I start IVIG

[SalpalSally]

I think I'd even try Tysabri. I'm that desperate!

[Virginia]

Linda, how long can you take rituxin? Also, what does your Neuro feel is long term dangers?

[SalpalSally]

I need to talk to a Neuro. Wonder if they have one here?

[SuzE-Q]

They probably wouldn't have a MS specialist there, Sally which you likely need if you want to explore treatment options. Unless Cat was able to get her treatment through her pcp so maybe there's a few knowledgeable enough to rx them?

But I think it's good to see someone who has experience and a good working knowledge of which of these new meds tends to work better outside of clinical studies and generally in the MS population.

But if you want to open up your options, I do think it's important to perhaps suggest that you've had a few relapses in recent years, even as the precipitating event to your fall that ultimately landed you in there. Doctors seem willing to label patients as RRMS to allow them to try the meds, but if you don't have a working relationship with a neuro that you see, you may need to "help" them along a bit to give you a relapsing label in order to qualify. Some of these meds, as Lazarus mentioned of her experience, often appear to IMPROVE a patient, not just prevent future progression.

[SuzE-Q]

I think I'd even try Tysabri. I'm that desperate!

This just popped into my inbox, it sounds like it (Tecfidera) may be available for other than RRMS? I think this is what Cat was or is still on:

Ther Adv Neurol Disord.

2016 Jul;9(4):344-5. doi: 10.1177/1756285616640396. Epub

2016 Apr 6.

Dimethyl fumarate may still have a role in progressive multiple sclerosis.

Plantone D1, De Angelis F2, Doshi A2, Chataway J2.

1NMR Research Unit, Queen Square MS Centre, UCL Institute of Neurology, London WC1E 6BT, UK.
2Queen Square Multiple Sclerosis Centre, Department of Neuroinflammation, University College London (UCL), London, UK.

Here's the abstract on it (unable to copy and paste it here):

Only registered and activated users can see links., Click Here To Register...

Here's an earlier full publication on the same subject of its potential application for progressive MS:

Only registered and activated users can see links., Click Here To Register...

[Sunshine]

Tomorrow is my third infusion.

[Virginia]

BBS, hope it goes as well as the first two.

[agate]

Yes, BBS. Good luck to you.

It's a bit unusual when somebody has found something that seems to work. We can rejoice every time this happens and cheer that person on.

[Virginia]

Right now I am thinking I would like to try IVIG in addition to the Rebif I am on. IVIg is fairly benign as far as any side effects, but I might gain more energy which would give me more mobility and help me to feel better, maybe.

The problem is I don't think my Doctor would go for me taking two and I know my insurance would not want to pay for both so that is a problem.

[stillstANNding]

Virginia, why stay on Rebif if you are going to go on IVIF?

ANN

[Virginia]

Ann, Rebif is long term therapy. The way I read it and understand it IVIg is just a help with problems for just a couple of weeks, but does not slow the progression past this time. This is a simple way of how I am understanding it and could be wrong.

[stillstANNding]

Virginia, you don't mean that Rebif can't be stopped, do you? I know you have the problem of nothing to switch to w/o side effects you'd rather not risk.

Didn't Linda say she was on IVIG for 8 years?

Hoping for something non toxic for all of us.
ANN

[Sunshine]

The infusion went very well with no side effects. Now I will go once a month.

My reading up of it on IVIG says it does do remylenating! And it does help a few other neurological conditions. The reading material is quite complex. It's not just the obvious of infusing antibodies will help fight infection.

The past two times I felt effects after 48-72 hours.

So far the biggest benefit is how much better I can breathe! It's wonderful. The lungs are not all better but way, way better.

[Virginia]

BBS, thanks for the update. No side effects is great. Did they up the grams in order for you to go once a month or are you just reacting well enough to do that?

Ann, Rebif can definitely be stopped at any time. It is just that in my thinking the two do very different things and I want both. Does that make me greedy? Or is anxious a better word? I am not sure, but I think Linda took one of the DMDs at same time as IVIg. I know there was someone who did.

[Lazarus]

Right now I am thinking I would like to try IVIG in addition to the Rebif I am on. IVIg is fairly benign as far as any side effects, but I might gain more energy which would give me more mobility and help me to feel better, maybe.

The problem is I don't think my Doctor would go for me taking two and I know my insurance would not want to pay for both so that is a problem.

Hello,
I stayed on Copaxone while I did IVIG.