IVIG Infusion
Hi,
I am new to MG and this Forum. First forum I ever joined. I have read many on-line of various subjects when I am looking for info.
I am trying to be an involved member, but the difficulty I see is that most of the questions people have or had have already been asked and answered. So, trying to find something new to ask or talk about can be challenging.
Next week I have an IVIG Infusion. Finally got approved because we wanted to know which Health Insurance Agency is going to pick what share of the costs for the Infusion treatment before I commit to saying, "yes, make an appointment". Expensive treatment if you had only Medicare and/or were paying cash. Health Insurance companies do not want to answer those type of questions of how much of the cost they are going to pick up.
Anyone have any experience with this treatment and if it helps or side effects ?
How long does the treatment last ?
Will I need more than one infusion ?
Thanks,
Ron @ flatouttrucking
The ivig infusions take 5 days, 3 hours a day and repeat every 4 weeks (on average). They definitely/drastically helped me, i was in a really bad place when I finally got my first infusion. could not speak or eat or even swallow liquids without choking. I have had 4 infusions over the past 4 months and have not been back to the bad symptoms since. I would say now the worst is my throat feels like i have a cold, where it is slightly uncomfortable to swallow, but i can pretty much eat normal. I'm still winded very easily, even with the IVIG, but that is minor compared to choking any time you try to swallow food, plus i can talk now... it got to a point pre-ivig where i could only talk for maybe a minute tops, and then just nothing, loose control of your tongue. i was chatting with my wife using my ipad at the dinner table, now i can speak normally again. I'm about to switch to vyvgart from ivig, just based on a specialist suggesting it could improve my symptoms further, so my next treatment will likely be vyvgart which is once a month for 1 hour vs 5 days a month for 3 hours. both treatments, for me are in home treatments, it is oddly that in home treatments are less money because of the fee's the treatment centers charge for usage of their facilities. Insurance, for me, insisted in home only.
thank you for taking the time to share your experience. I’m so glad the ivig infusions have been helpful! I hope the vyvgart provides even further symptom improvement. Please keep us updated on how you’re doing. Sending lots of positive vibes, Julie (team member)
I am taking vyvgart treatments since having problems taking high dose prednisone. Prednisone was driving me crazy, nightmares and panic attacks, and got dry eye after about 2 1/2 months. Had other problems, don't know if they were all related to treatment. Think my vyvgart will stop after the sellsept starts working, dr said it takes about 6 months to start working. It is a anti rejection drug, that suppresses the immune system so it stops the myasthenia from working on your muscles etc. I have not received a bill for any of my treatment so far, other than the deductible. Am on medicare with a supplement. The dry eye is severe and it is worse than the double vision. They call the treatments infusions, but they just give me a shot, which is under the skin and they slowly inject it in about 90 seconds. I also have to take steroids as I am allergic to the vyvgart. Happy days, more miserable steroids.They were giving me benedryl, but I asked the nurse last time to drop it, and have had no ill effects. benedryl did no good on it's own for the allergy, so did not know what good it did besides making my eyes even dryer. Seems every med causes dry eye, including aspirin. You are just lucky if you don't get it when you take a bunch of meds.
Hi Ron, I have had about 5 or 6 IVIG treatments with some in hospitals and some in outpatient clinics. I have a Medicare Advantage plan and was not charged anything for the outpatient treatments. The course is 5 days using IV and takes about two to three hours each time. It does work for most people and myself but my first experience in the hospital I was in bad shape (very weak and hard to breath) so I ended up needing Plasma Aspirases too (spelling?). If you have an Advantage or supplement plan for Medicare you should have little or no cost. I don't know about regular insurance because plans vary but if they have a maximum out of pocket limit then it shouldn't go over that for the year. Good luck.
