The good part is that IVIG does work for you and lasted 10 weeks! That is great!

My brother went through 1 year of chemo for leukemia and has been in remission for 5 years. He looks at it as a decent trade-off and believes he can do it again when the time comes he needs to. His strategy was to reward himself for the bother of the treatment with some kind of toy. He bought a personal music player, downloaded lots of music, and later a book reader as inexpensive "rewards" for his misery.

So how about you borrow, rent or buy a tablet computer, sign up for a free trial to Netflix, and use the time to catch up on old movies. Elinior said Nefflix was her reward for her recent surgery recovery.

Or maybe bring a guitar and learn some new chords; or if that is too big, try a harmonica. Should be able to disturb lots of other folks while getting some attention!

Last time I was in the hospital I did a contest: ( see http://riverroadrambler.blogspot.com/2012/06/packs.html )

During my wife's recent stay at the hospital, I had her check out an I-Pad from the patient library and we did the Netflix thing. Not too bad with some munchies--of course she was sick and I did the munchies ;-)

I used to support the renal dialysis area computers at Mayo--patients came in for 3 hours three days each week for a blood cleansing. Those folks really were inconvenienced--essentially their whole lives were dependent on staying near the machines. Some chose reading, some had regular visitors who came to talk; some liked to sleep, others watched the TV, some used their cell phones to do business or visit, and one was writing a book.

Good Luck!

Hi, terrier,
My plan is biweekly for 3months then monthly thereafter, but it's only one day for 3hours. Is a more frequent plan a possibility with fewer hours?
Be well,

I was doing 14 hours of IVIG every 4 weeks for almost a year. Felt lousy for a couple of days afterward and then good for the rest of the time. It does get old if you don't plan ahead with some type of time consuming device. My mg did progress even though the IVIG helped, so we added rituximab. It has done surprisingly well for me, and I haven't had an IVIG since early December, and I don't plan on having any more. If need be, I will ask to do rituximab again in 6 months or a year, rather than do the IVIG again monthly. Of course with MG, all of our "plans" can go out the window in a heartbeat, but we will see.

Hope you continue to do well with your treatments. 10 weeks of feeling good is very good!

I have only done one round of IVIG to "get me out of the woods".

Doing IVIG on a regular basis has to be trying for us. We must do what we feel is best and what makes us feel best though. Can't be messing around with this quirky disease.

When I got ivig I had started getting it every 3 weeks then for about 6 months I got it every 2 weeks. Luckily for me I had the treatment at home. It usually was about 10 hours. I slept most of the time. Now with getting plex I go from every 10 days to 2 weeks depending on how I am doing. Like now I am back to 10 days. Yes there are days I dread going but know if I don't I am worse off. We just have to keep on keeping on... Hugs Annette

I was diagnosed just over two years ago and sent home from the hospital with 100mg prednisone a day and Mestinon.

It took about a month to hit a crisis and I ended up back in the hospital getting IVIG as emergency treatment. They didn't want to continue me with IVIG after I stabilized, and two moinths later I was again in the hosptal, not able to swallow or chew, take a deep breath, hold up my head, or sometimes even walk. IVIG got me back up and going again, and after being sent home was now started on a regimen of IVIG 5 days a week for 1 week out of every 4. After a couple of months of struggling this was increadd to one week out of every 3, and now 2 years later I still get a 5 day IVIG treatment every third week. No matter how many times wehave tried to cut the dose or the frequency I always end up with problems. We added Imuran after one year and after six months I had bone marrow problems that caused anemia and we had to stop the Imuran. The best path now seemed to be to add Rituxan because I was sowly but steadily sliding backward on only the Prednisone, IVIG, and Mestinon. I am getting my 4th and final dose of the Rituxan today and the side effects have been pretty hard on me. I have had a constant migraine type headache since the first infusion, and my entire body aches like a bad case of the flu. My brain seems to be on standby because I can't concentrate much at all, and the nausea comes and goes frequently enough that my appetite is completely gone for the enire month. The worst thing, and it scares me because my 2 neurologosts have no answer for it, is that my myasthenia symptoms are worsening. I am short of breath often even at rest, and my neck muscles are completely gone and I cant hold up my head. I'm wearing the soft neck collar that I haven't needed for over 18 months, and my legs are noticeably weaker than usual. I'm hoping that this is just some sort of system shock, with some of my oldest MG symptoms now returning. I would welcome any comments from people who have taken the Rituxan about your side effects and your positive or negative results from the therapy. Right now I am afraid that I might have made a mistake in taking it.

My brother took Rituxan for cancer treatment 5 years ago along with some other chemo. The Rituxan was very effective and had few side effects compared to the other treatment. If his cancer comes back, his doctor thinks just the Rituxan will be needed.
Hope things get better for you soon. Good Luck.

I've been getting IVIG since December of 2011. Every 4 weeks for 2 days. I now get it at home. I buy fun lunchables for my lunch and have fun meals for supper so that I do not have to worry about cooking for us. I look forward to two days of rest when I do not have to feel guilty about sitting on my bum.

George,
That is so scary, we all need to have hope that the treatments will work; and for MG dissecting the effects of MG from the treatment effects of the poisons we have to take is not always easy. For acute rescue, there is still PLEX and there are other immunosuppressants. Although you have used what is usually reserved for last, doesn't mean one of the others might not work better with fewer side effects.

The other considerations are that the drugs (? steroid myopathy) might be causing you MG like problems or an occult infection masked by the immunosuppressants might be stirring things up, dental and urinary troubles are bad actors in that respect. Drugs you are taking for other problems may be a consideration as well.

These are all things you can discuss with your neurologists and your primary care physician. Do check the contraindicated drug lists (Links Group, myasthenia.org) to be sure you have not been treated with something known to cause problems with MG.

Here's to much better days ahead, Welcome to the group! b.

Next week I'll be getting my fourth IVIG treatment; I too receive mine at home, which is convenient even though sometimes I end up sitting around waiting for the nurse to show up, depending on whether her earlier appointments go as planned! But, then the Benedryl puts me to sleep an hour into the infusion and that makes the time pass quickly. And I keep a stack of magazines and books to read if I wake up. Or I do work. But I usually have the slightly odd and contradictory feeling during an infusion of being slightly bored, but also not alert enough to do much, or concentrate on anything for long.

16 hours is a really long time to sit still (even if it's divided over two days)! Thankfully mine takes only four hours each, two days.