Hi. I've been on Imuran and IVIG for just about a year. I do my IVIG at home. My Nero doc just told me to plan on being on the IVIG long term. It has made alot of difference. Keep track of how you are feeling from the first week till your next treatment. This will help your doc determine how often you need them. I started at every 4 wks then had to go to every 3 wks but i only do one day at a time
Good luck

Thanks Whales86 for the reply.

I am obviously new to this next step. Have you been weaned off of the other meds like Mestinon and prednisone.?

I know the first time needs to be done over a 3 day period in the hospital. Do they normally just inject a certain amount each day.?

Are the doses that you take at home as much quantity wise as what was given during your first time at the hospital?

I know that I need to contact my insurance to see if they will pay for future treatments at home verses a facility. I'm still working but I turn 66 next month and hope to retire someday in the nearer future. I think I remember seeing a topic where Medicare would not pay for the home IVIG treatments.

Thanks
Steelplayer

It's hard to say how long you will need to be on IVIG. I've had IVIG for 1.5 years now, once a month. My symptoms have changed over the 3.5 years that I have been DX with MG.

Triggers for MG to flare are: stress, weather conditions, infection, poor diet, and poor rest, just to name a few.

Imuran helped me for awhile, but IVIG was the "miracle" treatment for me. I am still on Imuran, Prednisone and now having to take mestinon again due to symptoms returning.

The thing to remember is that we are all different. That's why we are called "snowflakes" :-) We all have different symptoms, and respond differently to treatments. It's always good to ask, like you did, about something you want to know, because I have learned more by asking questions here on this forum than anywhere else.

This is what I was encouraged to do to prepare for IVIG, and I have not had any reactions, or severe headache (knock on wood).
1. Drink extra water for 2 days before and 2 days after
2. Pretreat with Benadryl (they give this to me via my port)
3. I take 2 Tylenol before I leave for my IVIG appointment.
4. Eat healthy, before, during and after- clean foods (especially protein), see eat to beat myasthenia gravis.com for good food ideas, and lots to think about. I do not think that we are "healed"
by what we eat, but I do know that when I eat the foods on that list that I feel a whole lot better.

Best Wishes!! :-)

Steeleplayer,

As Barbel said, MG manifests itself differently for each of us, but it does seem that most people in the forum think getting IVIG every 3-4 weeks is the norm. I started in the hospital with 3 days of treatments and then at home again after 3 weeks and again at 4 weeks. At home, the neuro gives me IVIG for two days in a row. They last about 4 hours, but after getting nauseated during the last round, they are going to slow the rate down so that it will take about 5 hours. My first at-home treatment was like a miracle drug, but this last time was like nothing. I got Privigen brand in the hospital but get Gammaplex at home. Hydrate as much as possible, like Barbel said. It will help with possible side effects.

Once you have been on an immunosuppressant for a while, you may well be able to get IVIG less often. My neuro would like me to get it only once every 3-4 months but right now that is not possible. You are not alone. Let us know if you have any further questions!

Thanks everyone for the replies and info.

Steelplayer

I have been getting IVIG for about 10 months now. My first round was 5 days and I did the first one outpatient and the other 4 days were at home. I now get 2 days every 4 weeks. My neuro wanted to move it to every 3 weeks but personally the side effects are too much for me to do it that often and still hold down my job. It does keep me stable but not to the point where I am able to do a ton more then I was before. I was able to get off prednisone at one point, but am back on it now. I hope it is your miracle treatment and makes you feel awesome:)

I did ONE round of IVIG and Cellcept (plus a little mestinon here and there) has carried me the rest of the way. I have never done IVIG since.

I don't understand why you should have any days stay in the hospital for IVIG, The process should only take 4-8 hrs a day, depending on speed of intake.

Good luck!

My neurologist recently put me on six two day treatments each three weeks apart. I was told this was a temporary boost for me until the Prednisone and CellCept was more effective. I felt better after each IVIG, but the boost didn't last but about two and a half weeks. My last treatment was in October, 2015.

I have had only one IVIG treatment. It was over 2 days, each day I was at the hospital for about 4.5 hours, I am still taking mestion as needed and 30 mg of predisone, plus 100 mg of Imuran daily.

The Neuro Dr has postponed my next IVIG since I had good results on the first treatment on 2-8 & 2-9. I hope your results are as good.

Thanks all for the replies.

I still have not had any I V I G treatment as of this time as I am trying to get it done locally verses 3 days in a hospital in Tampa.

I may have made some headway today as a local neuro is willing to oversee the treatment on an out patient basis. I would be going to a clinic that performs infusion and then I would be released to go home each day after the treatment was applied and monitored.

I would still be working with the neuro specialist at USF for everything but the infusion.

Sounds like a good plan. Hope it all comes together and when you get it you feel better quickly.

Unfortunately not everyone responds to IV IG. When my dad crashed in December 2014 from his MG and could not swallow or eat anything, the IVIG pulled him out of it within a few days. He stabilized throughout 2015, sort of, on a steady diet of prednisone. He crashed again December 2015. In that time, IVIG had no effect. We were all very disappointed. Instead, he went through a month of plasmapheresis (PLEX). Now he has to go in once per week for outpatient plasmapheresis to stay on top of things. The neuro's game plan is to get him off the prednisone, but needs to do it slowly and introduce some other MG medicine in its place. He hasn't been stable enough in the last two months to wean him off. At least once a week Plex seems to be keeping him out of the hospital, for now. He's 72 and has not had a thymectomy, although I've been doing digging online about that topic.

As indicated by previous replies, everyone is indeed different. I have had IVIGs every four to five weeks for over a year - in addition to daily mestinon and prednisone. My IVIG is in at an infusion lab and is over in one day. I take 2 tylenol and 2 benadryl ahead of time. One Neuro tried to switch me to Cellcept and I had terrible side effects. Good luck on your journey.

After the initial dose, I had IVIG every 4 weeks, and it worked tremendously. My symptoms slowly progressed over the last 4 years and IVIG kept working great but I had to do it more often until I was getting it every week. I think I began to build up an immunity to IVIG so we switched to plasmapheresis. Hope you do very well and have the great results others have had here. By the way, IVIG may make you feel flu-ish for a day or two and then it kicks in.

Update: 3/19/16

A lot has happened since I made my last post. I had a doctors appointment on the 11th to set up the IVIG infusion at a nearby hospital. I went to the appointment and the doctor placed me in the hospital at that time. My breathing was not good and oxygen concentration levels were low. I had been running a high temperature for 2 days. This led to a 5 day hospital stay. The doctors checked for all other breathing causes such as heart and veins and clots and I passed all tests. I actually have pretty good veins yet for a guy turning 66 later this month.

So we now turned to the IVIG treatments. The IVIG was given over a 5 day period at a time frame of close to 8 hours a day. The product was Privigen, if I am spelling correctly. I was released after the last infusion. I came home fairly weak yet after the infusions but I guess that's to be expected after a 5 day beat up period in the hospital. I am slowly feeling better. I have a neuro specialist appointment at USF on 4/4 to go over the results. I hope to be tapered back on the prednisone, if possible.

One question I would have for the group is this. The doctor that oversaw the infusions stated that there are differences as to IVIG plasma products. He stated that some IVIG products are a lot harder on the kidneys. My next infusion will be taking place at his regular clinic instead of the hospital.

Does everyone agree with his statement and if so, which is the better product.

The other question is, how long was it before you noticed a real difference from the infusion.

Thanks
Steelplayer