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...
All thru those first nine-months and beyond, I was supported with weekly IVIG and high-dose prednisone.
I have not had IVIG since mid-February (it is now mid-June).
I have tapered the Prednisone, now down to 5mg daily.
Maybe you need that interim support, too?
Until the Rituxan kicks in?
Hang in there!
Thinking of you!
Good luck!
Annette
So good to hear these encouraging stories!
So, I guess I am backward, but I am even weaker than before Rituxan.
I am notorious for not responding as expected to most medications.
Did anyone have cd20 levels checked before having next round of infusions? I had my levels checked in April, but the B cells had not returned at that time, so no Rituxan. I am thinking I am going to need some alternate treatment if this test comes back negative. I can't imagine going through a hot Georgia summer and already feeling like this at the get-go.
Did anyone have the B cell test to determine if they would have another infusion, or did they just go by how you were doing?
If I can't get Rituxan again, I would like to possibly give Ivig another try.
Annette
B-Cell test. I just looked through my lab-reports, and don't find anything specific to either B-cells, or CD20. I see my Neuro in 2 weeks, will let you know more then.
I do have results for Lymphocytes Absolute, which is maybe more of a shotgun approach, to measuring B-cells? The standard-range on the test, is: 1.0 to 3.3 thousands/microliter (thou/uL).
mid-June 2014: 0.92.
mid-April 2014: 1.14 More or less: the low-range of normal.
When I was first so very ill - and on Imuran?
mid-November 2012: 0.20. (Imuran was dropped, for Rituxan.)
Here's a link to an abstract, of a small study of MG & Rituxan, including a few LEMS patients. Some of the cases sound similar to what you are experiencing.
http://www.medscape.com/viewarticle/743695
- Ross
Any advice would be great!
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002645/
There's a lot of collective wisdom here, from all over the globe.
Looking forward to your input.
Feel free to start a new topic, to introduce yourself. Use the Discussions box probably, just like you see here .. many of us miss the other options from the pulldown menu, like Advice.
Here' s another recent discussion on Rituxan/Rituximab.
http://www.dailystrength.org/c/Myasthenia_Gravis/forum/18986597-rituxin-experiences/page-2
Also: near the top of the Topics page, towards the right? Is a search engine. Type in Rituxan - and the most recent discussions will pop up.
Sorry you have reason to be here. Glad you have found us!
- Ross
Be patient and things will improve.
Clark