Ivig differentials

[kaylish]

For those who have had Ivig therapy did you get a different response to treatment every time?? I have had 4 treatments now. Two very good and two not so good :( The two good responses occurred after the two highest doses.Great to see you all back :)

[powder pig russ]

Kaylish
Everyone responds differently to IVIG. That you get a better reponse from a higher dose is not surprising.
Russ

[dahlek]

While I don't have MMN, I do have CIDP/PN and get infusions monthly. How you react can depend on the dose you get, the brand infused into you, your pre meds, and how fast the infusion rate is done.

A few months ago I changed to home infusion from a hospital upon finding out that I'd had four different brands of IVIG administered to me in a 6 month period. The stuff is not interchangable! If you are infused at a hospital, be sure to take a note pad and record EVERYTHING, the brand lablel noted on the bag, what pre-meds are taken and the various rates of infusion.

There have been times when I'm not sure that 'this time it will "take"', I now know why [the brand switches and the rates]. Since starting home infusion, I've had FAR fewer s/e's and much less stress about the whole thing.

I am truly hoping you improve! - j

[twisty]

I have never received different dosages before. In australia here we have lots of different brands (most of them imports) and you only get the dosage it says! I have 2 different brands, our australian red cross supplied Intragam and SandoGlobulin. SandoGlobulin is basically the old one that they pull out when intragam is in short supply. It gave me aseptic meningitis. But i have never had a problem with intragam.
I have noticed though that different infusions can take different amounts of time to "kick in" and for some infusions the effects dont seem to last quite as long.
Neurologist says its basically luck of the draw because you get somewhere in the vicinity of 50 to 100 different donors stuff in each bottle. Not one treatment is the same.

[dahlek]

BUT there is a magazine you can subscribe to [it's free in the US] called IG Living...just web up that name and you will get there.
I have found that tho it's a manufacturer and distributor sponsored site, that the staff are some of the most responsive I've met interms of IVIG'ers questions, concerns and need.

Further it's my understanding that it is claimed by mfr's that anywhere from 500 to 5000 individual donors comprise contributions to any given batch. Complicating things more is the plethora of misunderstanding about the testing, processing, distribution and the gamut of varied approved and off-label uses for the product. Manufacturers and support groups representing many of us are not communicating well to either the public or to us. To me, it borders on very sad to pathetic that the values of this product to we recipients is not widely proclaimed. Thus is life?

I will state, have done it often, and at times stridently, that ALL brands are not the same! I'd an experience last year when the head pharmacist of a HOSPITAL [mind you] flat-out stated IVIG WAS absolutely NOT a blood product! Scary? You bet! I'm no longer infused there-I'm infused at home. Can't imagine why.

Before I started on the IVIG, I spent hours, or days looking up everything that could be found on the web to assure myself that the precautions and risks could be viable in my treatment. The most convincing advocates are folks w/MMN. Comparing that, and ALL the pros and cons I went for it. I AM SO DOUBLE-DAWG DURNED glad I did!

I don't know about Aus., but the US has a FDA..if you go there you can see that there are heaps of regs and rules and paperwork entailed in ensuring product safety. One key is that: should a substitute of prescribed brand be used, the pharmacy has to notify the prescribing DOC in writing. In turn the DOC has to notify you. It's tech reading but enlightening for sure. I'm sure Aus. has a counterpart to the USDA.

I had a site to refer you to about the procedures infusion nurses must take before, during and after the whole process, but, durned if I can find it NOW!
Will check it out and put it here as a potential sticky...My thoughts are IF you know what THEY should be looking for in the doing and reactions, well, hoping ever so much not, IF, you can beat problems before they happen.

Lots of good thoughts to all - j

Hang in there

[kaylish]

Thankyou for your replies.I understand the doses of IVIg maybe reduced due to toxicity build up. Is this correct? Under normal circumstances I have a treatment every 4 months for two days. The last treament has lasted only 3 months. It was a reduced dose and I didn't get the same impact as previous ones. My Neurologist is going to look at me sideways as he has never had much faith in my IVIG. It has been a battle to gain his confidence as he is such a skeptic. I have developed numbness and pins and needles in my hands, but only at night time whilst sleeping. Does any one else have this symptom??This is such a great site and I am so pleased it is up and running again.

[kaylish]

Hi Twisty. I also have Intragram P.It seems that my Neurologist expects a perfect result every time and if I don't get that then he becomes very skeptical about IVIG. What I have tried to ascertain is that each treatment could be different due to different donors and overall health at the time. It seems that due to these factors, one can expect a different result each time. Last time my Neuro decided to 'round' the dose off leaving me short of 6 grams. He told me that 6 grams would not make a difference, but my treatment has not lasted the full 4 months and has not been as good as others with the higher doses.

