At the end of December, I got very weak. My neurologist and I decided I should have a course of IVIg the first week of January, and that I would see him in mid-February. At that time, if my symptoms were returning, we would schedule a one-day booster infusion of IVIg. The idea was that if we treated the symptoms when they first started coming back, instead of waiting until I was really weak, that one day would be enough. I could then have one day every six weeks and stay strong.

Unfortunately, the January course of IVIg didn't give me six weeks of strength like the last one did. The reason is probably that I only had three days, instead of five like last time. So this time I was strong for about two weeks, and then got weak again (though not as weak as I was before the infusions).

So, when I see the doctor soon, I will discuss with him what to do now. I will ask him what he thinks I should do, of course, but he's open to suggestions. Here are some ideas:

--I could wait until I get really weak again and have a five-day course of IVIg, in the hopes that it will make me strong for six weeks again, and then I could get a one-day booster when symptoms start to return;

--I could ask for a full five-day course right away, even though I'm not weak enough according to his usual standards to justify it, in the hopes that this would stabilize me, and then I could get a one-day booster in six weeks;

--I could ask for a three-day course right away, in the hopes that since I'm only moderately weak, it would be enough this time.

Or? Does anyone else have any ideas for strategies I might suggest we try? I've been on Imuran for about ten months, and my doctor still thinks that it's going to start working any day now, so he tends to think of IVIg in terms of tiding me over until the Imuran kicks in. I'm not ruling that out, but I'm less optimistic.

Thanks.

Abby

Or you could ask him to begin maintenance doses of one day every 2-3 weeks. Easier on your body, more predictable.

My neurologist used IVIG in the same manner when I was on Imuran. I have read that the IVIG treatments are only good for maybe four weeks. That appeared to apply in my case. I have not heard of a one-day booster treatment but I am currently going through and eight course treatment which I had never heard of. If you keep a journal go back and look at how long after your IVIG that you started getting week. And I would say that would be the timeframe that you would need another treatment.

To be honest I would go by my gut feeling of what I needed and tell that to the Dr. and see what he says. Only you know how you feel at certain periods of time and what helps and what doesn't.
Mike

I agree with Mike to go with your gut feeling on what you think might help. Everyone is so different with how they respond to treatment. You know how you're feeling all of the time. Your doctor only sees you for a brief visit. I still keep a log of how I'm feeling; otherwise I forget the specifics when I see the neurologist and my tendency is to downplay things.

I had 2 days of IVIG several months ago; arm and leg weakness responded extremely well so my neurologist gave me 2 more days the next week thinking that would help more with the double vision. Nope--didn't! So now it has been 3 months and I'm starting to feel the generalized weakness daily. I'm on prednisone now, but that hasn't seemed to help. Maybe I'm due for another IVIG. I just wish that they could find something to help the double vision!

I hope you have a good appointment and can jointly figure something out to help you.
Cate

Abby, If you don't have an issue with needles, then maybe you can get permission to do Hizentra (the sub-Q version of IVIG) at home as a maintenance dose in between regular IVIG.

You know how drug effects can wear off with repeated use? Kind of like how drug "users" need more and more to get their "fix?" Sorry, it's not really fair to compare a needed drug to a "craved" one. Maybe your body is getting used to the effects and needs more. Just a thought.

I hope you'll let him know that you have concerns in general about not having the "proof" you really want of this disease. Be aware, however, that even Mayo says that they can't see the NMJ well in adults. Allegedly. Though there are numerous articles out there on seeing it in adults.

There is no easy algorithm for all this. What is good for you right now may not work in the summer. It's the "art form" of treatment, where you have to stay in touch with your doctor or have that "what if" plan, like you are trying to do.

I hope you can figure out what works well for you.

Annie

Thanks, Annie. The Hizentra is a good idea. I've heard of it, but I hadn't thought of it as a possibility. If I do end up trying the immunoglobulin regularly, that would make sense.

I am going to give the Imuran more time to work before I ask to have my diagnosis revisited. In any case, I'm pretty convinced the IVIg worked for me at least once, and that's evidence that my disease is autoimmune. Even if it's not MG, it might still respond to the same treatments.

Abby

Hey Abby!
I'm wondering if you know how much you get total during your treatments? I get 65g a day for two days, so 130g. If we were going to change it up, my doc would do the same amount 130g, but split it over 5 days instead to lessen the side effects. So I'm wondering how much your getting each day. If it's the same amount on your 3day infusion each day as on your 5day. Example 5day= 25g total of 125 over 5 days. But on your 3 day your still only getting 25g total of 75g, you wouldn't have as much response from it. I think the trick is to give you the full therapeutic dose on a regular schedule.
My dose starts wearing off around 3 weeks and by 6 it's gone. So by doing it every 4 we are keeping it going, and very very slowly I'm seeing slight improvement from the last time. If I miss my dose or wait for 6 weeks I start backsliding very quickly and it's like starting over again. Hope you are feeling better and strong!
Jess

I go for IVIG again on the 14 it's been 3weeks since my last infusions and I can totally feel myself getting weaker and I have upped my dose of Mestinon to compensate until then! I'm good as long as I don't do much! But as soon as I try to go shopping or play with the kids too much! I get very weak.

Hi, Jess. I'm a little confused about my IVIg dose. I know that I receive 300 ml. a day. I'm not sure how many grams that is. The first two times, I had this dose for five days. The third time I had the same daily dose but only for three days. My doctor brought up the possibility of infusing the five-day dose over three days, but we decided not to since I'm prone to migraines.

Abby

Abby, I am on IVIG and into my 6th year. I am wondering what your dosage is. I can't take the imuran so the IVIG is it til something else comes up that is feasible.

I am wondering also if your doc could have you get the infusions every 3 weeks to 4 weeks. I also wonder if he is hesitating to put you on IVIG more often than every 6 weeks as he feels he won't be able to tell when the imuran kicks in. ??

I don't know if you have done any research on the imuran, but from what I have read most people are having some response to it by 10 months. Also, I would think that if the doc would increase your IVIG dosage you might be able to make it the 4 weeks.

I get 80 grams of privigen and usually I can pretty much make it until a couple of days prior to my next infusion. This month I have infusion next Monday but I started having weakness last week. I am not surprised though as my hubby has been having health issues again/yet and the stress knocks the starch out of me.

Maybe it is time to go off the imuran---or----you could make a deal with your neuro that if you show no improvement in such and such a time you will stop it and go on cellcept which is often used. Anyway, just a few thoughts from an old lady. Good luck and let us know how you are getting along. gto