Who knows

I have GBS but wanted to give you a big [COLOR=”Purple”]Welcome![/COLOR][COLOR=”Black”]to the GBS/CIDP family 😀 [/COLOR] I was born and raised in the little town of Vulcan, about 100 klics south of you. It’s always a treat to welcome a fellow Canadian 😉

Do you know of any others with GBS/CIDP in your area? Do you have a group that gets together?

Again, [COLOR=”Purple”]Welcome.[/COLOR]

HI Wing,

Welcome to the forum. You pose a good question there.

My thoughts include the fact that I can say that, I have heard of some IVIG dependant patients that have been stable with ivig for more than twice the time you have been on it. It probably all depends on the individual. Some it may become less effective and others it may not.

I just hope that reseach does provide some breakthrough treatments that helps everyone and provides alternatives that work independantly. So far the IVIG seems to be the best thing going, although many have found sucess with combination treatments. I have come to realize that lifelong treatment will entail constant adjustments to the treatment plan if remissions don’t occur.–tim–

The one thing that is consistent is that everyone’s response to treatment is different. So, it stands to reason that not everyone has problems with IVIG losing its effectiveness.

Another thing to keep in mind when you are reading discussion boards and mailing lists on the net is that the posts are disproportionately taken up by people who are having more severe problems, bad reactions, or who have disease that is resistant to any kind of treatment at all. Those of us who have been treated successfully have less reason to post messages.

According to the clinic I visit in Vancouver, about 1/3 of their CIDP patients have had a successful, sustained remission on IVIG alone. Less than 10% appear to be truly difficult cases. In between, there are a lot of us who have had effective treatment on plasma exchange, steroids, immunosuppressants, or some combination of the three.

This is not to minimize the experiences of people who are having a lot of problems — those problems are real and significant, but just to let you know that there are a lot of cases that you are likely never going to hear about, partly because of early diagnosis and successful treatment.

Just for the record, I’m one of the people who had IVIG become less effective. That happened within the first year of being on it. Subsequently I was put on PE and cyclosporine, and now just cyclosporine by itself, and am back at work and grad school.

Hi Wing,
Thanks for posting. I can understand your fear when reading other peoples posts regarding treatment and relapse. I have come to learn that with this condition there is a level of unpredictability and such a varied range of possibilities that all I can do is understand my own body and it’s unique cycles of functioning. I also keep in mind that this is called CIDP because it is Chronic. Meaning it is an ongoing condition that is sometimes responsive to it’s treatment, and at other times is less so due to any number of contributing factors. I compare it to my other chronic conditon of Diabetes in that I can control it with insulin and diet but sometimes I will have high or low blood sugars because of hormonal changes or sickness or any other factor. The disease is always there and the treatment is usually predictably effective, but there are days when I can’t control it. It really keeps you living in the moment. Right now my CIDP is being controlled. I don’t know how long that will last so I don’t even think about the “What if’s”. I went for several years totally untreated and did quite well and then when it came to needing treatment, after much trial and error, I found a workable treatment so I stick with what works and live in the now. It’s really all anyone can do with or without a disease. It sounds like you found something that is currently working so stay there. I hope that doesn’t sound too flip. Good luck and stay well.
Linda

Welcome to the site, glad to have you.

If your treatment regimen works, stay there. If it loses its potency, it could mean that you are changing. Tell your Doc, and he can adjust the IVIG amount.

The big thing is, If it ain’t broke, don’t fix it.

Take care
Dick S

It’s a lot safer than lots of alternatives. Plus, you mite be able to have treatments at home which for me, has been a PLUS!
I’ve been on IVIG for over 4 years now, and the dose has gone up/down according to my weight [up/down] and bloodwork [up/down/sideways] While it mite not affect/effect some folks at all? For me, it’s been the difference between being able to walk with only a cane or needing a walker or something more complicated! I don’t know about anyone else, but that is a BIG difference for me.
I can say that my own personal experiences health-wise with other issues have put a LOT of stress on my already stressed system. So timing medical tests and procedures is something you should ask your neuro about and do things carefully. Examples: Blood tests-taken only a day or two before the next monthly infusion; Surgeries and biopsies [for me 4]- taken 10-14 days after last infusion…so you get the infusion benefit and not have it all ‘go’ to dealing with the ‘invasion’, yet still heal well. I had one ‘specialist’ insist on blood work less than 5 days after an infusion round – needless to say? It had to be re-done and things were not totally skewed as they had been rite after the first testing. I know I sort of vibrate in anticipation of my blood tests results….they can tell you a lot? But it sure takes a heap of work to try and understand it all!

As Dick so wisely said: Ain’t Broke? Don’t fix it!

Remember each of us is a unique being – we are all different in subtle ways, therefore we respond or not, well or not, to different treatments. IF you feel that the IVIG isn’t working as well as it should? Discuss this with your neuro and also IF you’ve gained or lost weight along the way? Gaining could mean you need more. Hope this helps!

Sorry it’s so late, but welcome to the family G. Thanks for sharing your success with IVIG. It’s encouraging to those of us who have recently been diagnosed.

Your photo and your “handle” made me think of Kenny G. Are you a smooth jazz fan?

Gary