methods of IVIG administration
AnonymousAugust 7, 2007 at 7:09 pm
My son receives IVIG every 3 months as an outpatient at our local hospital. He is becoming increasingly intolerant of the treatments (extreme headaches, nausea, confusion, etc.).
Our nurse mentioned that she recently attended a seminar where alternative methods of IVIG administration were discussed. In particular, it was mentioned that CIDP patients who did not tolerate high dosages of IVIG over short periods of time (for Adam it takes 2 days) benefited by receiving smaller doses over a five day period administered at a constant rate through the abdomen. This method could be done at home by the patient–who is able to carry on with his life more or less normally during the treatment. It was also thought that this method kept the level of immunaglogulins steady for a longer period of time. (One of the nurses showed me the type of device that would be used–she was currently using it herself for insulin. She wore it on her waistband and the end was attached to her lower abdomen. It looked very non-invasive.)
Adam’s veins are also pretty much “wore out”–we have been thinking of getting a port. We really don’t want to do this because Adam is pretty thin (5’11″/135 lbs) and as he is 16-years-old, the cosmetic issue is definitely a factor. (I’m also leery of this because his Grandfather just got out of the hospital Sunday after his port caused a bacterial infection that nearly killed him and caused his kidneys to completely shut down.)
Adam is definitely sick and tired of being “stuck” and of being so ill after the treatments, so we are looking for alternatives. This option sounds like it could be a life-saver.
Have any of you heard of this, or better yet, has anyone tried it?
Adam has an appointment with his neurologist this coming Monday and I would love to have some first-hand accounts to bring up when I discuss this with him.
AnonymousAugust 7, 2007 at 7:40 pm
I have not tried that method of infusion…however, I’m not so sure that I
would want to try it. The reason, I have a port, just below my collarbone
and it shows just a little bump. This was my second one, the first came
apart on my left side after about 5 years of use. It was necessary to have
one put in because my veins were collapsing after repeated use over years.
I am so happy with it…it frees my arms for use, it’s easier to use the rest-
room, I go about my day because I use a portable pump…I go outside and
get my mail, eat, etc.
It seems like having it in the stomach would be hard…using the restroom
from the infusion…I go twice an hour.
However, if your son wants to do it, can do it…then see about having it
His size or weight should not have any bearing on a chest port.
Either way…good luck to you and your son…life is so much better without
an infusion in your arms…lol…that’s so much better.
AnonymousAugust 7, 2007 at 9:43 pm
It sounds like you are describing subcutaneous ivig. It is a differently formulated Ig – in addition to the comforts of being to administer it yourself at home (after training), the amount of infused liquid is much less. I had posted a link to a ppt presentation on it about 6 months or so ago on this forum. Try the search function – I’ll post the link if I can find it again.
Several of the members here have inquired about it for themselves, including me (for my daughter), but as far as I know, it is only being used by those with primary immune deficiency. Good luck with your inquiries – and let us know how it goes. I’m sure many here would be interested.
AnonymousAugust 7, 2007 at 9:47 pm
Thanks for the info–I couldn’t recall exactly what she had called it.
She did say that it was being used for CIDP–that’s what caught her attention in the first place. (of course-Adam is her first patient with CIDP in about 30 years of nursing in several parts of the country. LOL)
Anyway, it’s something to check into.
AnonymousAugust 7, 2007 at 9:54 pm
Anyway, it’s something to check into.[/QUOTE]
Here’s the link to the presentation:
In addition, I found this in my notes:
Ask for John Davis, the president of WestCare Infusion Services and he’ll give you info about this. They’re a small company but ship all over the country. Their pharmacist, Tommy, is a font of information also. Phone 1-800-392-2617 http://www.westcareinfusion.com|[url]www.westcareinfusion.com[/url]
hope this helps.
AnonymousAugust 7, 2007 at 9:59 pm
I just googled this and it sent me to cidpusa.org where there was an article about just this thing. Apparently, it is being used for CIDP patients who suffer from Asceptic Meningitis–which it has been suggested to me that Adam has.
(headache, fever,nausea and vomiting,drowsiness,confusion, sensitivity to light, etc.) Some CIDP patients have this because of IVIG.
Thank you so much for the name!!
AnonymousAugust 7, 2007 at 9:59 pm
Is Adam pre medicated with tylenol and benadryl before his ivig? If not he should be to see if it will help with his post infusion problems. If he is and he is having those sideeffects-have him checked for aseptic menigitis-from the ivig. the place of infusion is not going to change his reactions, no matter where or how he is infused. Try having the ivig infused at a slower rate, then ramp up slowly. the fast infusion rate will cause bad effects also. Usually ivig ports or picc lines are used for gbs/cidp patients. A stomach port is invasive. Make sure he has plenty of fluids everyday and increase it during the infusion. Good Luck, Take care.
