what happens when ivig is pulled abruptly?

    • Anonymous
      June 2, 2010 at 9:05 am

      NH medicaid has decided in their wisdom that I don’t need home infusion for ivig. they have decided that I can go to an outpatient infusion ctr. for my 12-15 hr infusion once a week.

      the trick is that I get 45 gms of octigam plus one liter D5W. At home the nurse would do the ivig , than I would do my D5W , flush and de-accesss my port. The outpatient infusion centers will not allow me to take the D5W home, and they are not open long enough to do the whole infusion. They are suggesting a hospital short stay with medicaid is refusing to pay for.

      this morning the infusion ctr at the hospital that I’m trying to work with suggested that I come into the ER for an emergency ivig infusion, but they only have gamaguard in thier formulary and i have never taken this form of ivig, therefore don’t know the benefits of side effects to me, and it is not what my dr has rx’d.

      In the mean time, my walking , torso strength, grip strength is getting worse. I have involuntarty movement in my right eye resulting in sporatic double vision, and I ache all over. Additionally I have spent 12 of the last 21 days in the hospital on a seizure unit for what has been dx’d as non-epileptic seizures. On low dose antiseizure/ anxiety meds and still having breakthru tremors and clonic tonic movments.

      my Rx is for weekly ivig with D5W. I have had one infusion in the past 4 weeks.

      Any ideas?


    • Anonymous
      June 2, 2010 at 10:23 am


      I had a taste of that same sort of wisdom. Mine had to do with something called “home bound.” Doesn’t matter does it? They dropped us.

      Some folks say be very careful about changing brands. Therefore, given that-

      I got my first IVIG, in the hospital, about 40g in 400ml each day, taking 6 hours, or so, over 5 days. The Hospital pharmacy limited my infusion rate to 70 ml/hour because I had an allergic reaction the first day. You don’t say why you need 15 hours……

      You said you are getting 45g. In a 10% solution that would yield something on the order of 450ml total. Let’s see 450ml/15hr = 30ml hour, right? I’m not so good with chemistry equations, but my volumes are listed on the bottle the stuff comes in.

      Bottom line, over time, “we” (me and the doctors) gradually increased the infusion rate to this: 40ml/hr for 1/2 hour; 110 ml/hour for 1/2 hour; 220 ml/hr for the remainder.

      The key, for me, was careful monitoring of my skin tone, heart rate and, most importantly, my blood pressure. So, if your 15 hours is not locked in stone, and if you could increase your rate, you could go the outpatient route.

      On the other hand, for a few months I got infused on two consecutive days per week. Nothing I know of requires you get that whole dose at once. I’m sure, were it me I’d do both. Speed up and split the days. But, hey, whadda I know?

      Talk to your doctor about it. Find a new doctor. Good luck.

      Oh, sorry. I didn’t answer the pulled abruptly question. Every case is different. I have been stopped abruptly on two occasions. The first time, as the months went by, I got weaker. The second time, for only 3 weeks, I couldn’t notice any change.

    • June 2, 2010 at 1:14 pm


      Realizing everyone responds a little differently to the various brands of IVIG, the amount of time they are taking to infuse 45 grams seems to be extremely slow. Is your doctor giving you pre-meds to offset potential reactions? I have been getting 100 grams (Gamunex) every three weeks for the past 15 months and they infuse it at a 250 rate which gets a 20 gram bottle done in 45 minutes, so my total time in the op center is only about 4 1/2 hours. I get 1 benadryl tablet, 2 tylanol and 125mg iv prednisone 30 minutes prior to the start of the infusons. Only reaction I get is a slight facial rash and some itching about a week after infusion, but take oral prednisone for 2-4 days and that goes away.
      Talk to your doctor about pre-meds if you are not getting any, and if so, ask him if they can increase the rate, and if not, ask him about taking the dose over two days. It can be frustrating, but stay after them. Good luck.

      Oh, one other thing. You can talk to your doctor about brands of IVIG. All brands except Gamunex are processed with glucose, while Gamunex is processed with amino acids. Clinical studies have shown some patients have fewer reactions to Gamunex and have longer lasting benifits. When I started my IVIG, the hospital pharmacy stocked another brand processed with glucose so my doctor stated “brand specific” and the hospital orders it in for me based on physician orders. Gamunex was FDA approved for CIDP in September 2008, so your medicade should allow it.

    • Anonymous
      June 2, 2010 at 5:39 pm

      Thanks for your replies.

      the reason for the 15 hrs is I have to do my D5W quite slow or I get really sick, high fever and GI havoc. The 45 gms of octigam takes abt 6 hrs. The D5W takes abt 9 now, used to be 12.

      The other problem is the outpatient infusion ctrs are not open long enough to do the D5W, so they want to to find a way to do it at home, but not get it from the hospitals due to liable.

      And finally today, after calling 8 hospitals, I only found 2 that can get octigam and they are both 1 hr away.

      Yes I do pre-med with tylenol and benedryl, but can’t take steriods due to other medical issues.

      But the kicker in all of this, is because I am not prone to instituionalization, the state is willing to pay an extra $4200./wk for me to go to an outpatient infusion center instead of having home infusion! That’s as much as my yearly property taxes! What a rip off to the people of NH!

    • Anonymous
      June 2, 2010 at 5:59 pm

      I only have a quick minute to respond.

      Have your neurologist contact your insurance company. Usually if the dr gets on board & sends a letter to them they will go with his orders.

