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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IVIG - What to expect?

cgreens
cgreens
Hello group,

I've completed my second day of of five on IVIG treatment. They serve me tylenol and benadryl before every sitting, and I feel the benadryl for a good couple to three hours afterwards. Never taken aspirin really or benadryl before this(no allergies). I guess I might as well say that me and pharmaceuticals of any kind were not really "acquainted" before MG. Anyway, I believe that drowsiness from the Benadryl is the only side effect I am feeling thus far(no headaches). I maybe a little better because my eyes are staying open pretty well tonight after this morning and afternoon treatment, but I am not noticing anything in the way of body strength. Maybe I am feeling a little more balanced, I dunno. My mind has my movements scaled back for safety still, and my guard is always up due to the nasty collapses and falls I've had recently. What should I expect to happen, how long before I should expect something to change, and for how long will it keep me there from the IVIG? Would love to hear form you all that have done IVIG. I am eating snacks and a full lunch while there, and I am drinking plenty of water as the group here told me to do, thank you.

Thanks, I hope all is well.

Also: They increase my speed as I go during the day, and my total time including the benadryl drip has been going just over four hours per sitting. Does that sound right?

Thanks again.

TJ
deleted_user
deleted_user
Curious as to how long in general it takes for IVIG to kick in? My dad has MG and has finished 5 days of IVIG and is feeling worse. He sees the neuro again tomorrow, I just want him to feel better. :(
cgreens
cgreens
Elisa, Hopefully you can get some answers from the Doctor. It could be perception, as your dad should be a bit better already. I had been told here when I asked and it was noticeable to me around a week after the last treatment. That seemed to hold true.

GLTU and your dad,

TJ
krbunn
krbunn
I have an update on my blog (krbunn.blogspot.com) about the effectiveness of my February 2011 IVIG infusions.
deleted_user
deleted_user
Kerry -

I read your blog post with great interest. Everything you describe about your weakness is consistent with MG and similar to my symptoms early on with the disease (you may check my blog if you'd like: http://curt-miller.blogspot.com/ to see how I dealt with PLEX and weakness in my early days with MG).

How much prednisone are you on? I always hate to share my prednisone stories here because some are so sensitive but prednisone - and prednisone alone - is what pulled me out of the weakness. PLEX was useful but, as you learned, effective for a few weeks at best. Samee with IVIG. Imuran and CellCept take many months to chieve full effect so, for those who can tolerate it, prednisone can work wonders.

Curt
catnap2
catnap2
I will be interested to see how it goes for you this month. You and I are in the same place with IVIG, third round. I had similar results to what you describe the first two months. Last month was my third round and I have had much better results. I guess the biggest improvement for me is the decrease in slurring and jaw fatigue. I still have weakness in arms and legs and too much activity will throw me into symptoms. I think the biggest difference is a sense of the mestinon controlling my symptoms more. When I take it the symptoms improve, when it wears off they start back. Before the symptoms were like a wild fire, starting unpredictably and uncontrolled by mestinon. So I call that improvement.
I'll keep checking your blog and here to see how it's going.
Cathi
krbunn
krbunn
Curt:

I will read your blog.

I am on 30mg prednisone, 2000mg cellcept, 60mg mestinon every 4 hours, 150mg effexor, prilosec, prevacid, alpha lipoic acid, b-complex, etc.

Prednisone definitely helps. I have been on as high as 80mg per day. But the "blimpping" was extreme. The PLEX and IVIG are only slightly effective for a few weeks and Mestinon only last a few hours.

I have a good neuro at Vanderbilt and he is willing to do what is necessary to help me. I am willing to try any treatment. I have my next appoint March 30.

The way I see it, I can either opt for treatments (even aggressive) with an opportunity to improve or slowly continue to decline. I do not want to go silently into the night. But, I can handle that as well if necessary.

I am sero-negitive for MG (positive SFEMG) and have the other neuropathy issues that complicate my treatments. The small fiber neuropathy and autonomic neuropathy are horrible diseases as MG.

There is still a possibility that all my problems may be caused by a paraneoplastic condition. At one time they even thought I had lymphoma. At least that is what the PET Scan showed. I still may have a hidden cancer somewhere. From what I understand, even one cancer cell can send the immune system into overdrive.

Something is producing a still unknown antibody that is attacking my entire nervous system. Any treatments we do just seem to keep me at status quo, or just slipping down little by little.
deleted_user
deleted_user
Kerry -

When you say the "blimping" was very high from the prednisone, are you referring to weight gain, moon face, dowager's hump? When you were on the 80mg per day, how were your MG symptoms?

i think we try to find balance between the good and the bad, meaning we try to minimize the bad and maximize the good. When I was on heavy doses of prednisone, I did have to deal with all the downsides to the drug but the upside was relief from those miserable MG symptoms. I could almost function normally. I, too, have neuropathy, but that is secondary to the MG.

Life will be better for you, Kerry. It may take many months, but you just need to believe it. That's what someone else told me when I was where you're at. I couldn't believe it but, today, you would (and more important I would) hardly believe I have MG. I'm 98 percent symptom free. I went from 60mg Mestinon x 5 to taking 30mg maybe twice a month.

To save you from searching, here is the most relevant blog page from my blog:

http://curt-miller.blogspot.com/2006_02_01_archive.html

This diary was made when I was where you are now.

We'll all pray together that you get by this soon, Kerry.

Hugs,
Curt
krbunn
krbunn
Curt:

Weight gain and moon face were the big problems. I was on 80mg for several weeks and cannot tell a difference from the current 30. I have been in contact with my neuro and he want to get more aggressive in my treatments. That is fine with me. I am willing to consider any option if it will help. I will see what that involved this month.

I honestly believe when I lost the ability to walk in June 2009, it was the prednisone given to me as a precaution for the CAT Scan with contrast that made it possible for me to walk with a walker in a day and with a cane in a few days. I believe in prednisone for me.

Kerry
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