AnonymousAugust 7, 2007 at 10:02 pm
Yes, Adam has the premeds.
It is not the site of the infusion that makes this different. The dosage is spread evenly out over five day periods, several times a month–and the levels remain stable, instead of a large amount at one time. For example, right now Adam has 2 days of IVIG every 12 weeks. After the first day he feels fine, but after the 2nd day he has all the symptoms I mentioned. This seems to point to the amount of IVIG in his system at one time.
He is actually very sick right this moment–migraine medicine doesn’t help, amitriptiline doesn’t help, vicodin & darvacet don’t help, zofran a finigrine only help marginally, because he throws it up as soon as he takes it.
I’m just looking for options. Really, it seems like I have to do my own research–the doctors keep saying this is just something he has to deal with–and I don’t think that should have to be the case. This has been going on for 2 years for heavens sake!
I apologize if this sounds short–I am just so frustrated.
AnonymousAugust 7, 2007 at 10:10 pm
I have had my second port now, for about 5 years, it really doesn’t show
unless you are looking for it.
Yes, I agree, your son shouldn’t be feeling so sick and throwing up like that.
Maybe, try another neurologist. I could understand a headache or such, but
there might be something going on.
Good luck to your son Adam…
AnonymousAugust 8, 2007 at 6:09 pm
Kim, Believe me I understand your frustration. Has Adam tried PP instead of ivig? If he has had aseptic menigitis everytime he has ivig-why continue it? I was told not to get ivig again-because of aseptic menigitis, it could get worse and let me tell you those effects are not fun at all! I was in the hospital when i got my ivig, the first night was fine, the second night went ok until the last 30 mins, then all hel! broke loose with me. the worse headache i’ve ever had, vomitting, fever, total pain all over, and nothing worked for 4 days. I was only supposed to get the 2 nights, 12 hours each of ivig then go from there. my lp showed a protein level of over 400, and i was just miserable. Consequently i can’t have any ivig now, and drs around here are afraid to try pp on me-they don’t want me to have any problems with it. If the dr won’t try pp, then find a dr who will, or use one of the other treatments. Don’t continue to put Adam through those horrible sideeffects any longer, it really is miserable and very depressing for him. Take care. by the way the most evasive part of pp are the needles. something to think about.
August 9, 2007 at 7:42 am
I too get the aspetic meningitis with the IVIg, along with the benadryl and tylenol, I take 4 mg of Dexamethasone before each infusion and for a couple of days after. The IVIg works for me where other treatments wouldn’t, so a little steriods every 5 weeks seems like the lesser of the evils. I think dealing with the CIDP basically has turned me into a lab rat, always something new to try, a new symptom to deal with. I go along hoping to see some improvement, or an easier way to deal with the disease. Once in a while we hit on something that works and it makes it worth the trail and error process.
AnonymousAugust 17, 2007 at 7:00 pm
This is my first “reply to” so bear with me! I am a new member. My son, 17 was diagnosed with CIDP almost two years ago. Two visits ago, our pediatric Neurologist told us about experiemental Subcutaneous injections over a period of a week. Alot of teens are becomming involved. Normally, my son gets one large dose, once a month for approx. 8-10 hours. With the sub-cue, he would give it to himself over a period of 4 weeks. (I believe it was once a week for 1-2 hours at a time) He could do it at home and would be free of the infusions that take so long. Although the neurologist said there are no definitives, it did make it easier for the kids, and also, he said in some cases, it would help to eliminate the “crash” toward the end of the month when he is due to have his infusions.
Sounds good, BUT, my son couldn’t imagine giving himself injections, 😮 so he opted for the day long infusion.
August 18, 2007 at 8:38 am
I’m with your son on self injections. I still can’t watch them take blood or put in the IV for my infusions. Can’t even watch it on TV. I suppose if it came down to having to I’d find a way to adjust.
August 18, 2007 at 11:02 am
I am so sorry Adam is still having difficulty! I also have read info on subcutaneous injections. Maybe they could be a source of relief for Adam. Good luck and I am glad others are responding to you with info. Compact Disc is very knowlegeable she is very helpful as well when you ask her questions. I think her daughter is around Adams age, maybe they could e-mail each other and Adam could ask her questions? Good luck to you guys!
Dawn Kevies mom 😮
AnonymousAugust 20, 2007 at 9:04 pm
Subcutaneous ig has not been approved by the FDA for CIDP as yet. Only for PID. Ohio State University is to do a study to see if this form of administration is as effective as IVIG. Supposedly after training, you could give yourself the shot, just as a diabetic gives himself his insulin injection.
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