IVIG, Can body reject it??

I have read some members having later reactions. Before you give up on it, have your doc run a blood test to see if you are in fact allergic to it. Try asking to switch brands and give the solumedrol as a premed plus the solumedrol as a treatment. There are other imunosuppressants you can take as well. How often do you get pp? Can you get it more often? Keep us posted.

I had big time reaction after 10 yrs ivig. We now premedicate with 100 mg of hydrocortizone and slow down the infusion of gammunex to a max of 50 ml per hour.

No sides at all.

You should try pming Pam, she had luck with the cytoxan protocol. Ask if it is the cell cept causing the issues, as it was stated that cell cept does cause cns issues. Alice would help you too, she took the cytoxan a step further. Keep us posted.

Then be absolutely sure that the brand your neuro prescribed is what is on the bottle, or if a bag? It doesn’t say’ Brand name OR equivalent’ My hospital did that to me and gave me five different brands on differing days and all the other brands were cheaper and not as effective? But the hospital BILLED the insurance co for the richer stuff that I did not get… I contacted my US Senator and Area US House of Rep.s’ staffs and asked them who at the FDA had the regs on this stuff? Got it then and found out that the tracking system seems to be one way only…patients should be informed by their prescribing docs of changes but the pharmacies never bothered to inform the doc. Thus called the state’s medical licensing board about this issue and suddenly the infusion suites were ‘temporarily’ closed for about 3-4 days of intensive ‘re-training’. Can you imagine the fines? They and the pharamacy had not followed the very strict guidelines for the preparation, tracking and administration of IVIG. I was ready to give up on IVIG at that time until I found out all of this? Because the substitutes didn’t work and I got all sorts of reactions to them. Once you know all the laws about how IVIG is regulated? Then you must know almost as much [or more?] as how the IVIG is administered. After that? The infusion nurses would sidle up to me at the clinic and say ‘ we had to admit a patient who had a reaction to X, or Y or Z!’ They seemed grateful, [I was supposed to be anonomous in this process – but they knew me, I guess – but it saved and helped lots of folks even those w/o IVIG issues? But it’s mostly a cancer infusion center – Can you imagine?]
I found a good home nurse and pharmacy from another resource and am happy that I don’t have to drive home after IVIG and a slew of Benedryls…always scared me stupid on the way home.
Sometimes, your immune levels rise and the amount of IVIG may not be enough, ask your docs about this? Blood tests, new nerve conduction tests and maybe another ‘fun’ spinal’ could be on your menu. Docs should do this now and then anyhow? Even tho it costs insurance $?s because they have to continually justify your NEED for the IVIG THEN improvement from it. Good luck and super wishes for the near and far future! Wanting very hard for all here to have IMPROVEMENTS!

So sorry Gavol. Is there any possibility it is the cell cept causing the problem? Did you do the cytoxan the same way Pam and Ryan did? How about trying to contact Alice, she might be able to help you to see if her procedure is an option for you since nothing else is helping. I am so sorry you are going through this. We too are at a crossroads, I am lost with so many variables not knowing what is causing what!! Will say a prayer for you, all of us!!

Perhaps the rate is too fast. I believe that 250 ml/hour is at the fast end of the range of infusion rates. Rate can affect all sorts of reactions, not just the typical headache and nausea.

~MarkEns

😮 250mL/hour ????? Your body must have veins of steel… at 100mL/hour I got enough bad side effects that I’m now on sub-cutaneous Ig for fear of losing my kidneys and brain to inflammation. I’m just sitting here shuddering thinking of how awful I would feel if I went back to 250mL/hour. Please see if they can slow the rate down, even just once, to test to see if that is the problem. Your body needs a little time to adjust to the onslaught of syrupy-fluid filled with what is essentially the United Nations coming in to pacify an internal rebellion. They can either come in fast and cause lots of collateral damage, or they can ease their way in quietly putting out fires and restoring peace. Or at least that is the way I visualize it. 😮 Yes I do think you can be OK with IVIg for awhile and then get side effects. I went a whole year without side effects at 200mL/hour then whammo the meningitis kicked in and for the next three and a half years we spent trying to manage the slowly worsening side effects. For a time switching to weekly helped but after a few months the side effects kicked back in again. My body just decided it has had enough of dealing with the UN assault and is currently sitting around the peace-treaty table with Ambassador Vivaglobin. :p

In addition to the rate, you could also try switching the formula again, perhaps there is something in Gamunex that you are allergic to that isn’t found in other formulas. It can take time for allergies to build up and become life threatening but getting hives and trouble chewing and swallowing is not really a good sign.

And finally, from my own experience I had far more relapses on IVIg when my side effects were not in control. I don’t know if my body’s aversion to IVIg interferred with it doing it’s job or it’s just there was so much going on in my body there was little energy for healing. Once I got my side effects under control I started improving. Now that I am on sub-Q with virtually no side effects, even though I’m not quite getting enough yet, I’m still improving in ways I had not previously thought possible. Don’t underestimate the toll side effects can take on you.

And – don’t give up trying. 🙂

I have been getting ivig for 9 yrs.. this past year has been hell. Have tried premeds, steroids, infusion rate of 75.. extra fluids. this last round almost killed me .. literally.. Dr. is refusing to give me anymore. With out it I am in a chair unable to feed myself… Julie has shared about sub-cutaneous Ig. and I have hope again. I have been going every 6 wks for ivig… I go every day for 5 days..and it takes a good 7 days to recover and often end up back in tghe hospital. Have been unable to work even part time since july. I went merrily along for years getting ivig with no problem.. but now I can no longer take it.. research shows this is not unusual.. the body one dy says enough!! But hang in there.. You are not alone.. even if you feel it!