AnonymousMay 26, 2008 at 1:21 am
I found this on an old post. You can use the search capabilitly on the tool bar at the top to check past posts for IVIg. I hope this helps.
“[FONT=”Arial Narrow”][FONT=”Comic Sans MS”][COLOR=”Blue”]Hi again Swan Suite,
It sounds like you are just on pain meds. Have you been confirmed with a dx of cidp? If so, the usual protocol is to start ivig over a 5 day course and continue maint. doses to allow the demylienation to stop and healing to start. Check out a post on if ivig does not seem like it is working or something like that, I think deem or deenop started it and I just replied. Just some thoughts I had on the topic of ivig.
Ther are others on the site with your acronyms igmus or what ever they are, I always have a problem differentiating them!!! Try entering the acronyms under the search engine at the top and it will list all threads about it.
Dawn Kevies mom”[/COLOR][/FONT][/FONT]
AnonymousMay 26, 2008 at 9:17 am
Hi Beth, Welcome to The Family. The number of doses depends on the patient and dr, if after a few ivigs and there aren’t any improvements than it might be a good thing to try plasma exchange (pp). Sometimes pp will give results when ivig didn’t. It takes out the antibodies and in turn reduces the amount in the system doing the damage to the myelin. Ivig works about 70% of the time and pp works about 70% of the time, and sometimes there are drs who use both, but not too many. Has he ever tried steroids for treatment instead of ivig or in combination with ivig? Take care.
May 26, 2008 at 10:43 am
How long has your father been sick for? Are there any varients involved? DOes he have relapsing/remmitting, or progressive? Although ivig is the treatment for all of them, other things are sometimes added. Each person is different, and they respond to different treatments (ivig, plasma pheresis, steroids, cell cept imuron) As well, the time between the treatment plan is dependant on how quickly the person uses up (for lack of a better way to articulate it). Kevin, my eleven y/o gets loading doses monthly over 4 days for 6 hours and 40 minutes each day. A loading dose is comprised of 2g/kg. For example, Kevin weighs 117lbs and gets 100 grams of ivig, 25 each day. (we are a little shy of the 2g/kg) Others get one loading dose (2g/kg) and then follow up with maint. doses. Some may get the maint dose (1g/kg) weekly, bi weekly, or more. It is an individualized program that is tailored based on your response to the ivig and the frequency of the return of your symptoms. This is the relapsing remmitting, as my son has. The idea being that you want to find a plan that does not allow a relapse so the myelin sheath can start repairing. Every time there is a relapse, more damage is done and the strides you made are gone.
FYI ivig has a full life of 42 days, this means that the maximum it can last is 42 days if your body uses it up at the slowest rate. The half life is 21 days. Try and ask your dad how soon is symptoms recurr after treatments. Good luck!!
Dawn Kevies mom
AnonymousMay 26, 2008 at 12:25 pm
I believe my mom has possibly even talked to some of you…My Dad was finally diagnosed back in January 2008 or so. He did the prednisone and emeron route….got worse, and actually became sick after going to Disney and a week later got Sepsis. So they immediately took him off those medicines and have begun him on IVIG…He did his first 5 day start in the hospital and then 6 weeks later he had his second dose of 2 days. His treatments are 6 weeks apart….not sure what his doses are.
May 26, 2008 at 2:25 pm
Your mom and I have spoke. I think the treatments are too far apart. Tell her to check her private messages or e-mail, I responded to her a little late, so she may not have seen my reply. I personally think the treatments are too far apart. Especially if they are maint. doses, as they do not last the full 42 days. I think at the very least, you guys should try every three weeks and try to work it to a month after some time at three weeks. IF he is on maint. doses and has faltered, it would probably be a good idea to reload. (maybe he is already getting loading doses, check) As I mentioned, my son is doing awesome and COULD go longer but the docs feel the best way to repair is stay ahead of a relapse. As well, some theories of how ivig work suggest that flooding the body with ivig (antibodies) presents the best opportunity to get rid of the bad autoantibodies. Much more complicated, but the basic way to explain it. Good luck, and tell your mom to check e-mails or private messages.
AnonymousMay 26, 2008 at 7:23 pm
Thanks to everyone for the quick replies. This is a great site!! Very Supportive!
Did you have any trouble getting your physician to decrease the time between doses? Have you come across any articles that support giving IVIG every 3-4 weeks? I guess we just need to be bold in our approach and be patient with the doctors. I would think that when they don’t see significant gains with treatment that they would want to change the protocol, but they seem to be apprehensive with change. Anyways, what I have read is the patient should be given 2g/kg divided into 5 smaller doses of 400 mg/kg of body weight for 5 days followed by monthly IVIG of 600 mg/kg of body weight. I also read that the older you get you should not be given more than 400 mg/kg of body weight…higher levels not recommended due to cause of stroke, heart attack, etc…
Any written articles that support doses or time between treatments would be appreciated in order to show the doctor as a resource of information. Thank you all for your responses and I will have my mom check her emails and stuff to make sure she has gotten your information. Thank you!!
May 26, 2008 at 10:56 pm
Some time ago I mailed your mom a packet of several abstracts that I had compiled that support ivig and frequent doses. It was around the time your dad was getting the imuron. Ask her to look for them.
Let me know if you can’t find them.
