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Taking IVIG treatment

For the second time in 5 years I am being treated with IVIG to help bring my immune system from nothing to something. Has anyone else had to do this? The treatment gives me headaches from )(*) if you know what I mean. Just wondering if others have had to do this.

 

Paul

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  • My docs tried it with me but my body didnt like it.  Face swelled up a bit, even on a real slow drip.  As you know everyone responds differently to these.  BTW, I'm 12 years post TX and did 1.5 miles on a treadmill at 3 mph and then lifted weight today.  Yeah baby :)   

  • Oh, a P.S.., they also gave me a bag of saline simultaneously with the IVIG

  • Hi Paul. I have had the IVIG infusion which was done in two parts. The infusion people explained to me that by slowing down the administration of the IV, the headache issue can be resolved, or at least lessened. I'm having another infusion later this month and I will make sure that they administer the drip slowly. Makes a difference.

  • Headaches, post IVIG treatment, is a very common side effect. For whatever reason, I was spared the severe headaches, post-treatment.  I have learned from others, that reducing the speed of the infusion lessens the severity or occurrence of headaches, perhaps you can speak to your team about this. I am not sure why SCIG is not used more, given the amount of fact-based evidence of fewer such side effects.

    Now that you have the headaches, some have found relief by increasing hydration and using Tylenol or Benedryl to help tolerate the side effect.  I hope you find relief soon.

    IVIG headaches

    SCIG vs IVIG

     

     

     

    Evidence-based strategies to reduce intravenous immunoglobulin-induced headaches. - PubMed - NCBI
    Ann Pharmacother. 2015 Jun;49(6):715-26. doi: 10.1177/1060028015576362. Epub 2015 Mar 10. Review
  • I have not been administered the therapy.  Was exposed to it while working in Oncology.  Headaches are a really tough issue.  Have you had or considered SCIG?  I would suggest asking your physician about it unless there is a reason you are not a candidate.  Not sure if you need a larger dose that can only be done IVIG.  Potentially less side effects but your doc will tell you.

    On the bright side, that is a long time between that kind of treatment - so that is positive.  Even though I know it is not fun to have any extra treatments that bring us more side effects.

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