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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#1 | ||
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Junior Member
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not sure if I have the spelling of these 2 treatments correctly but does anyone have any experience with these treatments?
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#2 | |||
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Co-Administrator
Community Support Team
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Weekends are sometimes slower , you can use the search tool in my sig, to find posts on those topics..
__________________
Search the NeuroTalk forums - . |
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"Thanks for this!" says: | ErinBear (08-15-2016) |
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#3 | ||
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Member
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Hi dl4plans,
I have had IVIG, but I have not had plasmapheresis before. Is there anything in particular you need to know? For me, IVIG has been quite helpful. Initially, I received it a number of times in the hospital when I had exacerbations of my symptoms that were quite bad. I had five days of treatment. I am receiving IVIG now, two days in a row every two weeks, on an outpatient basis. Everyone is different. I have heard some people get IVIG and experience no side effects with the treatment. I do get side effects, and I think that happens pretty often for patients. I take medication before they give the immunoglobulin. I take tylenol, zofran (an anti-nausea medication), and also Maxalt (an anti-migraine medication, because unfortunately it also gives me a migraine). It is also common to give Benadryl with infusions, and sometimes a steroid medication like prednisone. These can lessen the chance of a reaction to the IVIG. If you will be receiving it, you can also help yourself by drinking water and being well hydrated the day before your treatment, and trying to drink the day you get the treatment if you can as well. If you start experiencing symptoms while you are getting the infusion, ask the nurses to slow down the rate of the infusion or even stop it for a few minutes. This can really help a lot. If they slow down the rate of the IV, it can make the side effects more manageable or even go away. I hope this answers some of your questions. If you have other questions, feel free to ask. Maybe somebody else will be able to answer your questions about plasmapheresis. Take care, Erin |
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#4 | ||
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Junior Member
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Quote:
Click on link bellow; Plasmapheresis | Definition & Patient Education Last edited by Snoel; 08-14-2016 at 05:50 PM. Reason: add info |
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"Thanks for this!" says: | ErinBear (08-15-2016) |
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#5 | ||
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Quote:
I have ben much better since, although all my medicines were increased also. Hope this helps. Good luck FREDH |
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"Thanks for this!" says: | ErinBear (08-15-2016) |
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#6 | ||
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Junior Member
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Hi, Why you took IVIG? SFN anybody?
How many treatment it took so you feel better? Thanks |
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#7 | ||
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#8 | ||
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Junior Member
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I'm still doing a weekly plasmaphereseis every Wednesday it's going to be my 73rd...on the 6th day I'm starting to have difficulty speaking very slurry and numbness in face, lips and tongue and my taste buds get affected, my food doesn't taste the same, a few hours after my exchange I'm already starting to feel better and after a good nights sleep I'm back on top of things...at one time I was doing back to back Plasma exchange and IVIG and wasn't really worth it, it took 7 hours so I only do Plasma exchange and works wonders for me so far and I'm very lucky to be able to use my arms veins...
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#9 | |||
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I've had both. Ivig didn't help and second time I had it, I got aseptic meningitis. Plasmapheresis helped a lot.
I have had many, many periodic series of treatments, but do best with a regular schedule. I now get one treatment every other week. With Ivig you can usually just get it in a vein. If you have really good veins, you can get plasmapheresis through the large veins in the crook of the elbow, one needle in each arm, but you have to lay very still during the treatment. One draws the blood out and the other returns it. My veins are too mushy and collapse, so I have to have a dual port. |
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Thread | Forum | |||
IVIG for SFN | Peripheral Neuropathy | |||
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