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Vyvgart reaction
I have held off posting this because I wanted feel certain this was caused by vyvgart. But I’m posting to see if others have experienced this. So I started having water retention, nausea and headache with my infusion pretty much from day one. But it began progressing last cycle with bloating of my hands, feet and face. Uncomfortable but went down after a few days. Then this cycle my last two infusion it’s like my entire insides, feet, hands and face were bloated and I had nausea, vomiting and headache. When I say bloated I mean eating was painful. No one has heard of this happening. But yes it happens after the infusion and resolves and then happens again. My last episode was so bad I’m afraid to keep using it unfortunately even though it’s helping me. I don’t mean to instill fear or negativity this is my experience but I have to ask because I’m drawing blanks on help from my medical professionals.
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5 Replies
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I’m so sorry that you are having such a horrible reaction to this mostly helpful drug. I’m getting ready to begin my adventure with it within the next 2-6 weeks. I’ll pay special attention to anything that could be a side effect and let you know. I generally do pretty well because I stay on a plant-based diet that is also worked to be a low-inflammation diet. You may want to google “foods that cause bloating” so that you can see if any of your “regular foods” may need to be restricted just before and after your infusions. I’ve been amazed at some of the changes in my body and emotions that occur after modifying the types of food I take in. Take care and healing energy to you!
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Frank, any particular diet you follow? Or just general anti inflammatory foods?
I know I need to give up sugar, but it’s my weakness.
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Ive been on it for 2 years, initially I noticed bloating, and had the nurse only dilute in the larger ml bag of sodium chloride, larger than 50 ml, but i dont currently have one for exact ml, i think 75 or 100. It’s salt you know? She removes the amount needed for the vyvgart then that is all we use except the flush and only uses 5-7 ml of the 10 ml plunger for that. This cuts the sodium by more than half. Makes a huge difference for me. Talk to you neuro and see if okay.
Then be sure to hydrate really well 2 days b4 and a day after, water.
This made a big difference form me. Are your kidneys in good shape?
Nurse say anything?
Good luck hope you find a solution as it is the miracle drug for me.
I was just approved to go 4 weeks on then start again on the 2nd week after. I was crashing really bad and thinks this will really resolve that.
Are you certain it is not an anaphylactic reaction? No bumps, breathing g issues?
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Jennifer, the more I read this, the more I wonder anaphylactic shock. If each time you receive the infusion, it gets worse, that sounds like an allergic reaction. Have you discussed with neuro?
You any want to call Argenx direct if your dr. Has not solution.
It’s typical for allergic reactions to get worse with each exposure.
Hope not for your sake, fortunate, we have other new ones that work the same way.
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I did speak with neuro and she is taking me off of it. She is putting in for IVIG. Hopefully this works. The Vyvgart worked for sure but the last episode was to bad to keep going for sure.
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