IVIG, Can body reject it??
March 22, 2010 at 1:44 pm
It’s been a while since I’ve posted, but would appreciate feed back from those who have been on IVIG and later had problems with it.
I was very stable for several years with PP and IV prednisone,but last year I began a pretty significant relapse, so my neuro decided to try the glucine based IVIG Gamunex, in conjunction with PP and IV solumedrol. Initiall I showed great improvement, taking 100mg Gamunex after PP and solumedrol every three weeks.
Did well for about 9 months, but then began to have what appears to be side effects from the IVIG. Rash, itching, then difficulty chewing and swallowing. Got so bad after last weeks IVIG, that doctor has me on 3 days, 500 mg IV solumedrol, which is helping. In addition to the above symptoms, I have started what appears to be another relapse.
Has anyone else experienced ititial success with IVIG, then developed adverse reactions, after a year ? Any input is appreciated.
March 22, 2010 at 2:54 pm
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.
March 22, 2010 at 5:11 pm
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.
March 22, 2010 at 7:44 pm
I get 125mg IV solumedrol and benadryl as premeds, 30 minutes prior to Gamunex. Get 100 grams infused at 250. Also take 2000 mg cellcept daily. The PE is every three weeks, with Gamunex the following day. Using this protocal since December of 09.
What has my doctor perplexed is that in years past IVIG had no effect on the CIDP. When Gamunex was FDA approved, we decided to try this brand because it is processed with glycine instead of glucose and in clinicals, some patients responded more favarobly and had longer lasting results. After two infusions of Gamunex, I began to see improvement up to the point where I was able to squat into a baseball catcher stance and push myself up off the floor. Can no longer do that, balance is slowing getting worse, then this most recent incident with chewing and swallowing.
Just seems so strange to be on a medication for a year with no problems, then out of nowhere. Perhaps just another quirk with this crazy disease.
Thanks for the feed back.
March 22, 2010 at 10:14 pm
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.
AnonymousMarch 24, 2010 at 10:05 pm
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!
March 25, 2010 at 9:27 am
Have been doing all of this in that I make sure that I only get the brand name as it comes in individually pre packaged 20 mg bottles. They tried to slip a generic in on the first infusion, but I refused to take it. Just finished three days if IV solumedrol and that really has me upside down. Just seems so weird that its been helpful and non problematic for over a year,then out of the blue, these difficult side effects. I have also tried cytoxin with no succcess, and have been taking cellcept for many years with no side effects.
You would think that after 15 years I would get the hang of these bumps along the way, but I guess when things are going well you tend to block out the bad stuff along the way. Thanks to all
March 25, 2010 at 12:17 pm
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!!
AnonymousMarch 28, 2010 at 4:22 am
😮 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. 🙂
AnonymousMarch 28, 2010 at 5:48 am
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!
March 28, 2010 at 5:43 pm
Thanks everyone. They were originally infusining at 400, but had immediate side effects and got them to slow it to 300, but still did not do well, so finally at 250, all of the immediate side effects stopped, but still had that sluggish feeling for a couple of days. I noticed my “down time” or recovery from the infusions had been increasing over the past couple of months, then after this last one (2 weeks ago) is when the swallowing and chewing difficulties started. The 3 days of 500 mg IV prednisone helped, but still not back to pre reaction levels. I can chew solid foods again, so thats a plus.
Guess I am spoiled because I had done so well for so long that I’ve forgotten how much and how quickly this disease can change. Supposed to hear from my neuro tomorrow (he’s been out of town for a week and no one else in the practice would make any changes other than the solumedrol), so guess he will offer his opinion on the possible problems with Gamunex.
Hopalong, have you tried PE? Over the years that served me very well. The Gamunex was added to the PE, solumedrol protocal just to see if it would do anything. As I posted, I made significant overall progress with it and PE together until this last go around. Good luck to you and hang in there.
Julie, I’ve followed your posts for a long time and am sorry to hear about your current difficulties, but happy to hear the sub-Q protocol is helping. Based on your results, I plan to ask my doc about this as a possible alternative in the event rate or brand change does not solve the problem.
I appreciate everyone’s feed back.
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