Hi, I saw my neuro yesterday, and since the CycloSporine is contributing to my kidney damage, i have to wean off of it, and will be starting IVIG's
I'm curious about the time of doing it.
How long is it usually, how many times per one treatment does one have to go in to have it done...etc.
What side effects did you experience.
My neuro told me the most people have complained to him was headaches, and with me, he can't rule out an alergic reaction, but we must try it, as we're running out of treatment my body will tolerate.
He gave me a choice, either Plasma, or IVIG, he said, he'd choose IVIG, and since I completely trust his judgements, I'm going with the IVIG. And then we'll wean off of Cyclosporine, and if it really does well in me, I'll be able to actually wean off of Prednisone. 5 years is a long time to be on it. So tired of my cheeks.
My legs just about gave out in front of him. He said, I'm getting pretty weak, and seemed very worried. I'm so glad my butt wasn't slapped in the hospital.
I really appreciate anything you're willing to share on your experiences with Ivig's . Don't want to go in blindsighted.
Love Lizzie

Hi Lizzie,

Sorry I can't help you with this one...I had plasmapheresis. But I wanted to reply to tell you I'm glad he's going to try something new that sure has helped a lot of others. Glad to hear about the meds too. I've been keeping you in my prayers. Good luck & take care.

Pat

I get IVIG, takes me 4 hours a bag, my doctor does a real slow drip, it helps to orevent those head aches, & side effects. So get comfy ! I am one of the unlucky ones that am allergic, I have had 2 reactions to treatment, I have high does pred. now before IVIG, that keeps me from rejectibg the antibodies I am allergic to. The reaction I get starts with head ache fever right away, fever starts at 101, builds to 106, & stays that way until they have given me pred. to stop it, I also get hives all over my body & ache like the flu.
Most people do fine, & feel great ! They take your temp thoughout the proceedure, so if you start running one that is a warning sign. They will know what to do though, & it is something that can be controlled.
Mary

Oh Lizzie! I am so sorry to hear that you are havig such a tough time......you have enough on your plate without all this new crap to deal with !

I get IV IG monthly in order to reduce the need for my roids. I would advise a PICC line - the needle for the IV IG is BIG, b/c the liquid is pretty thick and gooey, plus veines seem to blow easier since we are on all the meds.....

Once the line is inserted (they find the best vein and "feed" a line about 30 cm. to the area above your heart) they add all of the bandaging and start the process.

I have always had good experences with IV IG. In fact, they USED to run my meds @ 360 mL an hour, but have slowed it waaaaay down to prevent kidney damage. Wear comfy clothes and plan on spending most of the day @ the hospital. They will check your blood pressure and temp every 15 min and keep bumping up the speed of the plasma until they reach the "max" limit.
If you respond well, you should feel it within a few days! I felt so great after one treatment tht I was able to decorate my entire home for our annual xmas party! It was AWESOME!

The worst part for ME was the placement of the line! As you know, I don't like needles @ all, so that wasn't any fun, but I do love IV IG! I call it my "liquid gold" or "go-go" juice!

I am given 500 mL for 5 days in a row. It takes me about 5-6 hours now. I take my comp and work while I am having it done......

Do you have anyone to take you? You MAY feel a little weaker at first, but I bet you are going to LOVE it!

Big, big hugs!
Erin

Thank all so much.
So, it's just a one day thing, every so many weeks?
My neuro said we won't know how often until after the IVIG, and then when I start feeling weak again, is the time to do it again.
I just didn't want it to be done over several days if I could avoid it.
Maybe I was thinking of Plasma, as that's the other option.
Pat, ((((hugs)))) and More (((((hugs)))))...thank you
Mary, I'm so hoping that I'm not going to have any allergic reactions. He said with the way my body is, he'll make certain that they'll watch carefully. Especially since it wasn't that long ago being on a vent for me.
Erin, thank you so much, And wow, sure hope I get that much juice, as my attic could use a real good cleaning!! Sooooo, I was wondering, when do you have to have your's again, and um...a...hmmmm, where do you live... lolol
I just want to feel good again. But having serious issues making me so ill.
thank you all for your input, I really do appreciate it.
Love Lizzie

They usually do a three to five day course, depending on your dosage. Hope you get a great boost from it ! Good Luck !
Mary

It is done in 3-5 day courses - mine are 5 days.......so my week is shot but boy is it worth it!


I DO have a friend that only gets 1 day treatments, but I don't think hers are very effective.....You don't want to go through it do not truly "FEEL" the effects!

THe plamsa exchange is also very effective,,,though a bit more invasive - OK a LOT more invasive, but it does work!

I've had the exchange for 5 days followed by 4 days of IV IG several
months ago - after that I just felt tired, but Dr. I was worried about me having another crisis.......Did I mention how much I love that man?

I go in monthly for my tune up - we are trying to stabilize me for a while.......I still have my PICC line in and have to go in weekly to have it flushed and cleaned.......I don't like having a PICC line but my veins are shot! Darn pred!

I bet you are going to LOVE IV IG!!!!!!

When do you go in?

Big hugs!
Erin

just curious what the criteria is for mestinon,steroids,plasma,ivig are? how run down do you have to be to receive them? i had reaction to reg mestinon even though the relief was pretty good double visione gone!!!! now changed to timed release 1/2 bid if ok increase to 1/2 tid then check with dr.

By the time I was dx'ed I was so weak that I couldn't even chew and swallow ice! I was started on Mest, but my neuro did not want to start the pred - he was worried I would get weaker - but after my crisis I was admitted to the ICU for 8 days, during which I received all of the above - IV IG in one arm, pred and mest every day. I started @ 10 mgs of pred, doubled the next day, until I was up to 80 mgs - talk about manic!

If you are still feeling weak you really need to tell your neuro - (s)he may want to add pred to your meds. The only problem is that you may initially become WEAKER when you start so you have to be really really careful!

Hope this helps a bit!

Big hugs!
ERin

Oh, I too hope I have no problems with the IVIG.
I was told, that ,what they try to do is, for the first time, give it over a 3 to 5 day period, and it can be like every other day, just to be careful. And then, every so many weeks, or even months for a refill...kind of thing.
I can handle that.
For me, the reason I'm starting IVIG is because all other meds are causing more kidney damage, and I am pretty weak.

Mestinon, really is a good bandaid for MG, but a true treatment is an Immunno suppressant. I never got any relief from double vision with Mestinon. Prednisone helped it.

I'm not sure what the answer is, as far as what meds are required in order to get which treatment.
This is the way I looked at it. I wanted to try the least of all the evils shall we say, and go from there. Just Mestinon would never work for me. For many reasons. One, it causes me terrible diarrhea, and then it never seemed strong enough for me.
Prednisone was the first med given to me, before I even left the hospital. I was one that felt stronger with in a week to two weeks. I was in love , but then, other medical problems popped up from it. So everything has it's problems. It's just important to find the right mix of meds for your body, and your weakness.
Hope this helps some
Love Lizzie