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Infusion centers
Do you get infusions to treat your MG?
What are the infusion centers like?
What improvements would you like to see at the one you go to?
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6 Replies
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I did IVIG infusions at home for four months. I was feeling good. Then, my blood pressure was all over the chart. Four of my bloodwork readings were lower than they had been. They were still in the normal range, but the pharmacy that provided the infusion products told my neurologist that the infusions should be stopped.
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I receive weekly infusions at a local infusion center (currently 3 weeks on/4 weeks off). It has been nothing but pleasant. It’s a new facility so everything is clean and modern. Comfortable chairs, private rooms, TV, WiFi, Snacks and drinks, and most of all, a pleasant competent staff make it very easy.
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Since November 2022 I have received my infusions at a local ambulatory infusion center that is owned and operated by the infusion pharmacy that obtains my medication for gMG. I’m currently on infusion cycle for four weeks on then off for five weeks. I’m happy to say that it’s a very good setup. I know all three of the infusion nurses that administer the infusion process. It’s a clean and comfortable facility that is owned and operated by my Medicare Advantage Medical Group nonprofit parent company. What makes this so important is the Parent Organization is a nonprofit healthcare provider which owns the infusion pharmacy and the ambulatory infusion center as well. And my Medicare Advantage insurance provider has contacted with them for several decades.
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I have been receiving my Vyvgart Hytrulo injections at an infusion center once a week for four weeks on then fours weeks off for a couple years now and have always been pleased with the facility and staff. I have been very fortunate since taking the turn onto the GMG highway.
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Hi! Thanks for sharing this. It’s a great discussion and great feedback and insights!
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I have been receiving infusions for 6+ years now. I started off with IVIG. Those were hard lasting over 3 hours and leaving me with deep fatigue. Fortunately those only lasted for a short time as the purpose was to stabilize my condition and transition to Soliris. Soliris was great. The only drawback was the two week timeline for the infusions. It was hard to plan life around the schedule. After two years on Soliris I transitioned to Ultomiris which is on an eight week schedule.
My infusion center is affiliated with one of the local hospitals. I have had no issues with the center and its personnel. The only problem has been the hospitals insistence on recertifying my participation every third appointment even though Medicare only requires certification yearly. This results in my not receiving an appointmen time until a week to ten days before my usually schedule time. That uncertainty can result in some anxiety.
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