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IVIG
For those of you that have been on monthly IVIGs, have any stopped this treatment and how did you do it?
I have been on monthly maintenance IVIGs since 2019 when diagnosed.
I have pushed the last two treatments to 5 week intervals and have just moved to 6 weeks for my last treatment.
Your thoughts are appreciated.
Scott
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7 Replies
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I was on IVIG for four months and feeling well.
The fourth month, four of my labs came back lower than they had been, but still in the normal range. My blood pressure was all over the chart. The pharmacy who was sending my supplies, recommended I stop the IVIG and my neurologist agreed.
I have not felt as well since, but when I discussed going back on the IVIG with my neurologist, he felt it was not a good idea.
I deal with a lot of fatigue. Most days I have the greatest amount of energy first thing in the morning.
Best of luck to you.
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I was on IVIG for just over a year, two days a month, back-to-back. Initially, all was great and I noticed marked improvement; I began to feel normal again. I was also on a medium to low dose of prednisone, as well as taking Mestinon as needed.
After about month 13 or 14, I was no longer noticing improvement after my infusions. After talking with my neurologist, we decided to give Vyvgart a try. He also put me on Imuran at the same time. Now, instead of planning my life around monthly infusions, I can go 10-12 weeks between cycles (once a week for 4 weeks). This has been a blessing for me — eating, chewing, talking, and singing are all back to normal. I do seem to still experience fatigue, but, then again, this has been a hot summer — and you know how we MGers love the heat 😉
Vyvgart is expensive, but for me, it’s worth it…and thank the Lord for my health plan’s $2k annual ceiling. Many of you may have plans that would cover it entirely.
Back to your question, David — If the IVIG is still working for you, that’s awesome. Either type of infusion forces you to plan ahead regarding things like vacation travel. Like I mentioned, when it worked for me, it was great. It was also only about a 5th of the cost of the Vyvgart. I hope you can stay with it for as long as possible. I’m crossing my fingers that the Vyvgart doesn’t begin to lose it’s effectiveness for me like the IVIG did.
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Did it help with double vision?
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I began IVIG at 6 week intervals, then pushed it to 8 week and then 12 week intervals before suspending altogether; went into crisis 2 years later. So I’m back to 12 week ivig intervals and doing better.
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I stopped IVIG and went to Solaris. Then started about 6 months ago on Vyvgart. Inconvenience of IVIG was main reason went off although Vyvgart takes a lot of time. Four weeks on and four weeks off.
Robert
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I started IVIG in 1996 monthly until 2009 when I went to IgG subcutaneous. I now inject Hizentra weekly. It’s been a game changer. I infuse myself at home, can even travel with it and it only takes about 2 and a half hours each week. I do it in the evening watching TV. Without the IgG infusions, I’m much weaker when I tried to get off IVIG before switching to subcutaneous injections, I felt very weak and ill. So it’s been 15 years now on sub cue and I like it.
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I started IVIG after being diagnosed in 2019- I made good progress after the meds were corrected. I then transitioned to Vyvgart . I initially got good results but over time the improvements plateaued. currently on a generic medication where i am months between infusions. Keep talking with your Neuro and find the right meds for you.
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