AnonymousMay 27, 2008 at 9:11 am
My neuro was a little reluctant to go down to every three weeks at first but I can’t tolerate higher doses of IVIg and I start feeling symptoms return about 15-18 days after my IVIg treatment ends. It has worked out pretty well for me the last few months though and we can all see definite improvement in the mobility of my arms and legs. I think even my neuro is impressed. I get 30g/day for three days every three weeks. My infusions last from 2-8 hours depending on whether I’ve had that batch before and we know whether it will give me an allergic reaction or not. I’m starting prednisone with my next treatment, this weekend, so hopefully that will squash the allergic reactions.
Take care, good luck, and stick up for yourself. Going from every 6 weeks to every 4 weeks was our idea as was going from every 4 weeks to every 3 weeks and it was the right thing to do for my body. I am getting better faster, though still too slowly for my impatient attitude.
AnonymousMay 27, 2008 at 11:19 am
As others have said, everyone is different. You could go as high as 5mg/kg of body weight. I receive 4mg/kg every three weeks and have been told by my Neurologist that I could go as far out as four weeks. I am also on prednisone and am tapering down in hopes of eventually stopping it all together. I am now on 5mg per day and have be on as much as 100mg. per day. I was diagnosed in 1984 at age 50. The life of the Immune globulin depends on the brand you receive. Also the brand factors into how quickly it may be in infused.
AnonymousMay 27, 2008 at 1:14 pm
All these different doses!! It’s sounds like it is just like any other meds….everyone responds differently to different doses depending on the severity of their case….the main thing that I have received is that most are getting treatments every 3-4 weeks unlike my dad at 6 weeks. I am not sure what his doses are but it seems that you can safely go at 4g/kg….thanks for all your help.These are questions to pose to the docs and get answers to their reasoning behind their ways of doing things. Has anyone been treated with Cyclosporin along with IVIG?
AnonymousMay 27, 2008 at 1:59 pm
I am new to this site as of today.
I would like to ask for a favor of any and everyone right off the bat, before I can do what I would like to do, which is read more about everyone else’s experiences with CIDP.
I have received my first three “induction” doses of IVIG, but got completely puzzled when told by the outpatient infusion department that “my” IVIG for the next two days of the five day starter tx, had been diverted to the ICU.
The chief pharmacist at the hospital told me the “allotment” of IVIG for the hospital had been used early in the month.
Of course I would want anyone in the ICU to get the IVIG first. Afterall, this is a triage situation.
Then I discovered doctors were putting their regular patients who had been getting infusions in the outpatient center, into the ICU, so their patients could get the IVIG because Medicare (?) wouldn’t pay for it otherwise.
That got me to looking up a whole lot about the access to IVIG news that has been going on that I new nothing about.
When I saw the bill for the IVIG treatment, I about stroked. The pharmacist confirmed it, but the IVIG actual cost got buried in the whole hospital bill (they had to cost shift in order to get paid).
I’ve gone through different sites to nail down on paper the cost of IVIG, per litre, for the stuff itself (like gammunex vs gamma guard and my company is changing me from the gamma guard to the gammunex).
Is their anyone who has a really good, self-explanatory bill, or website, or insurance company that can be called to get a printed, honest cost of a bag of this stuff?
When I tell people, like my disability carrier, they can’t believe $21,000 a litre and they certainly can’t believe that I’ve heard people tell me $26,000. They think I am telling them the whole cost of the RNs, the infusion chair hourly cost and perhaps the whole week’s worth of infusion.
I need it kind of soon due to a telephone SSA disability appt. on June 5.
Apologize for asking for a favor before being able to offer something first.
Promise to do so. Osler.:p
PS. My birthday is this week and don’t know much about (anything) blogs and web-sites, but if I don’t get this other disability (not SSA) filed by my birthday this week, the percentage I’ll get for life from this different disability policy will go down by a large amount, just due to being a year older. (Just like being one day late on a charge card payment!!!)
May 27, 2008 at 2:52 pm
A couple of months ago I called the manufacturer myself. Gammaguard was $68 a gram and Gammunex was I think$90 or 120. Our nursing charge is $163 for two hours, the discounted amount is $140 (insurance payment) The nursing/infusion company charges $128 a gram for the gammaguard. You can deal directly with the pharmaceutical companies and get the no middleman cost, as well they will set up nursing for you. Yes, there are shortages, but they can borrow from other hospitals, that happened to my 11y/o the first time. It would be best if your doc or pharmacist advocates for you so that you get your first full loading dose. In the future, you can sign up directly with the companies to be on a list that guarantees you the ivig. A certain amount is put asside for enrolled patients, and they are guaranteed first. There are only a certain amount of people they take new each year, so look into it. pm me and I will give you my number if you like.
Dawn Kevies mom
AnonymousMay 27, 2008 at 4:18 pm
Hi, I pulled the Medicare bill for my last IVIG I received in October at the local hospital here in Fort Collins. This was at the infusion center for outpatients. I received Gammunex for five days. The charges for 40 grams each day was $11,625 plus $490 for nursing care. It was my understanding that Medicare won’t pay for in-home IVIG but that may have changed.
Currently, I am not receiving IVIG anymore since we switched to Rituxan infusions to treat my underlying lymphoma.
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