IVIG dosing/LP protocol

    • Anonymous
      August 27, 2011 at 12:00 am

      curious to know how much IVIG others here received on your loading dose. I see 2grm/kilo (and even more) quite a bit. My rx is only for 1grm/kilo so wondering if this amount is going to be enough to really give the tx a good fighting chance….

      also wondering what the protocol post LP has been for the rest of you. My dr. told me there is no reason to lay down post puncture and that the previous thought that it was helpful in preventing the post puncture migraine had been disproven. He even had me get up immediately after and walk my vials down to the lab. I was sent off with the advice I could return to work with no restrictions. I was ok for a while but 2.5 hours later I had a lot of back pain and then in the evening the classic headache came on…..and stayed for 4 days. even after the headache seemed to leave i didn’t feel quite right and still had back pain for over a week 1/2… just wondering how it’s been for others …


    • Anonymous
      August 27, 2011 at 11:10 am

      If the puncture is without complications, you would not require any protocol.

      Following my second lumbar puncture I went immediately about my business with no trouble what so ever.

      Not so for my first lumbar puncture. I suffered for days, nay a week or more, because my puncture was done at a place 100 miles from my home right before a July 4th weekend. The problem? I call it a leak. Yep, your spinal fluid is likely leaking out of the puncture site. this causes the prolonged headache.

      The solution- a procedure called a “blood patch.” Notify your doctor that you are still suffering. The procedure ‘should’ be offered.

      “They”, meaning the place 100 miles away, told me to go to the emergency room and request the procedure.

      I did not and luckily, eventually recovered. However, I wish, in hindsight, that I had received the blood patch immediately.

      From the NIH: “…Abstract

      [I]Post-lumbar puncture headache is a common complication of dural puncture. Treatment of severe cases with an epidural ‘blood patch’–injection of 10-20 ml autologous blood into the epidural space at the site of the dural puncture–is an effective and safe method with few and generally mild complications. The method has been used by anesthesiologists for many years with good results, but only rarely by radiologists, neurologists and other specialists who often perform lumbar punctures…[/I]”

      autologous, just as in the NWU Stem Cell Transplant Program merely means ‘your own.’

    • Anonymous
      August 27, 2011 at 12:26 pm

      I’ve had three LP’s and on the third didn’t lay down after and went waltzing out to lunch with a friend. Oh my gosh did I pay the price. They never mentioned the patch so I suffered in bed for 3 days. The first two LP’s I stayed flat out for 12 hours or so and never had a problem. I think gravity causes CSF to leak when you don’t lay down.