That is a super question?

November 11, 2007 at 8:37 pm

I have asked it of that mag IG living recently because here in the US IVIG is still considered, tho approved, by most insurance -payors- companies as an ‘off-label use…and as such for over 25 years- the questions is why NOT? an approved on-label use…not like there is no data out there…
My above comments seem off topic but they are not… I for one did not start IG therapy until 15 months after onset…Had [B]I[B][/B][/B] not persisted and bothered docs then more docs I would not have gotten diagnosed, then treated.
As for therapy response? Key in some cases such as GBS treatment response is critical. Usually tho it does not happen, because the treating docs simply do not KNOW about it or the short/long term implications. Keep in mind also that immune testing results take about 6-8 weeks too. Then there are the strictures to administering such an expensive therapy at what could be potentially crucial at some points in time. Once the windows of ‘opportunity’ are missed…well, damage is done-holding pattern ‘maintenance’ is the mode du jour. And then, hopefully subsequent patching.
Response has a lot of variables from all I have read…How long/and damages from onset. Lifestyles…medications used, supportive therapies such as PT, nutritions and family suport systems…as one’s emotional well being – much as we hate to admit it, is a key force in coping with it all.
Strategic numbers tho? Success is as subjective as the descriptives of the pains we feel, and, the degrees. My take on the viable research reports seems to say that there is either a 40% or 60% postitive response rate to IG therapy…from there the numbers tho get even mushier…Mainly because it appears that many or most reports extrapolate results from bunches of tests/trials done 10-20 years ago..thus a re-hash. From most I have read everywhere those who do not continue IG therapy do not do so for the following reasons: 1-access to getting the therapy – some regions have ‘shortages’ or their insurances do not cover enough of the expenses to make it viable ; 2- allergic reactions…many folks have the minor to major reactions right off the start…and knowing what those reactions are…Had I not known what to expect and had good experiences [even with minor reactions]AND had a really bad reaction [likely thru mis-matching IG product to patient or inadequate preliminary testing for compatability] I would probably have been put off as well, 3- expense.. a no brainer? and last 4-physician BIAS against therapy for whatever reasons.
I reacted well right off the first day. I know of many others who have not, though. The ambiguous ‘flu-like’ symptoms are really all-encompassing and do encompass? I do not recall any specific research or notations of instances when the times from onset to therapy was an issue? It seems to be one of IT either WORKS or NOT.
I hope this helps…I fear it does not. It is a concern, as I gather that the sooner one receives IG treatment the better the ‘odds’ for a more progressive recovery. Going backwards tho I am guessing that key to it all is the DIAGNOSIS…thus treatment…then tracking? I sense that here in the US tracking systems of the IG PRODUCT are great, until the dispensory point then it falls apart. Tracking who gets it and for WHAT and what it does…good or bad? Nothing is being done this way really. All I can say is I sure wish I’d had a doc familiar with GBS/CIDP when I’d my onset in an ER! I lost lots of time and treatment time trying to get a doc to really realize something was wrong with me…e.g. not in my head. Ask me more questions or for resources if I can find them…I will. I know all those frustrations, as I believe all here experience.