Quote:
Originally Posted by Lin_Z
Hello all,
I am post-thymectomy (2016) and was asymptomatic for about a year, but this year my symptoms have come back to almost pre-surgery levels.
I would like to be treated with Plasmapherisis (the only thing that's ever really worked for me) as a maintenance tool.
My current MD suggested more drugs with more serious side effects.
No Thanks.
To those who have had PLEX:
Did you have a port placed?
How often did you receive plex?
Were you able to have your treatments on an outpatient basis?
The problem I am running into is that they are not able to get access for plex on either of my arms, so I had to be admitted and have a jugular line placed. My doctor will not recommend it as a maintenance treatment because I would have to get the line put in & taken out after every treatment. I have read that some people have used power ports, but cannot find enough info to bring it to my md.
Thank you in advance for your all your help!!
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I would ask about Immune Globulin for treatment of MG. It is very expensive; but specialty pharmacies have financial aid for those who cannot afford it. Plasmapheresis is OK; but IVIG is definitive.