IVIG

[Tulip77]

Dr said there is a still a cancer risk with kesimpta as it is essentially the same thing as ocrevas. She suggested IVIG. Does anyone have any experience with it?

[palomino27]

I did IVIG for 9 months. 5 month once a week even. I got it finally approved for my other Autoimmune stuff like POTS, Dysautonomia and Small Nerve Fiber nueropathy. It did not work for me but for some it's almost a miracle worker. This is not a DMT. If it's working you should actually feel better. If you can get it approved for MS I'd atleast try it. It's horribly expensive. Hospital charged the insurance $256k for my 9 months so double and trip check it's pre-authorized. There is no copay assistance because it's considered experimental for MS and not FDA approved. I ended up paying $13.6k out of pocket for it. I know of one person who was in an MS trial for it years ago and started walking again for a while. But then it stopped working eventually. I guess that trial didn't even come close to FDA approval. I would try it but stop it quickly if it doesn't work....

[Tulip77 in reply to palomino27]

When the drs office calls to set things up I am going to be asking a lot of questions about the costs.

[palomino27 in reply to Tulip77]

Ivig is basically whatever your health insurance out-of-pocket maximum is for the year if you do it long term.

I faintly remember it was about $750 a dose with insurance adjustments until the out of pocket maximum. But the cost is always increasing. I believe it is being used a lot for people who have transplants and then organ rejection issues. There is something else it's used for a lot to but I cannot remember.

It is dosed by height and weight. I'm 6'6" so I needed a fairly large dose each time. Go slow on the infusion rate. Reactions are possible. They made me take Benadryl and Tylenol each infusion. It was not an option the first few times.

One dose of Ivig is from the blood of approximately 1,000 blood donors. Why it's so expensive and always a shortage. I did Gammagard brand Ivig. I then also tried in home "SubQ IG" which for many is easier to tolerate. For me, for some reason, it was actually worse.

[Tulip77 in reply to palomino27]

Thank you so much for the information

[kdali]

Aww, I’m sorry you didn’t know that it was similar to Ocrveus and got your hopes up 😞 Kesimpta is the same as Azerra, used for leukemia, but it is a small dose. I have not had IVIG, but I hope if you go for it that you have great results and let us know about it 🙏

[Tulip77 in reply to kdali]

I knew it was almost the same but there were not any cancers in the trials so I was encouraged by that. Guess it wasn’t meant to be.

[kdali in reply to Tulip77]

I see, ty for sharing that your MD still says no. That’s something that gives me a pause for sure. I have had a tumor excision and the surgical site is looking a bit weird and gets itchy. I was going to ignore this for a while longer but I think I’ll go see about it! 🙏 When I looked up Kesimpta, I was looking for PML with the IV people and didn’t notice there was no cancer in the trials.

[RoyceNewton]

IVIG, one of the BEST things that you will ever do for yourself. She who must be obeyed had it several years ago, now drives a car cuts and yells at me with no problem. I am not sure how she paid for it.

[Goldilockssearching]

Never heard of it 🤷‍♀️ Is it for symptom management? Delayed progression? Inflammation?

Why might someone choose this?

[Tulip77 in reply to Goldilockssearching]

I got this off the internet:

IVIG stands for intravenous immune globulin and is made by combining antibodies that have been removed from the blood of multiple human donors. IVIG works to help control the immune system of people with a variety of autoimmune diseases. It is FDA-approved for some neurologic disorders including Guillain-Barre syndrome and chronic inflammatory demyelinating polyradiculopathy (CIDP). IVIG is also sometimes used “off label” for other conditions, including MS.

[Kitsey]

Have you considered Rituxan? If you have Medicare, it’s covered. Genentech had a program to assist with cost although I don’t know if it’s still available since Ocrevus was approved. I wish you the best to find a helpful medication.