IVIG

[sw8689]

Hi everyone, is anyone in Canada having IVIG done for their MS? I'm in need of some information. I know health canada has guidelines for its use and it's approved for use with rrms.

Any information would be helpful, and those who are having done in the US or other countries would you be so kind as to explain your protocol.

Tank you, I appreciate any information I can get.

[sgrammied]

I don't quite know what you mean by protocol. But for me I can not take any of the other Meds for MS.

I can tell you that IViG has helped me a lot. I call it my juice. I get it every 2 weeks. I have been getting it for the last 5 years. It helps me with my balance and walking. It also gives me energy. I do have to be careful because with the added energy I tend to overdo it.

I can always tell when it is time to get some more I am taking naps more often and longer.

I hope it does the same for you as it does for me. Good Luck
Sandy

[sw8689]

Thank you so much for your reply Sandy, my name is Sandra! To funny..

What I mean is how often, how much, doe you have rrms? What clinic does it etc.

I'm going to have to work hard to get it, because when I asked about it, the relapse nurse point blank said, we don't do that here it doesn't work..so I will likely be scheduled for chemo again. I have already been through all of the other meds, and can't take them any more. Chemo worked extraordinarily well for me. But, it also made me very sick. No lesions for seven years until a car accident 18 months ago, and I have had relapses ever since..

I think ivig is a good option for me, and it sure sounds like its been good for you!

So here's to your juice!

[sgrammied]

Hi Sandra
I have rrms. I get my Ivs every 2 weeks, the amount I get is 60 grams (I think that is what I read on the rx). I now get my infusions at home. A nurse comes out to my house and gives it to me. I am infused over a 3 to 3 1/2 hour time frame. I use to go to an infusion center connected to a hospital. But complications arose there.

See I had my iv yesterday and went and di my grocery shopping today. I am resting before I put the stuff for the pantry away.

A relapse nurse? I have never heard of one. Have you talked to your Neuro about the IViG?

For some insurances it can take 2 to 3 months for approval. So talk to your Neuro.

Good Luck
Sandy

[hunterd]

I moved your thread because it will get more response here.

I received IVIG a year ago. I am in the USA, so I do not understand your health care system. When I received it, I went to a local infusion center that is affiliated with the hospital and got it there. It is administered through an IV ( here anyway). It took about three hours ( the rate of administration depends on your weight). People respond to it differently, for me, it boosted my energy levels ( which was a very welcome effect).

[sw8689]

I see my nuero this coming week, so hopefully I will get somewhere. Usually our healthcare system pays for it, but, if my private insurer will, then I'm sure there will be an approval process.

[sw8689]

Ga Dancer, it's working so well for you, I'm so glad to hear it! I sure hope they consider it for me at my app this week.

[golfore]

I start 5days of IVIG infusions tomorrow throu Friday. My exerbation started early December. It has been relentless.

I was fully mobile and have now very limited use of everything . My arms, legs, my fingers are unusable.

The Neuro has been puzzled as my MRI's fail to show any new activity. He had EMG tests done and based on those results along with the strange symptoms has me scheduled for IVIG.

I can't find much negative info and am optimistic about getting some help.

I have had a slow steady progression with the same/equal problems in both legs, feet, hands, arms. Never anything sudden, just an almost steady drip,drip,drip,,, of progression.

Hope I didn't ramble. I will give update.

[sw8689]

Thanks for posting, I am looking forward to an update. Are you in Canada or the us? I'm not having having treatment of any kind until after my next MRI, this August. We are doing the wait and see hoping things will settle down.

[golfore]

2 treatments down,,, 3 to go..

I am in the USA..

Waiting to do my first backflip. Stay tuned..

[golfore]

I have completed my 5 infusions of IVIG. I am not feeling much different.

I have read everything I can find about it. I will wait patiently? for something, anything to change.

Effects can happen within days to weeks. I also have spinal stenosis and see a neuro surgeon a week from Wednesday.

[sw8689]

Thank you for continuing to post your experience, it's important for us to hear. I sure hope you see a difference soon.

I started a new treatment from an ND, I should do a post on it, glutathione shots and its really helping. For now at least!

[MSLorrie]

I had five IVIG infusions and they really helped me.

At the time I was misdiagnosed as having GBS instead of MS because my presentation was on both sides and severe, and was put on IVIG. It made me recovery quickly and kept me free of relapses for about six months.

I wish you all the best!

I've just been diagnosed (literally yesterday) with RRMS and I loved IVIG.