I start IVIG

[Sunshine]

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.

The nurse explained that the first three doses were every two weeks to load it up in my system. And now it's like a maintenance. It doesn't quite make sense to me. Seeing immune doc tomorrow. If there is time, I will ask.

After I posted, I got very cold. Took my temperature and it was below 96. It took an hour to warm up. Back to normal now. Weird.

[Lazarus]

The nurse explained that the first three doses were every two weeks to load it up in my system. And now it's like a maintenance. It doesn't quite make sense to me. Seeing immune doc tomorrow. If there is time, I will ask.

After I posted, I got very cold. Took my temperature and it was below 96. It took an hour to warm up. Back to normal now. Weird.

Hi,
Remember I mentioned how it took us some variations before we got the right schedule? You need to keep the fuel tank filled to get the benefits. As each infusion wears off you need another infusion to keep the benefits level.

I have been happy to follow your experiences.
Continued good luck.

[Sunshine]

Today I woke up and my legs below my knees were significantly stronger. I notice it walking, sitting and driving the car. They no longer feel like they could cramp at any moment or give out on me. Yay!

Saw the immunologist today, when he uses IVIG for CVID he does periodic blood work to monitor kidneys and the such, and to get titers of the IgG levels. I wonder why the neuro did not mention that, he just said see you in six months.

So, I am to do the blood work day before the September infusion, he also reviewed what to watch for in terms of side effects.

Maybe the neuro thought the immune guy had those bases covered. But that makes no sense. The immune doc is not in the loop on the dosage prescribed over what period of time,

Hm. Maybe I will check in with Neuro 3 months post starting the IVIG.

[Virginia]

BBS, what wonderful news! Do you absolutely attribute the difference in your legs to the IVIG? If you have not felt this in a long time then I guess it must be. So awesome!

I wonder if the immunologist is just a more cautious Doctor than the Neuro. I like for Doctors to be cautious - and sooner rather than later. Glad he reviewed all possible side effects with you. Some time it is hard to take everything in on the first go around.

Just keep on going - great news!!!

[Sunshine]

Yes, I am positive. I have steadily worsened the past 24 months. Then the IVIG started and right away after first two infusions I could feel coldness again when walking on tile floor. And then suddenly I wake up morning after infusion and the legs are much better. Granted they have a long way to go, but this is amazing.

[agate]

BBS, that is wonderful!

I wonder if doing as much surfing as you're doing helps too though? It must take leg and arm strength, and you must be getting far more of a workout while surfing than you would just swimming--?

[stillstANNding]

Surfing makes her feel alive and normal. I need her to keep doing it so I can keep reading about it. ;-)

ANN

[SalpalSally]

I'm trying to talk DD Julie into IVIG instead of Aubagio!!!

[Sunshine]

Surfing def helps with my overall wellness and mental health. Doubt it helps or hurts the MS though.

Yes, it's more vigorous than swimming, especially if the waves are over 2' or it's windy. I have taken two friends out who are fitness trainers and marathon runners for a surfing first time. They said they've never felt so exhausted and beaten up as after their first surf lesson.

You are paddling a lot, pushing up to stand up, twisting your body, carrying a heavy long board, adenalized a lot, in bigger conditions you are really battling to get past the incoming whitewater from breaking waves. Some days you're constantly paddling so as not to be swept down the beach by lateral currents. After each ride you're paddling back out and on and on it goes.

One of my favorite scenes in the original Blue Crush movie with Kate Bosworth is when she takes the boyfriend out for his first time to bigger waves and how he gets wiped out just trying to paddle out against the powerful incoming broken wave.

Then there are the massive wipeouts where you get pushed down to the bottom of the ocean by a wave breaking on your head, tumble around in the spin cycle, emerge only to get pushed down two more times until the wave set is spent. Now that's a real beat down that does not happen in the pool! :)

[Sunshine]

I am happy to report that my affected arm is feeling significantly less heavy since last night.

[SalpalSally]

Go get em girl!!!

[Howie]

LOOK, she's doing a hand stand on her surf board as she rolls down that 10 foot wave!!!

[Lazarus]

I am so happy for you. My 8years with IVIg were just wonderful too.

Did I mention that this recent rituximab infusion was exactly 6months from the last one. My neuro had been in favor of stretching the time between infusions to 7 or 8 months. I pushed for the 6 month protocol and it seems to be making quite a difference. I am crawling around on my farm doing more work than ever.

The two of us are quite the workout team!

[Sunshine]

I know it's temporary. But it is just nice to get a reprieve from some of the symptoms even if it is temporary.

[Sunshine]

Is the Rituxan temporary too? If you stopped it would all the pre Rituxan symptoms return?