these things pop up where and when they do,no?

You both will have to study,study and study. First study "The Art of War". Lesson one is to know yourself, the second is to know your enemy.

As you teach yourself, try to understand and have patience with the way we humans actually gather and share information. The world is full of all sorts of people... Our doctors, "healers", well, they are human too.

IvIg has been the best of what there is to do for me. Steroids have side-effects that are bad that can reach beyond abandoning use. Again, you'll have to understand these things for yourself. Seek information that have a few point of corroboration. It's not that people are liars; we see and say things differently than things can actually be.

To own this situation, you must fully engage it and "walk the walk"; not be carried through. I know...it's scary. And why human beings created this site, right? You are not alone...but you will have to tread the path before you, as will your little-man.

On IvIg; it is not for everyone and does have it's bad moments.

BEWARE. This is a human-donor product and can come with human-donor issues. We have become very good at recognizing and eliminating blood borne issues; but the "issues" seem to have a will to live too. Keep your eyes wide open and donate blood...

I have a pretty full life and am well. Since starting IvIg, I've caught whatever seasonal yuck 'everyone' gets once and that was more due to a major family crisis and it's stress than treatment or CIDP. Being sad makes us sick... I've noticed over the years, mosquitoes don't like me so much anymore too. The muscle endurance I gain between treatments does maintain, tho my reflexes do tell me when it's time for treatment. From my experience, I can't see any reason your son won't be able to be whatever man he strives to be regardless of this illness... however, this is just from my seat in the infusion clinic.

My "quarterback"& treatments are in a huge university where lots of major discoveries are being made and tried out. I am bombarded with all sorts of "options", yet, my doctor, with all he sees and understands maintains "the oath", 'first do no harm'. If something is working to keep us able and fit, then why change from it? Also, there is something valid to be said about the power of trust and belief. Our doctors need our confidence in them as much as we their's in themselves to make the magic work. It is a co-operation on many levels. I know that sounds all metaphysical and voodooish, but studies show that there is something to that "faith" stuff.

I notice when we first get handed something we don't want but must keep, we wrangle with it in all sorts of ways. One of the ways is to keep adjusting the way we deal with it, because this is not really dealing with it or owning it. It is still just the first phase of getting to there; which in our goofy human minds is pretty close to not being there. lol... Yes, there were days(and still are) when I think being a goldfish would be better. Having to pull-over from my life's momentum for a few days every 4 weeks can bum me out. I suffer my own pre-existing bad attitude issues aside from this anyway, so please don't take my bad days as ones y'all should have to have. I can be the hugest baby sometimes. Yeah, I'm a drama-queen...which does never help, so... but I'd forgive you if you ever were, compare scars and laugh it off with you anytime.

One thing I've found is that just before and during treatments, funky salts, like those found in Doritos, cup-o-noodles and all that stuff makes way for IvIg side-effects. These are headaches, limb pain, chest tightness and pain. Recovering from the fatigue I get from all the foreigners on board and extra fluid is increased in feel and duration.

I'm female. IvIg just before mensy time to be a little uncomfortable also. Men swear they don't have such things but, consider watching for neap and ebb tides in your son and try to have treatment during low-tide. It doesn't really matter overall, as I can see, but a more comfortable treatment experience is key.

11...gee, that's young... Now, what I'm about to say may be mean to those suffering in such a way but, tho what we have is a major bummer; it is not as complicated(from my seat in the infusion clinic) as some of the other chronic diseases we've been suffering for the last 100 years, like diabetes. We at least may have cake... This I can do with or without limbs. I have no shame when it comes to dessert or carbs in-general.

Do be wise to what infusion is all about and teach your son how to be the best he can be to his body and self as he gets it. Those who have found a point of stability must not discount it simply because we don't want to have to have the treatments or disease.

Best to you and your son...and sympathy as well as empathy...with lots of optimism. This can be less than hell, honest.

Please feel free to e-mail me direct for more details on my oncologist and treatment/self-care stratagies. I'm happy to share! T.