[twisty]

Dahlek: IVIG NOT a blood product?? From a HOSPITAL??? That is scary!! In australia here i know they have VERY strict rules and regulations and yes i was told about EVERY possible side effect you can have before given EVERY treatment (i get sick of hearing it..basically everything they give you in a hospital can cause death). We do have other brands available but the Intragam P seems to be the best one out (its always in short supply, everyone wants some!). Like they say every single treatment weather it be high dose, low dose, this-a-gam or that-a-gam, is a gamble.

They've told me to monitor myself closely for at least the rest of the day after every treatment so i can get back quick if something doesnt feel right.

The Aseptic meningitis (exuse the spelling) happened on my very first round of treatment. It wasnt pleasant but it did give me the oppurtunity to feel what it feels like coming on, so if i feel like that again its off to hospital quick.

I usually find the intragam now is fine. Ocassional headache but nothing a few panadol wont fix.

I spose the message here is dont get down if you have a bad experience or even a few bad experiences.

It sounds to me after reading some threads you guys in the US have a **** of a time getting disability and affording treatments etc??

To kaylish: Nice to hear from someone on the same poison! Ive found alot of neurologists to be...neurotic! You cant expect perfect or even the same results from any 2 treatments. Neurologist should know this. My neurologist also said climate plays a big role. Im in queensland and in the summer months the heat and humidity make me feel really tired REALLY quick. But in winter im buzzing along with heaps of energy and effects of treatments seem to last longer. as for rounding down 6 grams..thats a fair bit. Intragams given on weight and im a pretty solid guy. I get 33 grams. so 6 grams would be more than 1/6 of my dose! Enough to notice a difference i bet. I cant believe they would round down 6 grams also because intragam comes in tiny little 3 gram bottles! ( i get 2 x 12g bottles and 3x3g bottles = 33grams). Sounds to me like they just want to save money. I know in Australia where its covered by public system it costs the government $97,000 a kilo. thats $3201 AUS for my one treatment a month. I'm lucky my current neurologist happns to be the head of neurology at the royal brisbane hospital AND a researcher and expert in neuropathies. They actually took some of my blood to help in the research. And she is adament that i get EXACTLY 33grams.

Anyway enough of my babble.
I know everyones told their stories before but i alwasy like hearing them if anyone wants to share.

[twisty]

One more thing for kaylish....
I would seriously consider finding a new neurologist.
Dont know what the public systems like in NZ but your best bet is to find the biggest hospital around and annoy them until you get in.

[kaylish]

Comprehensive reply Twisty...thanks for that.I did wonder at the time whether my neuro would reduce the dose due to money.However I realise now I have lost a little weight since the last treatment and this maybe is why he reduced the dose. Having said that my weight loss would be minimal. Treatments began a year ago at 135 grams for the first 5 day dose. I have no recollection of the second dose but the 3rd was 126 grams and the most recent 120 grams. To me there is a vast difference between the first and the last...15 grams ??? I will be having an appointment to see my Neuro very soon and it will be interesting to hear his response. He seems to have been so disbelieving of the results that initially he wanted to do a placebo then realised it would be too difficult to put together.I say "listen to the patient".
Love to you all.

[Mick05]

I started IV's in Oct.05, the responce was pretty equal until April when the Doc. at U.C.L.A. felt the dose was to high and had my local Neuro reduce it to half. "Disaster" I lost a lot of strenght before I was able to get another treatment. Also tried a half a dose every two weeks, that didn't work either. Obviously, mine is more aggressive. Also, since then, the effects of the IVIg effectiveness does not seem to be equal duration between between treatments. ? no changes in IVIg brand. Every time the effects wear off prior to the next IVIg, I seem to not get totally back to where I was before, frustrating. I am currently on a 21 day schedule of four days IVIg at 160 grams. Like what has been stated, every body responds differently and the that most of the Docs haven't seen that many cases of MMN, They want the treatments to be nice and tiddy fitting a schedule and total recovery with each IVIg. So, I don't find that to be the case. One shoe doesn't fit all!

[dahlek]

the brand of IVIG you are being given! [While I don't have MMN, I've CIDP/PN]
I almost threw in the towell until I found out that I'd been given four different brands over a 6 month period. ALL IVIG brands are NOT equal! I felt like a 'lottery ball' with good reactions and bad in that process.

Be concise, clear and absolute in communicating to your neuro what is working or not! Also, be a niggling nag if you aren't getting blood draws for testing on a regular basis [usually 3 months]. Blood should be taken rite before an infusion or #'s can be skewed big-time. Docs like to 'twiggle' the doses to see how little you can get by on [costs, availability, etc are factors there].

Hang in there and good thoughts to all! - j

Twisty -Yep, I was told by the HEAD pharmacist of a big area hospital that IVIG wasn't a blood product. Needless to say, I've changed where I'm getting infusions. I'm not worrying about what IVIG I'm getting and can sleep at night without THAT sort of adventure!