Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I am going to see my neuro in a couple of days and I am very nervous. Last time I saw him he said that if I don't improve in the next month we might need to start thinking about IVIG. I dont really know what to expect with the IVIG and I was hoping you guys could help me with some questions. Does it make you feel sick or is it painful? Will I have to miss work? Does it work well for you guys? Any input would be helpful. I can be a bit stubborn about this stuff and am trying to change my ways. I fought the steroids for a while and got myself in the ER. I 'll admit that I'm a chicken about this stuff. :)
Your neuro should discuss all the potential complications, but for me the benefits have been well worth the risk. When I say subpar performance, I am referring to the best days of the week prior to the infusion. I usually am not at my best a couple of days before either, but I get my infusions once a month. I am sure others will chime in with their experiences. Hydrate, hydrate, hydrate was the advice I got and so far so good! b.
I was having problems with a rash, breaking out on my arms and legs, so I asked for my infusion-rate to be lowered. From a top-end rate of 200 ml/hour, to a top-end rate of 160 ml/hour. (My top-end rate kicks in, about an hour into the infusion.)
It turns out: the rash was not due to IVIG, but another infusion called Rituxan. But we have kept my IVIG top-end rate at 160 ml/hour.
I have not needed pre-medication, or post-medication (lucky again). I do drink a couple glasses of water, the night before. And then a couple more glasses of water, ending about 2 hours before the start of infusion. This helps to ''plump up'' the blood vessels, which helps the IV-Nurses with the infusion needle. It also helps the blood vessels, to keep your hands and arms warm, prior to infusion (not hot, just warm).
Have faith in the IV-Therapy Nurses. (Always being your own boss, at the same time.) I've had about 25 IVIGs so far, and the IV-Nurses have always gotten the IV-needle in, the first time, every time, with just a little pinch.
My infusion takes about 5 and 1/2 hrs (it all depends on your height and body weight.) 6-hours total, when you include the preliminary work and the line-purge at the end with saline solution.
I was told at my IVIG today, that next Tuesday: IVIG infusions will be done with Octagam - and not Privigen.
Octagam requires more volume of product than Privigen. I'm not sure what this means, re: infusion rates. But I'll be talking about this, with the IV-Staff, on Wednesday.
Cost: IVIG is a VERY pricey therapy. The drug company, the hospital, my doctor, the IV-Therapy Staff? They were all uncooperative and unresponsive to my repeated questions about cost and billing.
So you develop a strategy, for dealing with this. I would be glad to share my experience with you, re: IVIG cost and billings. At this point, I would prefer to do this by messages, and not in a general posting.
ALSO: before you receive IVIG? Your doctor may have to present your case - to a panel of doctors, who then makes a recommendation - on whether to approve the IVIG or not. This recommendation is then used by insurers, as to whether or not - they will pay.
At first, don't call your your insurer, about this. Instead, talk frankly with your doctor about the situation of cost (and all medical aspects that you have questions about).
Some insurers are more or less - required to cover IVIG costs, if the panel of doctors recommends treatment. I'm not sure - if this is true for all insurers.
My primary-insurer is Medicare, and they cover 90-percent of the IVIG cost, based upon the local panel's recommendation.
The other 10-percent is my responsibility. And just that 10-percent is substantial.
And I say ''So what!''
After considerable aggravation, about the cost of IVIG? I'm at peace with it all. But the path to this peace, can be obscure at times.
Be assured - the path is there.
- Ross
Drink 8 glasses of water a day for days before and after at a minimum. My dose is 250ml, no higher than a 120 rate over 2 1/2 hours. Everyone can be different as you see above. I only take one Advil prior. Results vary. Others used to write about sometimes it working, or not. It's true. The day of, I'm really sleepy. I've been able to "work" the next day, but I only drive 15 min's and my husband has been driving. This past time was the best. I felt better after 2 days and had 6 wonderful, normal days. I've needed much less Mestinon.
Once the needle is in, you're good to go, and it's so tiny, you barely feel it.
Oh, and it enables me to chew and swallow-pretty important. I rejected prednisone and do not take any other meds other than cellcept, which I don't like. I'm pretty much of a naturalist, but you've got to do what you need to do to live, thrive and stay out of the ER. I wish I had done it much sooner rather than slogging through.
Be well,.
Be well,
Be well,
My experience has been that I need to be thoroughly hydrated before, during and after the treatment... and that it needs to take a good 5 hours for my dose. My nurse tried to speed it up one night in order to get home at a reasonable hour, and that's when I got horrible headaches and a high fever.
I always pop a Bendryl before the procedure, which results in me sleeping through about half of it - it makes it go by fast!
Also, there are several companies who make this blood product. I didn't have as good a reaction to Privigen as Ross, so I'm on Gammagard. Be careful, as your insurance company may try to steer you towards whatever is cheapest for them - mine did - but a doctor's note should clear that up.
Good luck!