LAL Solace Patient Community

LAL Deficiency (Lysosomal Acid Lipase Disease) & Wolman Disease patient support

How long are your infusions?

My daughter will be starting her Kanuma infusions soon, and I was just wondering how long the infusions are that you or your children receive, and if you've ever had any reactions.

Thank you all for your help!!

Kindest regards,

Lisa

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Permalink Reply by Donna Lee on January 11, 2017 at 11:24am

Hi Lisa-

Please forgive the delayed response. We are updating this site and your question was not easy to find!

By now you probably already know that Kanuma infusions are given over about 2 hours. However, depending on the infusion center it can take some time to prepare the the infusion, and there maybe an observation period time afterward, at least in the beginning, to assure that the infusions are well tolerated. Sometimes the infusions may be given at a faster rate, but the slower the infusion the less likely a reaction. When possible we would have the patient alert us when they were on the way to the site that they were fine, with no fever or health problems so that we could start preparing the infusions in advance to start faster. It is advisable to reschedule if the patient has the flu or is not well.

I have never seen a reaction to Kanuma, but I have seen reactions to other enzyme replacement therapy infusions. Some signs and symptoms to look out for are rash, swelling, headache, difficulty swallowing, rapid heartbeat, change in blood pressure or difficulty breathing. The most common are mild, but if there is any kind of health problem following the infusion you must contact your doctor's office right away.

I hope the infusions are going well. They tend to be an adjustment early on and then eventually become routine. I hope your daughter is doing well and getting used to the enzyme replacement therapy. I would love to hear how it's going.

Again I am sorry for the delayed reply- probably you already know all about the infusions by now. I will try to have the site make the posts more visible, but if you have any other questions, please feel free to send a message as well.