Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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Question concerning I V I G treatment

steelplayer
steelplayer
Just a couple of questions for MGer's that have been treated by way of IVIG infusion.

It looks like I am moving up to the next level of treatments. The Mestinon and Prednisone is not enough to keep my situation under control.

I went for my first " neuro specialist" visit this week at USF in Tampa and I have been placed on Imuran and I am also being set up for IVIG infusion.

I am just questioning how long of a time frame IVIG treatments have to be given to a person being treated this way. I know that the first injection is going to require a 3 day hospital stay and I'm told that the positive results of the treatment should last between 4 to 6 weeks and then its do it over again, I am also hearing that some MGer's are able to get off these treatments once the Imuran finally kicks in. Other reports state that a patient may be on IVIG for life.

Anyone care to share their experience with these treatments.?

Thanks
Steelplayer
xmas25
xmas25
did they ever find a cause for the temp-mg itself doesn't cause fevers. The fever and probable virus or infection caused you not to have any good result since you were at at the bottom of "goodhealth"hope you're feeling better and stronger.
ladylife
ladylife
Google IVIG side effects for lots of info, but one of the most important ingredients to avoid is a sucrose (causes problems with kidneys) That should present no problem since there are plenty of other options. I had Privigin in the hospital, too. Now, I get Gammaplex at home. I have far fewer side effects from the Gammaplex. I would encourage you to keep a journal of how you feel each day. I react differently to IVIG each time. I am hoping journaling each day will help me find a pattern so I can predict what I will feel like in the coming days. I hope you respond quickly to the IVIG!
ladylife
ladylife
Steeleplayer, I am currently getting my 4th round of IVIG. I started with 3 infusions of Privigin in the hospital in JDecember and then went to Gammaplex (2 infusions). I have reacted differently each time. The most dramatic response came 3 days after the last day of my first infusions with Gammaplex. Last time, it was not dramatic but my 3rd week following the infusions was my best. I am on a 4 week interval of infusions. Neuro just increased treatment from 2 infusions to 5 infusions at a time (currently on day 3). This will be my first time getting 5 infusions. My insurance pays for at-home infusions so I do not miss work. (I have virtually no quality of life, but I am able to continue working.). I am thankful! Hope this info helps in some way.
steelplayer
steelplayer
Thanks all for the replies.

The doctors think that the root cause of my fever was a blood clot in the lungs. They put me on a blood thinner and strong antibiotics for the entire time I was hospitalized.

I am feeling some results from the IVIG already. I can feel my lungs working deeper and stronger. I see that several have had to increase their IVIG maintenance infusions. That concerns me a bit as I was hoping to get at least 4 to 6 weeks before maintenance doses and then do just one treatment.

Have a good weekend all and thanks.
ladylife
ladylife
Don't be discouraged, steel player. We are all different. You and your doc will discover what your body requires. Hang in there. You are not alone.
steelplayer
steelplayer
Thanks all for sharing your experiences.

Lady Life, it appears that you have really been fighting an uphill battle. I'm very sorry to hear of your and everyone's situations. It does seem that some have some level of success.

I also still work but I am fortunate enough to work from my house except when business travel is required. My insurance will not pay for home infusion. I am setup now though to go to an infusion clinic at a cancer center for future infusion needs. My insurance company will only pay 70% of these infusion costs but once I reach the maximum out of pocket limit and they will have to pay from there on.

I have several follow up doctor appointments lined up during the next 2 weeks and I hope that the neuro will be able to taper me back a little on the prednisone. I'm still on 60 mg of prednisone, 90 mg of mestinon and 50 mg of Imuran a day.

Hang in there everyone. We all have to get through this somehow.