Doesn't sound too promising, then. Oh well, I go to a new nephrologist Thursday. Maybe he will get me back on plasmapheresis, which I know works for me and I don't have to wait two weeks or get meningitis.

Limpy, are the plasmapharesis side effects as bad as IVIG? Did you have to get a port or do they do a pic line? How much pf a hassle is the port/pic?

I am afraid of doing the IVIG again because of the bad reaction. I am also afraid of going through the hassle of a port for the short term if I really want a thymectomy. Any guidance would be appreciated.

thanks
kathie

I have absolutely no side effects from plasmapheresis. Only feeling better immediately afterward. I have literally dragged my self in to get it and had to call for a wheel chair to get me upstairs, and I could have easily pushed the wheelchair with the nurse in it after my treatment. I have gone shopping and errand running after treatment, something I can no longer do on a regular basis.

My only problem during plasmapheresis is that, because I have Lems, which blocks my calcium channels, I am much more sensitive to the binding of calcium due to the citrate they use to keep my blood from clotting. As long as I have a steady drip of calcium during the entire treatment, I am fine.

Plasmapheresis is definitely worth it for me. Having to have a catheter is the only down side.

You have to have some sort of venous access to get plasmapheresis. The first time I had it, they installed a temporary catheter in my groin, which is only usable in a hospital setting because of infection possibilities. They prefer to put them in the chest because of heightened chance of infection at the groin, but they couldnt get it in my chest at the time. This is removed before you go home. In March, I had a semi-permanent tunneled dialysis catheter installed in my jugular vein.
With a tunneled catheter the risk of infection is not as great, since it is tunneled under the skin for several inches. If it is determined that I will have have to get plasmapheresis forever, I will probably have to get a more permanent access site that would be totally under the skin. Right now I am titrating up my dose of Dap to see if I can overcome my symptoms without additional treatments and I am much better. Swallowing is just such a stubborn symptom with me, though.

When I thought I had MG, I wanted a thymectomy too, but was told that no surgeon would touch me unless I got stabilized first. If plasmapheresis stabilizes you, there is a greater chance of you being able to get a thymectomy.