      You can also appeal the decision & break down the cost for them. Let them know you will have to do a 2 day infusion at the infusion center or they will have to pay extra for the hospital to get your brand of IVIG AND for the cost for you to spend a day in the hospital.

      Once they do the math they are more than likely to let this go & allow you to do the home infusions, which I’m sure end up being cheaper than a hospital day or 2 days at an infusion center.

      Your dr can also contact your hospital & put orders in for your brand of IVIG. Hospitals can trade IVIG with each other & I’m sure there is somewhere else that has your brand that is willing to switch. We had to do this once with our daughter.

      Good luck,

    • Anonymous
      June 2, 2010 at 7:56 pm

      my neuro has been trying to get in touch with medicaid, they don’t want to listen to him cuz he’s an out of state dr. I have a new pcp who is working with my neuro and agreeing with treatment, but he’s never encountered anything like this and doesn’t know how to fight the system.
      I spoke to pharmasist at 5 different hospitals today. Only one could easily get octigam, and they are over an hr away. two others said in a few weeks with special orders they may be able to. the other 2 said no way at all.
      the kicker is that even the cheapest one would cost more than $4000./wk more than home infusion. That’s a huge amt of tax payer $.

    • Anonymous
      June 2, 2010 at 8:55 pm

      When your dr gets through to Medicaid have him tell them there is a $4000 dollar increase to them. Maybe that will get them to change their minds.

      If I were you, I would drive to the hospital with Octagam. No sense in switching brands now when you are feeling CIDP symptoms. You want something you know that works.

      Hopefully that will give your regular hospital time to order Octagam. Have you tried to call Octagam yourself? They may be able to help you with this. Emily gets Gammaguard & they have fantastic customer service.


    • Anonymous
      June 2, 2010 at 10:15 pm

      I guess (man, that’s a bad deal this guessing) the D5W flushes out your port, or what??

      Then take 1/2 of each thing you are infusing and do it over a two day period.

      Then you can use the local infusion center for 7.5 hours each day. That way they’ll be open.

      Well, if your Dr. agrees, of course.

    • Anonymous
      June 3, 2010 at 12:39 am


      Why do you need the D5W right after the infusion? [My understanding is that D5W pulls water out of the blood and into the cells.] If you did not need the D5W right away, maybe you could have the IVIg at home and then go to an infusion center the next day for the D5W?


    • Anonymous
      June 3, 2010 at 9:21 am

      the d5w pushes the octigam which is very thick into the cells to increase it’s effectiveness. Medicaid doesn’t want to pay for d5w infusion at an infusion ctr. Additionally I’m not so crazy abt spending 2 days every single wk in and infusion ctr.
      splitting th dosing over two days will increase the costs to me and other tax payers.
      the lest expensive option is still home infusion.
      I’m filing a complaint with my state attorney generals office this morning for medicaid fraud, and denial of treatment.
      Don’t know what else to do.

    • Anonymous
      June 5, 2010 at 5:59 pm

      Medicare makes it harder from all I understand for the additional costs you’ve stated! It’s a ‘precaution’ from the payor viewpoint, because some folks can and do get IG reactions, at times severe [I did -IN A HOSPITAL? And they let me go home on my own!] I opted for home infusions after that! No brainer-but I’ll be entering the ‘medicare whirlwind’ soon enough and the protocol is outdated. Especially IF one does just fine at home?
      I do know that going from hospital to home infusions cut about $2,000. off each bill to the insurance company? Where are the practical or ‘great’ brains dealing with adding up these sets of 2+2’s?
      I truly wish I could help you in all this! I’ve yet to approach this sort of mess myself, and I am dreading the time!
      The only help I can think of? Is the help sources at the magazine IG Living. I do know that they have helped me and many others in getting access to the right IG and the right resources to get things happening. But, You will have to do a lot of the legwork/phonework. They are very good at helping you get the IG you need!
      Let us know how things work? or Work out? My heart is with you on this. It’s technical and exhausting territory to learn and work with or around.
      Hugs and good things soon!

    • Anonymous
      June 9, 2010 at 2:37 am

      [QUOTE]the reason for the 15 hrs is I have to do my D5W quite slow or I get really sick, high fever and GI havoc. The 45 gms of octigam takes abt 6 hrs. The D5W takes abt 9 now, used to be 12.[/QUOTE] Nobody wants to get sick from the necessary infusions we get – Life is rough enough as it is. Octigam makes a 10% concentration IVIg which means you would only need 450 ML to be infused for the 45 grams of IVIg. Per their literature, you can start the infusion at approximately 100 ML the first 30 minutes and keep increasing – all the way up to over 500 ML/hr, but you would never want to exceed 250 ML/hr. However, looking at a reasonable infusion rate, and starting at 60 ML/hr for the first 30 min, then increasing to 120 ML for the next 30 min, then going to 250 ML/hr for the balance, this would cut your 45 grams of IVIg time down to 3:27 minutes.

      On your D5W, you can just do the best you can without making yourself sick. You are probably taking it at a 125 ML/hr. Like I said, you can just do what you can do, but increasing to just 150 ML/hr would decrease your time by about another 1.5 hours. In total that would be nearly a 5 hour reduction in time.

      Erin, I’m just like you, looking for the best out of each day, and hoping for the most out of the life I have left in me. If I see a way to maybe help someone, I’ll give it my best shot.

      Warmest regards.