If you've had IVIG, what was/is your dosage per kg of body weight? How often? How slow is your drip? What premeds do you take? Did you have a loading dose the first time?
If it's not ok to post these here, a PM would help me tremendously.
Also, what diagnosis got it approved for you? I'm wondering if the diagnosis affects the dose you can be approved for.
As always, thank you tremendously!
Posted by susank (Member # 22150) on :
What is your diagnosis for IVIG? Have you been qualified - preparing for first infusion? I'll try to answer more as soon as I can and have more info from you.
Posted by WPinVA (Member # 33581) on :
I don't have an answer, but can you please post more when you learn more, share any responses from PMs, etc?
I would like to learn more about IVIG too. I have an immune deficiency so IF I ultimately get IVIG, it would be based on that.
Posted by SickSam (Member # 45330) on :
Sure will WPinVA.
susank, I haven't been qualified yet, but my insurance is amazing and very lax, so I really don't think I'll have a problem getting it approved. They have approved everything (Rocephin, etc) with absolutely zero problems so far.
I had a skin punch biopsy that came back low normal, so we can't use that... I had blood drawn for IgG and IgM testing yesterday (not subclasses, just total overall), but I suspect they will come back OK. I've had them tested once before.
It is possible that we may try for IVIG with just my POTS diagnosis. It is well-documented with tilt table tests. They say that its next to impossible to get it with just POTS with most insurances, but I really don't think it will be a problem with mine.
Posted by Theresa (Member # 421) on :
I just went off ivig last month. I was on it almost year. I don't know what the dosage was per my body wait. It was a 3 hour infusions .
I premeditated with prednisone and benedryl and ibuprofen. I was given this protocol after being diagnosed with chronic imflammatory demylinating polyneuropathy, an autoimmune disease. my ana was posive, anticardiolipin high. Of course the usual
suspects, lyme, babs and bart and assorted viruses and parasites. I was approved by medicare. I think it helped the neuropathy but did not cure it.I am with an integrative doctor now and we are trying
other alternatives. I had to stop abx due to liver.
hope this helps. Theresa
Posted by SickSam (Member # 45330) on :
Thanks, Theresa, very good to know! Did you take abx while doing IVIG?
I had read that sometimes prednisone is used as a pre-med, but I've wondered if they would use it in s Lyme patient. I guess if your being pumped full of immunoglobulins then prednisone isn't quite as bad as it would be otherwise.
Posted by Theresa (Member # 421) on :
I was on doxy iv and various oral abx for the first 4 month then the liver enzymes got high. I never had any bad reactions. good luck with the treatment. Theresa
Posted by SickSam (Member # 45330) on :
Thanks for the info Theresa!
Spoke with doc today, in case anyone's interested. He plans on doing a vaccine challenge to try and prove an immune deficiency.
He also mentioned that the IVIG loading dose is 4mg per kg of body weight, over 3 days.
[ 11-20-2015, 07:57 PM: Message edited by: SickSam ]
Posted by WPinVA (Member # 33581) on :
Does that mean you have to take a vaccine? How do you feel about that?
Posted by SickSam (Member # 45330) on :
Honestly I'm pretty nervous about the vaccine. They test you for pneumonia antibodies, give you a vaccine, and then retest you a month later to see if you developed antibodies against the vaccine. If not, then you've been proven immunodeficient. That's my understanding anyway.
At one time I was doing something called "vaccine neutralization". My doc never really explained what was in the shot I was getting twice a week, but I think it was a vaccine. I should've asked more questions. Anyway, the last one I took gave me an unpleasant reaction, so I really am nervous about doing this.
Posted by Theresa (Member # 421) on :
I relapsed this time around after getting the flue shot.also developed autoimmune disease after it theresa.
Posted by susank (Member # 22150) on :
Sam - would you mind sending me a PM - what city -and what immuno you see?
Theresa - are you perhaps on the IDF forum?
Posted by Theresa (Member # 421) on :
Susank this is the only forum I am on. theresa
Posted by WPinVA (Member # 33581) on :
Have you had your IGG levels checked, including subclasses?
Posted by SickSam (Member # 45330) on :
Susank, PM sent.
WPinVA, I had IgG subclasses checked a few months back and all was normal.
Posted by WPinVA (Member # 33581) on :
Perhaps your doctor is building a case for insurance coverage for IVIG. Or he could be seeing if you really need the IVIG.
My son has low IGG and had the vaccine challenge and passed. So no IVIG. He does ok with vaccines, but he doesn't have Lyme.
Now I have low IGG but not that low. But I catch EVERYTHING. I do NOT want to do the vaccine challenge. So I'm hoping there's another way.
My immunologist said that the IGG numbers don't always show the whole picture.
That's great that you have great insurance. My doctors are telling me that it's very hard to get coverage for IVIG.
Posted by SickSam (Member # 45330) on :
That's what he's doing, trying to build the insurance case for IVIG. He said he is sure I have small fiber neuropathy (my biopsy was on the low side of normal), but he says that convincing an insurance company is another matter.
I catch everything too, always have even before I knew I had Lyme. I really don't want to do the vaccine challenge either. Posted by Littlesprout (Member # 7406) on :
I game 50 g IVIG every 3 Wks. Not per body weight. Gamanex C. Suppose to be the best type. Have Cigna. Hubby had to go to his HR for coverage
Posted by SickSam (Member # 45330) on :
Thanks littlesprout!
You don't weigh around 110 lbs by chance do you? Just slap me if I shouldn't be asking...
The prescribing information seems to imply that the dose is usually based on body weight, so that's why I'm wondering:
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