IVIG reaction

    • April 1, 2015 at 7:49 pm

      Old poster (GBS 2011) but I am back hoping for advice I just started IVIG again 150 grams this week 30 grams a day. My neurologist has reclassified me under CIDP now, so I am open to trying it again. I got slammed Yesterday with a migraine that wont quit after the infusion,I have been prepping with the Benadryl and Tylenol prior and Tylenol after as well. I was ok day 1 slight discomfort but day two I believe my infusion rate was 150. By night time my head felt like it was going to explode ( still does ). Looks like the brand is Octagam as well if that helps? Any suggestions

    • April 1, 2015 at 8:28 pm

      Something fishy with CIDP diagnosis (my own) if you ask me. In the time I was diagnosed with CIDP and 6 weeks after starting my infusions I had a C5 & C6 ACSF for Cervical Spinal Stenosis. I have 4 more infusions before (2xmonth for 6 months) I decided to stop. I simply feel it hasn’t offered me much, and the surgery has completely corrected my left side weakness. The only remaining issues is the polyneuropathy and short term memory issues. I just cannot find 2 Neurologist who agree or even come close to anything. Even the MRI Image where EVERYONE can see the compression of the spinal cord, they all had different opinions to what the outcome would be. For 2 years, they had me convinced I had COPD. The day after surgery I could walk normally, climb stairs without being winded and my Oxygen level is up from 94 – 95 and now 99 – 100%. Getting not to trust opinions so much.

      As for the infusion itself, I have no real issues with it a little itchy, but no headaches, it just doesn’t seem to do much of anything for me. I just find it interesting how some Doctors are fixated on using it more interested then finding an actual cause. I guess it’s the path of least resistence for them. My brand is gamunex-c. Can I ask what symptoms your being treated for?

    • April 1, 2015 at 9:02 pm

      The reaction to IVIg you describe could be a mild case of Aseptic Meningitis. According to what I’ve read on-line, Aseptic Meningitis is usually caused by viruses (e.g., enterovirus) and most people can recover from it. It does have implications for treatment with IVIg. SCIg is said to be a better alternative for those with Aseptic Meningitis AND suffering from CIDP. Please see the following publications for more information:

      According to many posts on the NeuroTalk forums, Plasmapheresis is the treatment of choice for those where IVIg triggers Aseptic Meningitis. SCIg is the other treatment of choice.

      Perhaps you should consider getting a second opinion from a CIDP specialist?

    • jk
      April 1, 2015 at 9:33 pm

      It seems to me that a ‘standard’ recommended loading dose of IVIG for CIDP was 2g/kg over 2 to 5 days. So, let’s say you are 75kg (165 lbs). Hence 2*75 = 150g.

      However, the headache part, in my experience, had more to do with the infusion rate and hydration levels than with the levels of Benadryl or Tylenol. Drink water and more water the day before and every day during infusion. At least, that helped me.

      Equally important, is reigning in the nurse(s) desire to get in you quickly and get you out the door quickly. Your doctor should have specified an infusion rate in the initial order. Ask the nurse to see the order. If necessary, call your doctor.

      The Octagam product information sheet lists one suggested infusion rate as: “Administration OCTAGAM 10% [100 mg/mL] should be infused intravenously at an initial rate of 0.6 to 1.2 mL/kg/hour for 30 minutes. If well tolerated, the rate of administration may gradually be increased to a maximum of 7.2 mL/kg/hour.”

      Therefore, the initial rate, for a 75 kg person would be in the range of 0.6*75 to 1.2*75 or 45ml to 90 ml per hour.

      Personally, I was never able to go that high. Flushing was the first warning sign for me.

      Ultimately, the infusion tubing size determines the drip rate and it might behoove you to find out what tubing and what drip rate, that is the number of drops you see falling from the bottle into the tube each minute compared to the doctor’s order.

      Edited to add: It is common now to use electronic infusion pumps. These pumps offer much better control than the old style compression tubing squeeze fitting.

      Of course, every situation and person is unique. If, by a rate of 150, you mean 150 ml per hour there is no chance I would have tolerated that. It sounds as if you don’t tolerate it either.

      However, the headache could have entirely other causes. Please check with your doctor.

    • April 1, 2015 at 9:56 pm

      Thanks for the quick responses ….yes it was 150ml per hour day 2 , I believe day 1 the nurse bumped it to 100ml/hr max. I had GBS in 2011 and never really fully recovered, it always has been well wait and see nerves take awhile to heal etc. Well recently I started having bilateral descending weakness in the legs along with my autonomic dysfunction that certainly never got better from the initial onset. I was told it was rare for my ANS to be targeted so heavily in the case of GBS. Past six months have taken some big steps backwards with health so doc wanted to give IVIG a go again . I just wanted to get this week rolling with IVIG then look into SCIG but of course it never pays to rush

    • April 1, 2015 at 10:07 pm

      I should add as well part of my autonomic dysfunction is my ability to stay hydrated as well no matter how much water, or electrolyte drink I use I am always on the low-side of BP which they have me on midodrine plus a beta blocker for the postural orthostatic tachycardia. My current weight is 165lbs, so yes the 150ml per hour certainly could of brought this on

    • April 1, 2015 at 10:42 pm

      sorry to hear about your head – that can be miserable! I have gotten aseptic meningitis a few times and its brutal… If they have Toradol ask for that (it was amazing for my head).. Otherwise I’d say slow your rate down.. If I go above 100, i start spiking a temp and getting meningitis symptoms… hydrate of course.. and sometimes people have to do steriods if they can’t avoid the headaches. Good luck! Oh and ibuprofen works better than tylenol for the headaches and symptoms I think.. Good luck!!! Hope you get some relief!

    • April 2, 2015 at 10:54 am

      I had the nurse run saline today before hoping to possibly alleviate some effects. I feel like the headache is still from infusion Tues when it was up to 150ml/hr …. Idk if I’m reacting each day or is just lasting…. Running 75ml/hr today. Tomorrow is the last day