An IVIg query.
AnonymousNovember 11, 2007 at 12:57 pm
I’ve been told recently about someone with a CIDP type neuropathy being treated with immunoglobulin several years after the onset, apparently with some improvement.
How soon or how well on in the neuropathy experience has IVIg been infused from your knowledge?:confused:
AnonymousNovember 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.
AnonymousNovember 12, 2007 at 11:55 am
Each person responds to IVIG differently. Some people will have an almost immediate improvement (within 24 hours!) and for others it can take weeks to see slight improvement.
I don’t know the data on giving IVIG to someone who is months or years into a disease but I would have to imagine that treating it, no matter when that treatment starts, has to be better than not treating it.
The way that IVIG is works is still basically a mystery. The thought is that the immune system starts to attack the IVIG anti-bodies instead of attacking the patients myelin or nerves. Once the attack is halted on the nerves then they can start to repair & grow back.
So I would assume that if a person receives IVIG, even after 10 years of onset of disease, that they may see some improvement if they can get the immune system to stop the attack.
Hope that helps.
AnonymousNovember 12, 2007 at 2:09 pm
IVIG’s were my primary treatments, but because I was being mis-diagnosed, I did not realize something chronic was wrong with me until I started holding onto the walls, counter-tops and anything to stay on my feet, seven to eight months past early on symptoms. The IVIG’s were not started until sixteen/seventeen months later because three neurologists told me I was hopeless. I don’t think that I will heal from the damage a year’s untreated progression did, but today I am no longer progressing or relapsing. The closest to a cure you can get. Was I hopeless!
AnonymousNovember 15, 2007 at 2:23 pm
My IVIG treatments started 18 months after onset (mostly because I was in denial and didn’t seek a diagnosis sooner). I was in really bad shape at the time — could barely function. I received infusions over 3 days in hospital and got immediate results — miraculous really. I had to be lifted out of the car when I arrived for treatment but got out on my own when I went home, and continued to see improvement for about a week after. I’ve been getting IVIG every 4-6 weeks since and have continued to gain strength. I’ve read that results are best if IVIG is started less than 2 years after onset, but that doesn’t rule out results after a longer amount of time.
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